Sam I Am

A New Chapter....

2008-05-14T02:31:00.004-05:00

Please join me at my new blog...

TWO TWISTS OF FAITH!

Shout Out for B!

2008-02-03T18:18:00.000-06:00

Wanted to share another beautiful video on the "Five For Fighting"/What Kind of World do you Want website.

My friend and fellow autism advocate in our hometown, created this beautiful video of her son and the beauty found in autism. Five for Fighting donates $1 per view to Autism Speaks. Stop over and view a few times.

Beautiful B and autism video (click)

Her family and ours are also walking in the "Steps of Hope" Autism walk for our states Autism Society. Thanks to those who have pledged already. If you haven't had a chance to yet, here is a link to our secure pledge site.

Steps of Hope pledge site

Thanks to everyone for always being so supportive.

A Twist of Faith
Everything that is done in the world is done by HOPE. ~Dr. Martin Luther King, JR

My 2 Cents on Eli Stone taking on Autism and drug companies (Please see 1/28/08 update below from the American Academy of Pediatrics)

2008-01-24T23:55:00.000-06:00

Who is Eli Stone? My 2 cents worth on that in a bit.

My 2 cents worth... of sharing about Sam since starting kindergarten has been deliquent, therefore I am closing this account. Just kidding! I will say I am sorry that I haven't updated for a long time, but I will share why as I move to a new blog beginning with my next post. The next post of this blog will have the link to my new one. Thanks to all of you for encouraging me to get back on the saddle, and I hope to do that from here on out. S.M.S., I will dedicate my first post of my new blog to you (thanks for pledging and kicking me in the butt, and a check is in the mail for Ethan and the American Heart Association).

Before I move...to my new blog...I want to have this post be to our family and friends to understand our position on Sam and what we believe to be his origins of Autism. I say this prior to a prime time series that is coming out next week on ABC....

Eli Stone...this is a new series about which the New York Times said Wednesday, "The drama, “Eli Stone,” scheduled to be broadcast at 10 p.m. on Jan. 31, centers on a lawyer who begins having visions that cause him to question his life’s work defending large corporations, including a pharmaceutical company that makes vaccines."

Eli goes on to defend a mother whose son has Autism, as they take on a large pharmaceutical company in the series premiere.

(Update 1/28/08) Copy of AAP Release:

For immediate release: January 28, 2008

CHICAGO - The American Academy of Pediatrics (AAP) is demanding ABC cancel the opening episode of “Eli Stone” scheduled for Thursday, January 31. As reported in The New York Times, the episode features a lawyer who argues in court that a vaccine caused a child’s autism. While the show includes statements that science has refuted any link between autism and vaccines, the episode’s conclusion delivers a contrary impression; the jury awards the mother $5.2 million, leaving audiences with the destructive idea that vaccines do cause autism.

“A television show that perpetuates the myth that vaccines cause autism is the height of reckless irresponsibility on the part of ABC and its parent company, The Walt Disney Co.,” said Renee R. Jenkins, MD, FAAP, president of the AAP. “If parents watch this program and choose to deny their children immunizations, ABC will share in the responsibility for the suffering and deaths that occur as a result. The consequences of a decline in immunization rates could be devastating to the health of our nation’s children.”

No scientific link has been found between vaccines and autism. The AAP and other health organizations will continue to work to ensure the safety of childhood vaccines.

For accurate information on autism, immunization and other child health topics, visit the AAP’s Web site, http://www.aap.org.

Our position as a family and in regards to Sam, has been that we do not blame vaccines. In our case, Sam's vaccines did not contain large amounts of the mercury-based vaccine preservative called thimerosal. You can get the lot numbers for any vaccines your children receive from your pediatricians office. You then use the lot number to search VAERS Public Data, as well as the site CDC site. Another site of interest is Aspies for Freedom, to witness from the eyes of those with Autism, and how they feel about people thinking they need to be cured. A post from a couple years ago about "Vaccines and Autism" was created by the sites administrator, Amy.

If Eli Stone can find faith in George Micheal's big comeback, perhaps we can find faith and strength as a community to not blame but accept, and to not cure but to celebrate.

A Twist of Faith
My 2 cents worth...is that I hope one day that our Autism community will not be divided on the cause of Autism, but united in the acceptance of who our children are.While we refuse to discredit the families who feel victim and believe that vaccines are the cause, for Sam and us, all roads lead to genetics and the beautiful Sam that God knew before he was born.

The word of the LORD came to me, saying, "Before I formed you in the womb I knew you, before you were born I set you apart;" (Jeremiah 1:4-5).

Recalling things...(Journal#80)

2007-09-19T22:17:00.000-05:00

I can easily recall the first feelings I had that Sam was possibly autistic. I can easily recall the first diagnosis, the second, and third...all to confirm that Sam had autism. Watching Oprah yesterday, who did her first show on autism only a few months ago, and followed up already again with Tuesday's episode, made me recall some of those feelings.

Seeing Jenny McCarthy on Oprah yesterday was nice, because it helps get more awareness out there on autism, and helps people understand our kiddos. What was harder for me, was her constant word use of "getting my son back", or that he is in "recovery". I guess for me personally, I have never felt the need to get Sam back, or to cure and recover him. I feel that Brent and I have always accepted Sam for who he is and have worked with him to help him function at times when it may be hard for him. Yes we have had him in intense therapy and programs and speech and OT and tri-monthly medical assessments to monitor his medications. I consider these methods to be tools to help him function in life better, but not change who he is. If you have poor eyesight, you help your eyes by getting glasses. We are just helping Sam along the way.

I guess what I am trying to say, is that we only know Sam as he is. How God blessed him to us. We know nothing different, nor do we want anything different.

Sam has a real hard time with word recall. Some of his worst metldowns occur because he can't recall or remember the simplest words. The other day, we had a 45 minute meltdown because he tried so hard to remember the word cup, and couldn't. And the problem arises when I give him his word choices, and I don't choose the right word he has fixed in his head when he hears it. Here is how it went:

As Sam stood by the refrigerator, he swayed back and forth saying over and over "I need....I need... I need"

I tried to give him some good wait time to recall on his own first, but it is kind of like a balancing act, because if you wait too long before giving him a couple of choices, the meltdown starts, and if you give him some word choices too early, you will have a meltdown because he wanted to think of the word on his own first.

I chose to wait this one out.

"MOM...I need...I need...I need.....oooooohhhhhhhhh" as he then falls to the kitchen floor on his tummy and pounds his fists onto the floor.

I then drop to the floor at his level and look at his face and say "Sam...use your words, not your scream. Mom will help. Do you need food or drink?"

He quickly screams. "drint".

"So Sam, say ...I need drink".

He then rolled over to his back kicking and screaming saying, "no drint".

I am quickly giving some drink choices to see if those are the words he was trying to recall. Of course, to no avail, were any of them right.

Long story short. All along he was trying to say, "I need cup". He was going to get his own water. He just needed a cup.

It just really makes me sad sometimes, when he can't recall simple words like that, and when I see the frustration in his eyes in trying to recall the correct words or phrases. Yes all of those things can make me sad for him, but it never makes me want to change who he is with his autism. I guess you could say I would never "recall" my boy and send him back! :)

A Twist of Faith
Sam and I have been working on some of his vocabulary cards the last few weeks with many of them containing animals. We started this silly game, where Sam says, "What if I was a snate (snake) mom?" and I always follow up with "I would still love you the same Sam."

Well the other day he laughed and he followed with, "Mom, what if I was mouse?" as he knows I HATE them. I gave him the response that I thought he wanted.

I faked a scream, "ooooooo Sam, I would run around the house screaming." Sam very quickly put me back in my place. "MOM!" he said, "You ted you dove me anyway!" (you said you'd love me anyway).

Now tell me he can't recall things! Thank goodness he remembered I will always love him no matter what, and my heart knows that he also knows that God does the same for him.

But Zion said, "The Lord has forsaken me, my Lord has forgotten me." Can a woman forget her nursing child, and show no compassion for the child of her womb? Even these may forget you, yet I will not forget you. See, I have inscribed you on the palms of my hands…. (Isaiah 49:14-16)

On the outside looking in...(Journal#79)

2007-09-05T23:19:00.000-05:00

I want to see my baby in school. Such a weird feeling to have your youngest start kindergarten. Such an even weirder, uneasy, waiting to see feeling... to have your youngest start kindergarten, be in special education, and oh yah, be autistic.

While we have been trying so hard to have Sam be as mainstreamed in life and school as possible, there are still so many times we feel like we are outcasts or on the outside looking in. The first day of school was a great example. Our district decides if your child has morning or afternoon kindergarten, unless they have an IEP that would state differently. Of which Sam's does. Sam is in private speech therapy twice a week for two hours each time through a local hospital. After almost 3 years of one-on-one speech with an SLP, Sam is now in a program focussing on social/converasational speech skills with 4 other children and 2 SLP's. This program meets in the mornings. Brent and I felt it important to push for afternoon kindergarten, as we didn't want to pull Sam from this program because it aligned so well with his IEP language goals. So...we made the choice to have PM kindergarten.

We did not know that our whole neighborhood is AM kindergarten because they are walkers and walkers always get AM.

So Tuesday was the first day of school. I am so excited and have both boys outside to get our pictures by the same bush I have always taken our oldest's picture by since he started school. As we are taking the first day pics, the neighborhood mob of parents and children go walking by to school. While we were invited to partake, we did not, because Sam didn't need to go until PM, and Zach was getting a personal escort and ride by Brent. So once again, our attempt of getting Sam hooked up more with neighborhood friends seemed lost. Playdates are already being arranged for afternoons, when everyone is home from school (but Sam won't be). Pictures were being taken on the corner of "the group" that now walks together to school each morning. As hard as we try to keep up with typical friends and neighbors, it seems like we tend to keep out better. I am still not going to give up, but sometimes I just want to say "geesh, can it ever be in our favor".

I have intentionally kept some barriers up with neighbors, because some of the times we have had with them feels like such a struggle when I have to explain some of the things Sam does constantly. It is hard when they don't really understand. In most part, I can say it is my fault that we feel like we are outcasts. I know I could explain to them and try harder, but just don't always want to, nor have the energy to.

The first day of school came and went so fast, it is already almost Friday. My little boy is growing up fast. I wish he would tell us more of what he does at school. I will be touching base with his teacher tomorrow. I just want to know if he talks, or attempts to interact with peers. I just want to know, I don't want to be on the outside. I want the inside scoop. I don't want to always be on the outside of everything looking in.

A Twist of Faith
Sometimes life, people and situations can make you feel like you are an outcast. That in fact you are on the outside looking in. In those moments in time, we can be thankful that while it feels like we are on the outside looking in, that we always have the option of looking up. Of looking up to Him who provided for us. To that Jesus on the cross that saved us all.

I lift up my eyes to the hills- Where does my help come from?
My help comes from the LORD, the Maker of heaven and earth.
He will not let your foot slip -
He who watches over you will not slumber;
Indeed, he who watches over Israel will neither slumber nor sleep.
The LORD watches over you
The LORD is your shade at your right hand;
The sun will not harm you by day, nor the moon by night.
The LORD will keep you from all harm -
He will watch over your life;
The LORD will watch over your coming and going
Both now and forevermore.
Psalm 121

Reduce, Reuse, Recycle...(Journal#78)

2007-08-20T20:29:00.000-05:00

We pulled in the driveway from our trip to the store. As I get ready to push the garage door opener, a screaming shrill of excitement rips through the van. Sam sees it by the front door, left there by our UPS delivery driver.
"Bots, my bots mom" Sam screams.
"Bots, my bots, my bots" he continued as Zach and I unbuckled and went into the house.
"Det my bots, det it!.
"Sam, let mom bring in the groceries and then I will get the box," I said trying to calm him and to get us in the house first.

Most kids are excited about boxes, yes, I agree. Especially when they are babies. They always love playing with the boxes their presents came in rather than the present itself. Sam has stuck to this action since he was a baby.

Reduce...I wish we could reduce the clutter sometimes that Sam accumulates. He would have his room full of boxes and other "garbage items" if he always had his way. He tapes the boxes together for his creations with our blue painters tape. An important staple in our house.

Reuse...Once Sam has recovered a box from the garbage or recycling, he reuses it over and over again. Creating one masterpiece right after another. It is amazing watching what his little mind comes up with. The challenge is that no one can touch it or come near it for days. And if you even bump it, look out!

Recycle...We can't throw ANYTHING away. He actually goes to the garbage in the kitchen a couple times a day to see if anything of value has been discarded. When he finds other objects of interest, he then takes them to his box sculpture and tapes them on with the blue tape. This is a daily event at our house. This child can recycle and make use of anything.

While boxes can become irritating in our house because of the way Sam can take over our house with his box sculptures, they are an incredible blessing. They are a reminder to us to reduce the attitudes that clutter our minds, to reuse the things in life that make us happy, and to recycle and share those moments with loved ones.

A Twist of Faith
I love the saying that "God doesn't make junk". He makes use of everyone and everything on this earth. He is the great recycler. If we just reduce the focus on ourselves and recycle the love He gives us everyday, this world would be an amazing place. Recycle meaning to witness and share with everyone!
"Put out into deep water, and let down the nets for a catch" Luke 5:4

A Vigil and week of silence...(Journal#77)

2007-08-02T22:55:00.000-05:00

(Update as of August 20th~ I had decided to leave this blog entry longer than a week and until the last body was recovered. That happened tonight, bringing the death toll to 13, with well over 100 injured. Prayers for all involved.)

...for our community here in Minneapolis and the victims, survivors, search teams and especially all the families still waiting to here word on the missing of the Mississippi Interstate 35W Bridge.

Today, as we drove to the University of Minnesota, as we have been the last two weeks...it was creepy and surreal. Having to go over the Intertate 94 bridge instead, and seeing the rescue boats in the river was chilling, knowing there are still cars with family members of people here below us in the flowing river. Again a reminder of how important each day is. Peace and prayers for all our fellow Minnesotans, and a week of blogging silence for me. Shalom.

On the inside...(Journal#76)

2007-06-25T22:54:00.000-05:00

...all God's children are amazing!

My friend Aspiemom brought my attention to Paul Potts from England in a post she did last month. The video is of his first audition of the English version of America's Got Talent. He later went on to win the competition in early June. As Aspiemom said, watch the judges expression when they first see him.

Just as Simon and Piers' faces revealed surprise and wonderment at the end of the video, because they weren't expecting that kind of beautiful talent from somebody who looked like that, such are similar situations for our children with autism.

I will brag, that our Sam is the most incredible charmer I know. When he is on, and things seem in balance, he will give you a smile to die for. So lately, as some of his meltdowns and aggression seem to be flaring up more, it throws people off as to the person he really is. When he looks like any other 5 year old boy, and smiles so beautiful, how can one make sense of an instant change to his head ramming, screaming, and destruction of things. All this because we misunderstand what he says, needs, or wants.

But...it is here, this week, that I wish our world was just more accepting of everyones differences. Brent and I are in Iowa for a week. We are directing a high school church camp, of which we have been a part of for 11 years. It is amazing the challenges that these children bring to camp. Sexual abuse, family problems, eating disorders, dealing with recent death and illness of family and parents, the list goes on. Our kids today have so much on the inside, yet can appear to others on the outside as fine. It is only in certain situations does the hurt come out, whether it be at a night worship around the campfire or when they are spending time in their small study groups.

As we prepare for the last full day of camp with these incredible youth, it is heavy on my heart, just how much we judge people by their exterior. That if they appear typical on the outside then we don't understand when the inside feelings we have change our outward appearance.

On the inside, some may hurt.
On the inside, some may want to be their true self but for other reasons can not.
On the inside, in our hearts, is where we can keep God's love for those times when we are judged by others. So let us too remember not to judge one another but to love one another from the inside out.

A Twist of Faith
As the scribe asked Jesus what he felt was the greatest commandment, the law that should be at the top. Jesus replied, "First, love God with all your heart and soul. But most important, love your neighbor as yourself." If we really loved our neighbor as ourselves...everyone...including our children with autism would be accepted by all.

Out our own front door...(Journal#75)

2007-06-22T08:45:00.000-05:00

...is the neighboring suburb of Blaine, where yesterday afternoon, yet another autistic child was found dead. Five year old Kaylie Dickerson wandered out of her home without her family knowing it and wandered across the street into a pond. As the autism community in this area just mourns the loss of another autistic child who wandered away last week and died, in which area people here even volunteered in those search efforts in neighboring Wisconsin, yet the tragedy happens again. While we did not know them personally, goose bumps and heartache for the family is what I feel.

According to news reports yesterday and today, even Kaylie's family had all the necessary things in place to make sure she would not wander away, according to police.
~I am guessing that they too, like us, have a security system that also alerts you when someone is coming or going when the system is off.
~I am guessing that they too have a visual PEC system card near the door, that visually tells the child to stop before going outside and ask an adult.
~I am guessing that they too have a fenced in yard.
~I am guessing that they too have some type of indoor sound/video system to monitor their child in the house when they are not in the same room.
~I am NOT guessing, because I KNOW that we are all a part of the same local autism community, I know that our children are both 5, I know that our hearts ache for them.

Out our own front door is a lake. That has always been a concern. But geesh, in the land of 10,000 lakes, that is a little hard to avoid. Out our own front door, is a reminder that we should not let our guards down as we have a little this year. Up until this summer, anytime I am outside with Sam, I would hold him by his wrist (tightly) because he would not hold my hand. We had to always do this because he did not understand safety and would dart in to traffic and always away from us like a toddler would do. I know people thought it was ridiculous that we always had such a grip on him, but he was unlike our oldest, who understood by 2 years old what danger was. When I say we have let our guard down this summer, it is because Sam seems to understand a little better his boundaries and rules at home lately. He still goes out of the house without asking, but this summer we have been less worried about always having our security system chimes on that even alert us to which door. As of today, they are back on.

Safety is such an issue with all of our autistic children. For some it is that they are completely non-verbal and are unable to express help when they need it, for others, like Sam, is that they don't understand safety, or perhaps the way we teach it to them. We can not play "that game" parents play when they need to leave a location. You know the game...when the child refuses to go with you, and you say, "okay, we're leaving, see ya later". Sam is just fine with that, and innocently starts walking away to do whatever he wants to do next and pays us no attention. It is not in the naughty sense either, it is purely that he doesn't understand that he can not be left alone.

Out our own front door...in our neighboring suburb, we mourn for Kaylie's family.

Out our own front door...and across the street, we have the reminder that you can never take our kiddos safety for granted.

Out our own front door...is a world we pray will keep all of our children safe.

A TWIST OF FAITH
Out our own front door, we are reminded of just how unsafe it can be for all of our children. Sometimes, no matter how prepared we are, the unthinkable happens. Once again, we feel unsafe. But there is one place we can seek safety and peace, for we all know that God provides that for us. Kaylie is now safe and back in his arms again.

We depend on the Lord above to save us. Only he can help us, protect us like a shield.
~Psalm 33:20

Prayers for Benjy's family (Journal#74)

2007-06-20T21:38:00.000-05:00

Posted June 20, 2007

Missing boy's body found in pond near home By Karen Madden
For the Wausau Daily Herald

TOWN OF SARATOGA -- Hope turned to sadness Tuesday when the body of 7-year-old Benjy Heil was found less than a quarter mile from his home.

Benjy disappeared from the home early Thursday evening, having apparently wandered away on his own. Each day since then, between 400 and 600 emergency personnel and volunteers searched for the missing boy, who had autism that impaired his ability to communicate.

A search dog discovered Benjy's body in a pond adjacent to Ten Mile Creek at about 11 a.m. Tuesday, said Lt. Dave Laude of the Wood County Sheriff's Department. The pond, which is as deep as 25 feet, had been searched repeatedly since the boy was reported missing.

The Sheriff's Department is investigating Benjy's death, although it is thought to have been accidental, Laude said. Wood County Coroner Garry Kronstedt said an autopsy has been scheduled for Thursday.

"The sympathy of our whole department goes out to Benjy's family," Sheriff Thomas Reichert said. "My thanks goes out to the extraordinary people who assisted."

The Wisconsin State Patrol, National Guard and Saint Joseph's Hospital in Marshfield were among the agencies that sent planes or helicopters to scour the area.

The Heil family reported Benjy missing at 6:38 p.m. Thursday and Wood County Red Cross Emergency Services quickly set up a command center across the road from the family's house at 14007 Highway Z.

"We can't begin to convey our emotion and gratitude at the outpouring of giving that has made it possible to serve the people serving the operation," said Pattie Kelnhofer, emergency services director.

K-9 units from local and state law enforcement agencies and dog search teams from Minnesota, Illinois and Michigan assisted with the search.

A TWIST OF FAITH

I give you this one thought to keep
I am with you still-I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sunlight on ripened grain,
I am the gentle Autumn rain.
When you awaken in the morning's hush,
I am the swift, uplifting rush
of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not think of me as gone-
I am with you still-in each new dawn.
(A Native American Prayer)

Prayers for Benjy (Journal#73)

2007-06-18T18:32:00.000-05:00

(The following is from WEAU.com)

June 18, 3007
Missing Autistic Boy in Wood County (Wisconsin)

Emergency crews, family and friends continue to comb the woods of Southern Wood County looking for seven-year-old Benjamin Hile.

Family members say Benjamin, who is autistic, went missing shortly after seven last night when he wandered away from home on County Road Z. That’s near the Deer Trail Park Campground outside of Nekoosa.

They've been searching for him throughout the night and they won't give up until he's brought home.

"It's scary for a seven-year-old boy to be missing anywhere," said a community member.

And when a seven-year-old goes missing near a campground, that's close to water, just before dark, it's even worse.

That's why the community is rallying together to help bring the boy called "Benjy" home.
They've set up a command center here on County Road Z where more than 100 came Thursday night to help search for Benjy.

"We have multiple agencies, fire agencies, been utilizing helicopters...ground searching, we have dogs," said David Laude, a Wood County Sheriff.

And they have the hope that someone will find Benjy in Wood County.

His family says he has blonde hair and blue eyes. He is wearing a blue "Buzz Lightyear" shirt and silver shorts and is barefoot.

Benjy is autistic, but they say he will respond to the command "come here."

If you see Benjy please call the Wood County Sheriff's Department at 715-421-8700.

A TWIST OF FAITH
Dear God,
Please guide the search team,
please embrace the family,
may a safe return home be made.

Proud to have an Autistic child...(Journal#72)

2007-06-18T10:49:00.000-05:00

Today is Autistic Pride Day, which had me all set up to write about it.

Write about it that is....until I received the Google news alert that David Kirby had an article in the Huffington Post that frustrated me.

Write about it that is...until I visited my friend Kristina's site. Her post today made me proud to know her works and her Charlie's story. It deals with a huge debate in our community, and for me sums up how I feel about David Kirby's root into the autism community (which he is apparently pulling out now).

Thanks for your words today Kristina, I can not sum it up even close to your great post today!

He's gone.....(Journal #71)

2007-06-09T00:22:00.000-05:00

Our Sam is gone. He is not sleeping in his bed in the room below me. He is not curled up with his bunny blankie from Aunt D, he is not laying with his hands perfectly folded under his head, he is not stomping up the steps to tell me "potty" in the middle of the night. He is gone. Okay, don't freak out. He didn't escape into the night through our security system and all. He is at church camp for the very first time. And...don't worry, he is not alone.

Our denomination has this awesome Grand Camp they offer every year. It is just a "one nighter", but grandparents bring their grandchildren. It is a way for them to get a taste of church camp very early on, and a chance for grandparents to relive theirs.

I should feel fine...as Sam is in awesome hands with Grandma, and...he is on Holy Ground. Everyone refers to our church camp as that, even though it is not named that. Brent and I have been counting down to this day, just like we did the first time Zach went. Partly for a selfish reason, because it is an important place to Brent and I. We love that place, and we have directed for years, a high school camp there for a week in July, and will do so again in a few weeks. We started doing that well before kids, and we used to dream of the day our kids would start coming to camp. Our next dream is the day Zach joins us in high school camp (which I really hope takes forever, because I don't want those years to fly by).

Sam going to Grand Camp feels a little different than it did with Zach. Zach has been the typical first born, independent and fearless most times. But Brent and I aren't sure what church camp will hold for Sam. I don't know that I will ever feel comfortable sending him to church camp alone once he gets old enough to go, unless I could go as his assistant or PCA or something.

Sam gains knowledge of this world, just like all of us, by observing and then applying. He copies and mimicks everything, even down to the way something is said. He caught an episode of "Arthur goes to camp" on PBS kids a couple weeks ago. He has seen it a thousand times, but when the countdown was on for him to go to camp, he started preparing mentally for it. This morning as we were heading out the door preparing for our trip, his sweet little voice said,

"Mom, know morneeeeen at tamp?"
"Yes Sam, there will be morning at camp."
"No mom, you know what do in morneeeeeen?
"What Sam?"
"Wait up lite dis....." (wake up like this) as he then places his hand up to his mouth like a bugle and imitates a bugle call.
In my mind I am flashing back to Arthur and thinking great, he is going to think they will do everything. Sam is notorious for scripting and memorizing episodes. While he didn't go into script, this is what came next (for those familiar with that episode).

"Mom, dirls mean" (girls are mean). On the episode the girls and the guys at camp go at it because they think they are scaring each other in their tents, but it ends up being the bullies from the other camp.

"No Sam, girls are not mean. The girls and boys were both teasing each other in Arthur. That is what you are thinking about Sam, isn't it?"

"Yaaaaaaaaaaah." Discussion ends until we are in van.

"Need a tary tory" (scary story).
"What Sam?"
"MOM, NEED A TARY TORY. HAB TO HAB TARY TORY. TARY TORY MOM. TEEEEEELLL ME NOW."

Oh yah, then in the Arthur episode, they talk about the typical scary stories around the fire. I am just imaging what is going through my little boys head.

"Sam, they don't tell scary stories at church camp. That was just on the show Arthur. You sing around the fire at church camp."

He shrieks a little louder this time, "NOOOOOOOOOOOOOOOOOOO!!!!!! MOM, HAB TO TELL TARY TORY. YOU HAB TOOOOO!!!! NEED TARY TORY. TARY TORY MOM!!!"

Okay, so about now I am thinking, do I tell him a scary story so he has one? Then I think, duh, then he will be scared, he will play it in his head 50 times, then he will be scared at the campfire. So I try to think of a silly story, so I start telling him one. (This happens to be a real story, because it was all could think of on the spot. And...stupid me, this also happens to be the same Sesame Street book that Sam makes me read to him EVERY Monday and Wednesday while we are waiting in the waiting room for speech. He goes and gets the book from the shelf, I read, yada yada yada. ) Dang, he remembers word for word how it goes, I obviously don't, as I am fumbling words together. Look out...hear comes another wail!!!!!!!!! He was gone. Sam was gone, mad, upset. Only for 3 miles in the van.

"Sam, I spy with my little eye..."

That was all it took to bring him back. Now...if Grandma could please bring him back a little sooner too. Pleaaaaaaaaase!!!!!

A TWIST OF FAITH
Sometimes we take for granted those important people in our lives, and when they are gone, we miss them so bad our heart hurts. I know for me personally, that I take for granted all that God has blessed me with, and that sometimes the only time I seek Him, is when I want something back from God. I am soooooooooooo thankful he doesn't treat me that way. May we never forget all that we have been given.
~"For all things give thanks to God" (I Thessalonians. 5:18)

Down Time...(Journal#70)

2007-05-30T09:48:00.000-05:00

Have been taking some time off from blogging lately, as that is where I have prioritized some down time. Just been busy with end of the year routines for the boys with a transition to summer activities and planning. While we still have a week left of school, we have been working on IEP's and kindergarten transitions, summer therapy coordination, and big brothers soccer season starting!!!

Here are some updates on plans that have been made for Sam this past month....

Sam's plan for fall is a mainstream classroom for a little more than half of the time, continued OT and Speech therapy at school (pulled out for), and pull out to a special education classroom for the rest. We will also have some aid support if needed (ESP or para's as we call them). Sam is incredibly rule and routine structure bound. Once he figures out the routine of the day, he does exactly as he is scheduled. Where Sam struggles is in learning. His fine motor delays effect his handwriting. His speech effects the way he hears, understands and learns sounds. Phonemic awareness is key to beginning reading, and with his articulation disorder, that will make all of those pre-reading skills a challenge. Hence, this summer we are hitting it hard at home. But back to the fall....our district is still only half day kindergarten, so he will attend PM kindergarten.

Beginning in two weeks, Sam will be transitioning to a new speech program for the therapy we seek privately through a hospital here. For the last two years, he has received a half hour of speech two times a week individually at the clinic. In the new program, he will be one of 4-5 children on the spectrum with two speech/language therapist at the clinic. They will meet now for 2 hours twice a week in the mornings. He will continue in that program straight into and through the next school year. The first part of each session will focus on social skills and language through play, crafts, and learning, and the last half will focus on their individual speech goals. This will be great for Sam and will also work towards many of his IEP goals for school. In settings away from home, Sam has to be cued for everything. His IEP is loaded with goals of simply initiating words with peers to making requests from teachers, etc...We are excited about the new program "outside of school", as it will prepare him nicely for kindergarten in the fall.

This summer, Sam will have the speech program two morning a week, and four afternoons a week will be filled with t-ball and soccer. These are both programs that Brent and I will be able to help him with on the field if needed because of the age level. Our parks and recreation programs are great about adaptive play for special needs. We are excited to see what Sam does. His cleats and shin guards, and glove and hat are ready to start in two weeks!

I will try to update and post about 2-3 times a month throughout the summer. In Minnesota, we have to be outside as much as possible to enjoy the weather during these months, so that means a lot less time inside near a computer.

A Twist of Faith
So down time from blogging has still left my mind twirling with things to write about in relation to Sam and Autism. I have started about 10 posts in my head and as drafts, but down time on the computer is more time with family right now. That is always a good thing.

Just like our walk with faith. God calls us to use our gifts and to serve Him. Sometimes we need down time in one area of our church and faith life, but that doesn't mean we sit idle. It means we pick up our faith and church life in another area. It is about using every thing God has given us to serve Him, and that means different ways of serving, not stopping completely or not doing at all, it means just doing it differently. God is never done using us, for Him there is no down time.

: As each one has received a gift, use it to serve one another as good stewards of God's varied grace. ~ 1 Peter 4:10

Scream (shout) for Joy! (Journal#69)

2007-05-12T01:33:00.000-05:00

Two years ago this month was when Sam was diagnosed with Autism. It wasn't until a couple nights ago, when I heard Sam screaming with laughter in our backyard, did it dawn on me how far that scream had come.

Two years ago...Sam was three. Sam had a handful of words. Because no one could understand him, his main mode of communication would be screaming. You could see in his little head that he was trying hard to think of a word, it was as if he would try to figure out the word he wanted to say, but didn't know how, and a scream would always replace any attempt at a word. It wasn't the kind of loud ear thrashing scream when a child is hurt, it was more like a sound that came out of his mouth to represent a word. Once we figured out what he wanted or what he was trying to say, we would say the word, as any parent would, and ask him to repeat it. It wasn't until between 3 and 4 years old that he began to understand that concept much better.

When he couldn't find words, even with our constant reminding "use your words Sam, use your words Sam", and after screaming attempts at using words, he would take our hand and lead us to what he wanted. I have beautiful pictures in my memory of Sam grabbing Brent's hand and leading him around to communicate. It was always a gentle sight to watch. Seeing Sam's face light up once Brent would figure out what he wanted, as Sam took his father's hand and placed it on the object he needed, or needed help with.

The screams of fear. Those screams were different and it took me awhile to understand what they meant. Early on, I would blame poor Zach for his screams. They would be in the basement together when I would hear the high pitched shrill, and the idiot mom in me, would assume big brother had something to do with it. We had a video camera in the basement where I could watch when I couldn't be down there. When I finally paid better attention, I realized Sam's screaming had nothing to do with his brother hurting him (intentionally that is). Sam was a pro at creating his own space in which no one else could enter. Often times, if Zach walked within 10 feet of his "invisible wall", Sam would scream and start rolling on the floor like he was dying.
The only touch or closeness Sam would allow with Zach would be wrestling, which met his deep pressure needs.

Now the screams are less, the words more, and the joy always around. Listening to the joy of screams from some backyard frolic and fun took place last week as I was recalling how far Sam has come in the last two years. It is not to say that there are still days that are frustrating for him, and screams will prevail, but it is so much better. It was two years ago this month that we received our autism diagnosis. It was the beginning of figuring out how to communicate and understand Sam's needs. For the three years prior to that, there was confusion, feelings of inadequacy in parenting because we couldn't understand the delays, sensory issues, behavior issues and lack of speech. Receiving that diagnosis was a blessing, because it opened our understanding of Sam and his world.

A TWIST OF FAITH
In our families personal faith journey, it has been so important to praise (or scream) God in the high's and the low's. While He will never forsake us, it is important for us to never forsake God in both good times and bad, when we rise and when we sleep, but to praise Him for all he has done for us on this journey with Autism and that thing we call life.

On Friends....The Discrimination that Siblings Face (Journal #68)

2007-04-30T20:53:00.000-05:00

I am very proud to participate in today's Blogging Against Disablism event.

On my mind and heavy on my heart is my neurotypical son and the ways he has been discriminated (unknowingly) by his own peers. Zach is a wonderful big brother to our Sam with Autism. Being a big brother often bears extra responsibility in any family, but having a little brother with special needs draws even more responsiblity and challenges at times. From very early on, Zach has been aware of how some people observe us in public. The times when Sam is on sensory overload, dysregulated, and maybe having a hard time getting us to understand his needs when in a store. Then the screams come from Sam, the falling flat on the floor, then the glares from others to control our child. Zach notices. He lets me know when people are staring, or even following us all over Target as an elderly gentleman literally did for 20 minutes a few months back.

But...what I believe is hardest for Zach, is the way his own peers have treated him in specific regards to his brother. Granted, these are children who are growing up with Zach. I don't expect 9 1/2 year olds to truly understand Autism. I don't expect them to understand when Sam is suddenly angry and charging them in our backyard because they came too close to his "special space". I don't expect them to understand why he sometimes screams more than he uses words. Why his emotions don't match the action that Sam is doing. Why he may repeat things over and over or why he will run circles in the yard over and over. Why he sometimes acts like he is 2 or 3 instead of a 5 year old.

But...here is what I do expect. I expect that the children who come to our house to play with Zach are respectful. I always make sure the parents of the children who come understand that Sam has Autism. I tell them that if their child comes home saying Sam was screaming the whole time, that there are some days we don't even know why, but to use it as a chance to teach compassion. I have leaflets and info always available for parents to understand. But I wonder if they really care to sometimes.

I have heard Zach's friends say on occasion, that they don't like to come over to Zach's house because of "his brother". There are many times they are very rude. But, I forgive them. They are children. It just feels so unfair to me when I saw that Zach's friends were choosing to come over less the last couple of years because of his brother. It didn't feel right.

So...last summer, our backyard took on a new formation. Brent built a treehouse for the boys and we added a trampoline for Sam's Occupational Therapy. It helps with his vestibular issues and balance and coordination issues. Suddenly, Zach's friends start coming around again. They have figured out how to play some creative games of football on the trampoline and other crazy stuff. Zach has been in heaven having his friends show up a little more. But, again, he too feels it is just for his "backyard".

I reached my limit a week ago. I was pushed to it, because prior to this incident, Zach and Sam had started communicating and connecting in ways we really hadn't dreamed. Sam is letting Zach into his world more, even though he still dictates what to do. Zach is increasing his patience with his brother, because he really wants to be a part of Sam's play and world.

Then, on a nice afternoon, along comes two of Zach's friends. I have made it a practice to always be in eye and ear shot of any gatherings of Zach's friends when Sam is in the vicinity. Sam was off in his corner of the yard working in his "store" and sandbox. Brother and friends were playing their football on the trampoline. I was on the upper deck that we have, that overlooks the whole yard. Things were fine, of course, and I decided to step in the kitchen to lay some meat out. Apparently when I went into the kitchen. Sam witnessed Zach's two friends tackling Zach.

As we have pieced the story together, we believe Sam thought they were hurting his brother. Sam often confuses laughter as being other things, even anger or fear. According to Zach, Sam came charging up into the trampoline screaming "OFF! OFF!" and then pushed one of the boys. Now, mind you...Zach and his friends are almost 5 years older than Sam. Sam is 40 pounds, the other boys 70-90 pounds. Sam pushing one of them off of Zach is not a huge amount of force.

I enter the scene. But, I have to run down a full flight of steps and over to the trampoline. At this point, Zach is still laying on the trampoline from the first tackle, and now the other boys have started screaming at Sam and are laying on top of him pinning him down, as they are mad at him. Of course I am freaked as I am running down, as any mother of an autistic child knows what that kind of contact does to one of our kids. Sam was screaming a sound I had never heard. Needless to say, Sam's face was left with the imprint of the trampoline mat on his whole left side of his face.

Meanwhile, on my way over, Zach is screaming at them to get off his brother and pulls one of his "friends" off. That "friend" is furious with Zach and starts screaming at Zach and pushing him around. Next thing I know, Zach bolts out of the trampoline meeting me, crying and telling me to have his "friends go home, because mom, they hurt Sam and were so mean to him!"

I asked the boys to come see me (they are completely calm, acting like everything is fine), that we need to talk about what happened. In my head at the time, I felt I needed to explain what Sam saw when he looked at the trampoline, and how he thought he was protecting his big brother. The boys tell me "no" and continue to walk through our basement patio doors to go into the house to leave out the front door. I am like, "no they did not just tell me no, and not only walk away from me, but into my house". I followed right behind them to stop them at the front door. They would not stop, even with my pleading. I finally said at the front door, "Boys, you won't be able to play at our house again until we talk about what happened today and how to handle it next time." Both boys ignored me. As they left, Zach was hysterical. Crying and saying, "mom, I can't lose them as friends, I have to go say I am sorry, let me go mom". My heart was dying, and the next thing I know, is that Zach is flying out the door chasing behind them. He came back even more sad. Saying they told him it's "his brother" who always causes problems.

These situations have plagued Zach. We have tried to prepare his friends that come over. Every kid loves having friends over to play. Zach is resilient though. Thank God. His teachers always report how happy he is at school and how well he gets along with others. But dang it, the true friends are the ones that stick by you at school and away from school.

We are never afraid to tell people that Sam has Autism and are very open to explaining to people how to understand it and how to help their children understand it. However, people sometimes treat it more like they used to treat Cancer in the old days. Where they avoid it and you, because they don't know what to say. They don't explain it to their children because they don't think they will understand or get it, or that they just want them to see Sam as any other child. But...by not doing so not only effects the child with Autism, but also the siblings. And Sam is not just any other child. He has special needs that need modifications not just in IEP's, but in life, and his brother needs them too.

To deny that Sam has Autism, is to deny a piece of who he is. To deny that Zach is a brother of someone with Autism, is to deny a piece of who he is. Teaching how to accept others is not an adult concept. In fact, teaching acceptance has to start in childhood to truly attain an authentic appreciation of all individuals and who they are.

In my days as an elementary school counselor, I focussed a great deal on teaching children to appreciate differences on diversity of culture, ethnicity, socio-economic backgrounds, different abilities. In looking back...I don't think I ever encountered a curriculum or even thought about other family members and how the disability may effect them as well. Or perhaps how the siblings may encounter discrimination. Watching Zach grow in understanding his brother and how he explains it to others has made me very proud. He has learned so much from great resources like Sibshops sponsored by ARC. He is learning how to stick up for his brother. The fact that he was devastated at the way his friends treated his brother, and the fact that he is taking a stance with them in those situations will prove that even discrimination from some of his peers, will eventually lead him to people who are true and pure, and those real friends will last him a lifetime.

A Twist of Faith
2 Corinthians 4:16-18: "Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal."

April 30th, A Blogosphere Day of Silence (Journal #67)

2007-04-29T22:16:00.000-05:00

Autism Awareness Month celebrated in our Metrodome! (Journal #66)

2007-04-26T11:07:00.000-05:00

A cool thing happened last night at the Twins game. In honor of Autism Awareness month, a 13 year old boy with Autism lead the crowd in "Take me out to the ball game" during the 7th inning stretch. Kind of reminded me of Sam, and how he has been humming and singing before speaking as well. Check it out!

WCCO, Channel 4 Story

A Twist of Faith

I will sing praises to my God while I have my
being. - Psalm 146:2

Normal People Scare Me Too!!! (Journal #65)

2007-04-14T17:16:00.000-05:00

I looked up the word "normal" on good ole' Webster today. It defined it as follows:

of, relating to, or characterized by average intelligence or development b : free from mental disorder : SANE

So I further investigated by looking up "sane", and found it defined as:

1 : proceeding from a sound mind : RATIONAL
2 : mentally sound; especially : able to anticipate and appraise the effect of one's actions
3 : healthy in body

So I thought I would look up "rational":

1 a : having reason or understanding b : relating to, based on, or agreeable to reason : REASONABLE rational explanation> <rational behavior>

Must I continue? Because as I continued trying to define normal, I thought, who is normal all the time anyway? There are many days that I, myself, am not "free of mental disorder", and I know darn well there are people around me whom I would agree are not normal all the time, or as those of us in the autism community would prefer....typical.

I say this because, on Saturday, my oldest neurotypical son and I, enjoyed a wonderful event. An event in which we were able to view a movie I heard about awhile back. "Normal People Scare Me" is a film about autism, and created and documented by Taylor Cross, a brilliant 18 year old with autism. Taylor invited more than 65 individuals with autism or Asperger's Syndrome to describe their experiences on the film. Keri, his mother, helped him on the project that was produced by Joey Travolta, John Travolta's brother. Ironically, John Travolta has a 14 year old son, whom many believe is autistic, but because of their Scientology practice, are not allowed to call or treat it as such.

I am thankful for the efforts of our local Minneapolis group called Autism InfoGroup and Partner's in Excellence, and in collaboration with the Twin Cities ARC, who sought funding through local sponsors to make this event free. Keri and Taylor have been touring the United States and world this last year, and we were one of the first places to provide this free for families.

The day included break out sessions in the afternoon that allowed moms, dads and siblings to meet seperately and share their experiences with Taylor and his mother, who made the film, as well as Taylor's little brother, who is 11. Zach loved the experience of meeting someone else in the same situation as him. They became friends for the day, and even got to talk a little Nintendo DS chat. Zach thought it was "cool" meeting someone in a movie! Keri Bowers has dedicated her life to bringing awareness and acceptance into the community. She speaks volumes about getting our children ready through social and life skills training and has started camps in California for individuals with Autism to do so. She was very inspiring to me, and reassured me that Brent and I were doing things similar with Sam. She doesn't believe in sitting back with our kiddos with autism and letting the providers take care of the therapies that our kids do daily.

Keri has coined a term called "missions". That you create "missions" for our kids NO MATTER what level of the spectrum. They are going to be capable of doing whatever we believe. If we believe they can't handle certain situations in public or in life, and don't ever begin teaching them these things, then of course they never will conquer it. Even outings to the store need to be taught and practiced, and as Keri said, "do it 1,000's of times till they get it". Our kids need that to survive in society.

So a simple "mission" example is this....if your goal for your child is the best independence they can have in their adult life (which is ours), then you have to start "mission outings" NOW! Keri said that even for 3 year olds it is not too early, you just modify your short term goal. So, for us the last two years, we make daily outings into public with Sam. He has to learn to be able to go to a store as an adult, right? I think back to even a year ago. I dreaded Target with him. The flourescent lights, the sounds, and the smells were sometimes too much. But if you keep introducing them to the environment, they will eventually learn to cope. Yes, last week he still collapsed in middle of an aisle there, curling up in a little fetus position and wouldn't move because it was too much...but that is progress. I enjoy going to the store with him now. I am no longer afraid of what might happen. I love that he is going to point to every light that is burned out. I love that he is going to give them "free service as a stock person" as he lines up products that have fallen, or that are out of order when we walk by. I love all of that, and I can tell you that I would have NEVER said that a year ago. Our next "missions" with Sam at the store will be to make a list of some things that we need that relate to him (like shampoo or something). Give him his list. He has to look for it. Put it in the cart. Give it to the clerk and pay for it (with our money of course). Carry the bag out. Bring the shampoo in the house and put it in the shower. Sounds simple, but our kids need more of this, so that someday...they will do it on their own hopefully.

Below is a 10 minute clip from Taylor and his film. The full length is 90 minutes. This is an excellent resource to share with family and friends, who really don't understand what it is like for an autistic person. All of the interviews are with people on the spectrum, except for Joey Travolta, a therapist and some teachers and parents. This is also an excellent tool to use with your children's school and to offer to present as an inservice. Enjoy!

A Twist of Faith
After seeing the movie, I can see how normal people would scare me too! I scare myself sometimes too! :) God made us all so unique and special, and if he wouldn't have, we could never be the body of Christ He wanted us to be!
1 Corinthians 12:12-14 describe it like this: "The body is a unit, though it is made up of many parts; and though all its parts are many, they form one body. So it is with Christ. For we were all baptized by one Spirit into one body - whether Jews or Greeks, slave or free - and we were all given the one Spirit to drink. Now the body is not made up of one part but of many." This means each Christian is an equal part of the body of Christ!

Oprah's Show on Autism (Journal #64)

2007-04-05T23:47:00.000-05:00

I wasn't sure if I was going to post my thoughts of Oprah, and her "Faces of Autism" show, as I needed some time to process it all. But, here I go anyway. The Autism Blogosphere has been full of chatters, ranging from the disappointment of Oprah not doing her homework, but relying on the stats and info from Autism Speaks, to some of the negative views of Autism that the "Speaks girls" can portray, to the whole vaccine topic being thrown out again by the daughter of Autism Speaks founders, (the Wrights).

Yes, I had a lot of mixed emotions while watching it, and was gritting my teeth, mostly through the first segment hoping for some positive discussion and not just negative portrayal. I was happy for Oprah's attempt though, in doing the show, in getting the word out, so that we can continue to strive for more autism acceptance. That was the biggest blessing. Also, I loved the father at the end who reminded us all of how much we get from our little ones with autism.

The part of the show that was the hardest for me (believe it or not was not the part when Katie went mad about vaccines causing autism***) was the sibling segment. What life is like for a sibling. Ask Zach. I did, as we watched that portion of the show together.

I struggle with all the time I spend with Sam compared to the time I spend with Zach. It really hit home with me a week ago. Zach, our oldest NT son was sick. He is rarely sick. He had a high fever for a couple days, could barely walk, and was extremely out of it. He needed a lot of my time. I also just wanted to spend time snuggling with him and rubbing his hot forehead. Mothers of 9 1/2 year old boys dream of times like this, because those opportunities fade fast at this age. I hardly had time to take care of Zach it seemed. I recall myself actually almost yelling at Sam that he needed to go play, as he paced the foot of the bed back and forth saying then screaming over and over "tome on mommy, tome on mommy, tome on mommy". I needed to be Zach's mom and show him that as well.

I have written before about how we divide time as a family a lot. I am thankful for a husband who has kept up with our plan since the beginning of this journey, and that plan was to never take time away from Zach. Even though Brent travels a lot, he makes sure to do lots of regular things with Zach. They weekly enjoy chess and checkers together at a favorite coffee shop on Saturday mornings. They go for special walks around the lake. Zach and I sneak in playing some PS2 after brother is asleep some nights. But it still seems like there isn't enough time to give him the time he always deserves.

So, I did it, after we watched Oprah's siblings of autism segment, I asked Zach if he felt like the boy on the show. The boy who said he never got attention, that in fact he had to create his own little world, kind of like his brother's sometimes, that his parents are always giving his brother attention and not him. My relief was Zach's expression (that typical duh look that 3rd graders are learning to do so well) followed by a quick "I don't ever feel like that. Actually, I get extra stuff with you and dad that he doesn't." He then went on to refer our silly nights watching our tivo shows after brother is in bed, his favorite being the nights his father, him and I are laughing hysterically at Dwight on The Office.

A Twist of Faith
I am thankful for the way Brent and I are working together for this family, for being on the same page, for keeping our family a family. We had a friend tell us, shortly after we received Sam's diagnosis, that families with autism have a divorce rate of 80 percent, top that off with a husband whose profession also boasts one of the highest divorce rates...we are both thankful and blessed that God leads us both on this journey. Thankful that we have supportive family, friends and faith.
"always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ." ~Ephesians 5:20

(***Note~ for our family, our personal experience and belief is that vaccines are and were not a factor in Sam's diagnosis. I have the lot numbers from his vaccines to prove it.)

Tomorrow on Oprah (Journal #63)

2007-04-04T23:33:00.000-05:00

Heads up that Oprah's show on Thursday is devoted to Autism. I am sure it is in light of April being Autism Awareness month. Of course, it looks like Autism Speaks is getting more than their two cents worth again...so let's just hope that they show our kiddos not being "so horrible" but beautiful! Dang!

Martian Child and Autism Acceptance (Journal #62)

2007-03-31T23:59:00.000-05:00

It was a rainy day...a day deserving of making yet another appearance at our local theatre. Yes, even after last weeks attempt at "Mimzy", Disneys "The Robinson's" has been on our list for awhile. To add risk to this outing, our theatre was showing the digital 3D version. Let's just say that Sam gave it a big 2 thumbs up. But that was not the only thing that touched me at the theatre today...it was the previews. I was in tears during a preview for the first time ever.

Maybe I am a little behind the news, but I knew nothing of this new movie coming out in June, called Martian Child. You have already seen the trailer attached. I don't know about you, but this was screaming "acceptance" to me loud and proud. This little child, whether he is from Mars or not, sure does resemble a unique and special child who could be autistic or have Asperger's Syndrome. The lengthy trailer at the theatre displayed this adorable child in a manner that reminded me of some of the interesting, cute and quirky things that Sam does or would do. The way he examines his world like the boy checking out the trees in the car. How he appears to wear sunglasses frequently, reminding me of Sam's sensitivity that he used to have to light. The way the boy just wants to have a family and learn human"ness". I believe all our little ones are like that. I am telling ya, I had tears from the stupid preview, I can't imagine what the movie will be like.

But what I hope the movie "really" is like...is that it teaches the world a lesson on acceptance of everyone, not tolerance ( I HATE that word, we should never just tolerate others), but acceptance...acceptance for everyone- autistic or neurotypical, black or white, Jew or gentile, rich or poor, short or tall, skinny or large...but all.

The line that caught me in the preview was when the little boy says to John Cusack, "Is it good to be like everyone else?"

I can't wait to see this movie!

A Twist of Faith
With Holy Week here, I hope everyone is reminded of that incredible Savior who wasn't accepted nor tolerated and was put on the cross. Put there in fact, so that we all may live a life full of acceptance and love for everyone.

Rated S.O. (Journal # 61)

2007-03-25T23:27:00.000-05:00

As I have stated in earlier posts, we have learned to do a lot of things in our family in pairs. Zach and Brent do an activity while Sam and I do another activity. This, mostly because we want to respect Sam's needs and how he will handle certain situations. We have learned that there are some things that we won't try to do as a family because it would be too much for him and one of us would end up leaving with him.

However...family time is so important for us, that we have forced Sam to like a couple areas that the rest of us love, for the sake of doing it as a family. One thing we do "as family" is make sure we hit every family feature film as soon as it comes out. Sam has learned how to handle the previews. He covers his ears and then has me put my hands over his for extra support. The next time you go to the movies, check it out...the previews really are louder than the movie.

This past weekend we hit the theatres, with me convincing the men in my family that "The Last Mimzy" was a better choice than "TMNT (Teenage Mutant Ninja Turtles)". Uggg, being the mother of boys. Well my charm won all three of my boys over, and I got my way (or did I?).

This is a warning to all parents of autistic little ones. "The Last Mimzy" is not autism friendly. Sam and I had to leave a little before halfway through. For our little ones that deal with a lot of sensory issues, this movie has them. There are lots of flashing lights, blue and white to be specific. Along with the flashing lights of Mimzy's gear comes a high pitched hum whenever the Mimzy stuff communicates (which is a lot). It was just too much for Sam. So, instead of just rating this movie PG, it should also be rated S.O. for sensory overload!

On a side note. I didn't want to leave. I had loved the movie up to that point, and it also received high reviews from Zach and Brent, so on a personal note, I would still recommend this movie (just not for our little ones who already have sensory issues).

A Twist of Faith
Sometimes we learn through trial and error. I don't believe that it is error in having Sam learn to enjoy the things we like as a family at times, as he is part of our family. God created us to be together as a family. Just as we are learning about his world, he too is always learning about ours. What was an error was us not really checking out the reviews for that type of setting.

Let us consider how to provoke one another to love and good deeds, not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day approaching.

-Hebrews 10:24-25 (NRSV)

Ch-Ch-Ch-Ch-Changes.....Part 2 (Journal #60)

2007-03-21T21:27:00.000-05:00

“When you’re finished changing, you’re finished.”—Benjamin Franklin

....as David Bowie sang, "Ch-Ch-Ch-Ch-Changes...." I hope are coming our way. We have made some changes with Sam this week.... (This was the beginning of my post on February 28)

Just wanting to do an update since we have started Risperdal. Have received lots of e-mails from those of you who have had experience with it, and we want to thank you all for them.

At this point, we are still in the honeymoon stage. Sam started it a month ago next week. We have our follow-up appointment with our pediatrician to see how things are going next Friday.

Dosing:
Sam is on .5 mg a day in tablet form. We have the option of increasing to 2 tablets a day for 1.0 mg. We started out with low dosing, increasing every 3-5 days to where we are. We have been at this level for a full 2 weeks. If things change, we will then increase to 1.0 mg a day.

The honeymoon:
We have been "amazed" at the difference seen in Sam. We are pinching ourselves and almost trying to be a little apprehensive, so that we aren't too disappointed if the honeymoon ends. The two behaviors we wanted it to address have worked at this point (knock on wood).

Behavior 1~ When he is having melt downs (was averaging 2 major ones a day that would and could last at least an hour each time), he has become very violent, and quickly hurts anyone and anything in his way.
Ch-Ch-Ch-Changes~ We have had only 2 items thrown in a month and nobody else hurt in that time (big brother, usually the target, is very grateful).

Behavior 2~ During his melt downs, he has become self injurous (not uncommon among autistic children), but to the point that they were increasing in degree. They would range from head ramming, hitting self, to throwing himself down the stairs.
Ch-Ch-Ch-Changes~ He has not hurt himself once in a month.

It was incredible in church on Sunday to hear people telling me that they were noticing something different about Sam. He seemed happier they said. They also commented that it appeared as though he were interacting more too. I speculate that he isn't feeling the anxiety and frustration that would lead to the melt downs. Hence, we have a little boy feeling more comfortable expressing himself with others, even if they don't understand him at first and even if he isn't sure how to.

It is not that this is "the miracle drug", and I know medications are not the route for everyone...but for us right now, we are thankful for the Ch-Ch-Ch-Changes. We continue with our other therapies as well, but this has been a change we have waited for.

A Twist of Faith
Just as autism is treated in many forms, behaviorally to medically, there is not just one tride and true method that provides therapy and treatment for this disease. Each child with autism has a variety of symptoms and degrees of each. The point is that there are many ways to work with the whole child.

Faith is the same. There is not just one way that we seek God and worship him. There are many. What is important is that we intentionally seek him out in all areas, including daily prayer, worship and service. We have to be many things to him, not just one mode.

Medications aren't our only source of work with Sam, and prayer, worship, or service can't be the only source of work for God. It must be many combinations in all those areas, and in many ways, that is in constant service. For one to say "I pray", that is good enough, is never good enough (that is just my personal belief). We should always have Christ as our focus in all that we do.

We know that all things work together for good for those who love God, who are called according to his purpose.

-Romans 8:28 (NRSV)

The Candle (Journal #59)

2007-03-13T19:09:00.000-05:00

The thing that I had decided since Sam was 2 , was that he was going to learn to talk, he was going to use words and not screams to communicate. From age 2 to 3 years, there wasn't a whole lot of progress until we received our autism diagnosis around 3. After learning everything we could about autism, I then decided that, not only was he going to learn to talk, he was going to have receptive and expressive language, joint attention , as well as reciporcal language, some of the most challenging speech areas for our little autistic ones. I did/do my own form of "ABA" therapy. I have been in his face, making him repeat (without rewards), having real conversations but by telling him what to say, making eye contact if it meant making my eyelashes touch his, all of this "in your face" method since he was 3.

Sometimes I don't know what he remembers, or how much info is too much or too little for him to retain. But this time he conversed with me about something I didn't know he knew. My little sister died 4 years ago at a mere 31 years. Sam was only 17 months at the time. I keep a picture of her with each boy in their rooms. For Zach, I want it to remind him of the times he had with her. For Sam, it has been there so that some day I can share with him who she was. He doesn't remember her of course, but he too has the picture in his room. I can't remember when I have said anything more to him on any occasion other than she is my sister. I know he remembers a lot, and maybe he has heard conversations with Zach and I, but last night was the best.

Last night at dinner, we were lighting our (electric) candles as we do each time we eat for someone we need to pray for. For the last three months, Sam has lit a candle for a boy in his class. He says the boys name every meal.

Last night he said to me "tee tandles" (three candles).

Who are your three candles for Sam? I asked.

"bantie" (the blanket his Aunt Darla made got wet today and he was very upset about it).

"Neal" (the boy in his class)

"mommie's titter" (mommies sister).

Sam, why are you praying for my sister?

"see died, in heaben" (she died, is in heaven).

He broke my heart with happiness. Maybe he understands so much more than I ever give him credit! I love him!

Below are pictures from the last time he spent with my sister before she passed away.

See my Tabblo>

A Twist of Faith
Philippians 1:21 "For me to live is Christ and to die is gain."

If You're Happy and You Know it...(Journal #58)

2007-03-08T16:49:00.000-06:00

...thump the person behind you. Forgive me, but that is what I felt like doing today but knew better not to. Why? I will fill you in on that later.

Because the best part of today was the dream date I had with someone I love dearly. Sam. We had two tickets to the tour of "Go Diego Go Live". We have had them for awhile and have been counting down. The performance was in the Hennepin Theatre District in downtown Minneapolis, at the beautiful State Theatre, shown below. We were only a few rows from the stage. It was awesome. Sam was super happy. He has two extreme's of happiness that one must know about him. One is the "super silly, spinning around, smiling, laughing, can't stop moving" happiness. The other is the "this is serious, don't talk to me, don't touch me, don't sing to me, just let me be to enjoy this" happiness. Both of them are as equally happy times for him, of that only a mother can know.

So, the usher gets us to our seats, I just sit down, and there is a tap from a father behind me, "Mam, could you please change seats with your son so my daughter can see?" I quickly nod my head and exchange seats with Sam. I place my hands under his arms to lift him so that it will be smooth and quick, but Sam doesn't want to move from his seat. I turn back to the gentleman and tell him that it may take awhile to get him to move, that I would try again in a little bit. Under his breath I heard him say, "and who is the parent here?" I chose to wait before trying again, because I do have a little experience with my son, and while yes, I am the parent, I don't think the man behind me would like to hear the shrilling "noooooooooooooo" that would emerge, as well as some jostling of the body parts from a meltdown, that could result in elbows reaching the row behind us where he sits. (Editors note: however, even though we are a week into Risperdal, and things have been great, I didn't want to test the waters.)

I let Sam sit, for a few more minutes. I thought if I asked him if we could take his coat off, that it might losen him up a bit. He firmly told me no "toat on". Now, if you didn't know Sam, and you looked at him compared to every other kid in that theatre, you would have thought there was something different about him, but in my eyes, it was just his different way of thinking. I knew exactly what he was thinking. He had looked forward to this day for a long time. He was so excited. He was enjoying it and taking it all in. The lights that pulsated around him. The familiar music pounding from the speakers on stage. The fuzzy seat that rocked up and down. He was "seriously" enjoying it, even though his face seemed intense. Okay, so back to the changing of the seats saga. I found my moment to slide him over to my seat with ease, at which point he finally agreed to take his coat off very slowly. I refused to look at the row behind us to acknowledge our compliance.

As the show continued, parents and kids were up singing and dancing together. Parents singing the Diego theme songs, smiling with their youngster. Sam didn't want me to smile today. He made that very clear every time I tried to look at him. So I didn't push it. I just watched him when he didn't think I was looking. He remained in his seat, just watching all the motion around him, but you could tell that he was just taking it all in the way he wanted to. While those that know me, know that I don't just like to sit, and that I too would have rather been up singing, acting silly and having fun. This little ol'e elementary teacher knows how to act silly with the best of them. But I needed to be what Sam wanted on his special day. I was just fine, until...

...intermission...and the wonderful gent sitting behind me just couldn't stop being "father of the year".
"Wow, you two sure know how to have a good time and live it up! He doesn't seem real happy to be here. " he said.
I replied, "On the contrary, he is delighted to be here. He is just taking every ounce of it in. That is how he enjoys himself. "
I turned back around and asked Sam if he wanted to go for a walk. Quick exit needed before I started talking snitty.

What has Sam taught me? I have mentioned before that he has taught me to better understand the diverse ways we think and communicate and to respect everyone's differences in regard to that. I have learned that Sam can be happy but look serious. I respect how he wanted to share the joy he had of seeing Diego today. So therefore, I must respect that "father of the year" just has not had the opportunity to experience many people in his life that are different than himself. And for that, it is not his fault that he doesn't understand my son nor me in our short encounter. I am not learning anything from Sam and his Autism, if I can't apply it in life. Dear "father of the year", I do commend you for being a dad, who took time to take his daughter to a great show, I commend you for wanting to live and enjoy life to its fullest, may you never lose that. And I, I will respect you for who you are and what you said, not what I would have preferred you to be or to have said.

A Twist of Faith
If you're happy and you know it...shake hands and make peace!!
Maintain good conduct among the Gentiles, so that in case they speak against you as wrongdoers, they may see your good deeds and glorify God on the day of visitation. 1 Peter 2.12

Ch-Ch-Ch-Ch-Changes.....(Journal #57)

2007-02-28T18:57:00.000-06:00

“When you’re finished changing, you’re finished.”—Benjamin Franklin

....as David Bowie sang, "Ch-Ch-Ch-Ch-Changes...." I hope are coming our way. We have made some changes with Sam this week....

As I have shared some in the past, Sam has some pretty aggressive and violent melt downs. The above picture was the look I received before a huge meltdown on vacation this summer. Shortly after this pic, he threw his items and went running away through a crowd. It happended because I wasn't walking the way he wanted me to walk along the crack in the sidewalk he was following. I couldn't understand how he wanted me to walk, and BOOM! We have aggressive/violent meltdowns a couple times a day, and they can often times last as long as an hour. This past year they have increased in length, aggression and frequency. While having meltdowns is nothing new in the autism world, these meltdowns have been changing in complexity for us. Sam will go from one extreme emotion to another in seconds, and usually with no warning. Most of his incidents are related to communication or frustration on his behalf. While Sam is verbal and uses language, he doesn't always know how to communicate. He can't tell me when he is sick, or his specific needs at times. Sometimes it is a simple word he can't remember to say. Like the other day, I had given him a cup of yogurt for a snack but forgot to give him a spoon. He came up to me and kept saying over and over,

"I need, I need, I need..."

and of course I would respond with "what?"

He would then respond "don't know, you know" "det it for food!" (get it for food)

"I need, I need, I need..."

"Sam, what do you need?"

"don't know what talled! Det it! Det it! I need, need, need!!!"

At that point I had just figured it out, "spoon?"

Too late. "Yettttthhhhhhhhhh" (yes) Sam screamed with agony. "I fordot, NO MORE!" He forGot how to say spoon, now he was mad, so forget it, he wasn't even going to eat.

So, next came the chair, then the plant, then all the picture frames and head ramming. That is his typical order of destruction when in the kitchen area. He quickly goes after the wooden kitchen chairs and throws them backwards onto the wood floor, he rounds the corner and grabs my plant, pulling it by the branch across the floor until the dirt spills, then he proceeds to every picture frame in site and slams them face down, following with his usual head ramming or banging. All of this in a matter of explosive seconds out of nowhere.

So, then you may say this to me, "you know what happens, move things, prevent it, stop him, then consequence him."

That is so much easier to do with a neurotypical child. If it were our oldest that did that, we would, because he would learn the first time he had to clean up the dirt, pick up the chairs, etc...that the behavior was not acceptable. Zach would understand the first time.

With Sam it is different. (Which yes, creates another whole post someday on the challenges of having different rules and expectations for children and siblings of those with special needs. Unfortunately, it could be a book of explainations.)

I won't put away the picture frames. They are pictures of family near and far, and it is an important staple of our family and how we share memories. They will continue to get slammed and broken by Sam, and I will continue to buy cheap wooden ones that are replaceable. The kitchen chairs....well, that would be a pain in the butt to not have those out. So, that leaves the plant, the easiest thing to move. Now that may just be me being lazy!!!! :)

This example of a melt down is actually quite mild for what his are like. He has attempted to hurt himself many times, which self-injurious behavior is also common with our little autistic kiddos, because they get so frustrated and don't know what to do. Sam will actually bang his head into things or sometimes attempt to actually throw himself even down our stairs. He will bite, kick and hit when being restrained (who wouldn't) from hurting himself or others. We have created a safe place for him during these situations in his bedroom. But...our concern has been great over the last several months.

Hence, this past Monday, Sam had a check up. And...we finally started the "autism drug" of Risperdal. I could hug and kiss our pediatrician. We have had 3 days without ANY meltdowns. Two of those days have seen zero beginnings of any tantrums. The first day, we had several start, but I was able to redirect them, which I haven't been able to do for over a year!!!!! I know I shouldn't get too excited yet, but this is HUGE!!!!! I can't wait to see what kind of effect this will have for Sam. He seems a little different too, more receptive, more at ease. I know that there are many people in the autism community, who would not seek the use of medications to change behavior in our kiddos, and I respect that. But, if this helps take some of the frustration that Sam has to encounter everyday away, it will be very worth it. Oh yes, "ch-ch-ch-ch-changes" are in the forcast. Changes that we look forward to.

A Twist of Faith
Sometimes we are afraid to give our lives fully to God. We are afraid, because that would require a change. But, when we do, I can only say that the change is truly for the better.

Jesus said, "If anyone is thirsty, let him come to me and drink. Whoever believes in me, as the Scripture has said, streams of living water will flow from within him" (John 7:37-38)

Answers not needed for Shalom (Journal #56)

2007-02-14T21:46:00.000-06:00

It was just the boys and I this Valentine's as we missed dad, who was out of town on business. So, I had pledged that it was "all boys, all night". No interruptions from the outside world, no doing housework on their time, no "have to" stuff, just me and my boys.

It all started out fine, as Zach had some time to enroll his latest Webkinz that Brent and I gave him for Valentines. He was so excited that he now has 4 of them. He also was trying so hard to show Sam how to set his Webkinz up on the computer, but Sam paid no attention. He just sat on the floor by his brother lining up his legos and blocks. Zach was trying so hard to pull him in, and Sam didn't even flinch, or notice his brothers desperate attempts. I say the evening started out fine, it was peaceful. A shalom sense that we hadn't had for awhile.

So, it was my fault, I broke the silence. After a couple of phone calls (that I already had said I wasn't going to take, but in these cases they were both important family members) I got on the floor and tried to draw both boys in together for play. They started a little, Zach being so patient, and Sam dictating who would touch what and when. I decided to slide back a little and watch it pan out, in hopes of it turning out a little more different than it did yesterday when Zach tried to build forts with him. But no, same ole' thing. Sam insists on everything his way, and Zach desperately wanting time with his brother, concedes, just to have time with him. I am always so impressed with Zach.

As the night wore on, I was debating how to transition Sam to bed. He has been on Clonidine for a year now, of which his larger dose is saved for bedtime to help him sleep. Sam's sleeping history prior to this was his being awake from midnight or 2AM until morning. Ever since Christmas, he has fallen back in this pattern of waking up, except this time it is with very agressive melt downs. Sometimes I think they stem from dreams, other times I don't know.

So, my transition for Sam's bedtime is forming in my head, but Zach also wants my time to listen to him read his Series of Unfortunate Events book.

I don't have time to make a plan, as Sam had already started. Started... what I sometimes call his "full body stim" time (while you won't find this definition under classic stereotypic behaviors of stimming). Sam's stimming usually consists of smelling and sometimes licking objects, and tacticle stims, with the need to rub his hands on other peoples skin. The more vestibular stims are his "full body" ones. Sometimes this is just pacing back and forth while talking, talking, talking (could seriously last hours while he completely retells his most recent movie in story form but with exact word detail), or sometimes he does what we call "head ramming", because it isn't just head banging, as he gets running starts and rams his head into whatever object or person repetedly. The latter is what occured tonight for almost an hour and a half. I could not stop him tonight until he crashed from exhaustion. Deep pressure didn't work, his weighted blanket didn't work, his "soft area" of his room didn't work, the big pillow/bean bag method didn't work. It went on and on and on. He was running all over the house ramming his head.

The fact that he hardly ever feels pain didn't help tonight, as several times I had to stop him from ramming his head into the hard doors, walls and bed frames. He just doesn't seem to care what happens to his little body when he engages in this.

After a full hour and a half of trying to keep him safe, and keeping his brother in a seperate part of the house self entertaining, we were both exhausted. His little body finally collapsed on my legs on the couch. As he instantly fell asleep, I just sat there looking at every little bone in his body, because you really can see them. He gets that from his dad. I was utterly amazed that something wasn't broken from all the thrashing his body took during this episode.

All I can think of when we have these episodes is how can we protect him? How can we keep him safe, and his brother safe when these incidents occur. Tonight, in my attempts to restrain him a couple times to keep him from banging his head on the corner door frame, he bit me. I really don't think he knows he is doing it until well after the fact. But while it is going on, there is some need trying to be fufilled, I just wish I knew what?

My Shalom for the night was gone. Or was it? Maybe Sam needed to have this "head ramming" episode so that he could have peace for himself tonight. Maybe he needed to get this out of his system so he could calm himself to sleep? That I do not know. What I do know is that I still respect his needs, and will never hate what he does, even though it is exhausting. It is this video below, from an autistic person whom I have learned much from over the last year from her blog, that helps me understand. While Amanda is non-verbal, she can definitely communicate. You must watch this video she made last month in response to "Ashley X" . Watch it in its entirety to get the full understanding. Amanda translates towards the end of the video. It has helped me to understand in a much deeper way what stimming does for Sam, why it is so important for him to react to every little part of his environment. Perhaps the most important reason, as Ashley writes, is that we don't need answers for why he does some of his things, we just need to understand. That will give him and us the Shalom we need without an answer.

A Twist of Faith
Shalom doesn't just happen, it requires us to seek it through understanding others and the world.
Seek peace and pursue it! ~ Psalm 34: 14

5 Alive!!! (Journal#55)

2007-02-08T22:33:00.000-06:00

It's all about 5! Happy 5th Birthday Sam!

This is journal entry 55, it's Sam's 5th birthday, so I will honor him with 5 things he has given and inspired us with:

1. Sam has taught us how to accept everyone and love everyone for who they are. Even though I was a teacher for many years, I thought I knew everything about diversity, accepting others, working and respecting children of different abilities. But... I really didn't, until Sam taught me. He showed me that it is okay to learn differently, it is okay see life differently, it is okay to be you. And when you accept yourself, I have learned that accepting others comes even easier.

2. Sam has shown me that you need to take time for the little things in life. I am a "doer, gotta keep going, gotta get everything done, because you have to accomplish big" person! When you are like that, you forget to notice the little beautiful things in life. While Sam's incredible attention to detail can drive me crazy ( like when it is 30 below zero, and I just want to walk from our car into the store as quickly as possible, but he has to follow every little crack in the pavement or pick up every little icecicle along the way), it can remind you of the beauty life gives us. Perhaps it was our vacation to Yellowstone, that I really began to appreciate his ability to notice and find every little thing. I would be looking at the whole beautiful scenery on our travels, and it would be Sam that would stop me and pull me close to the ground to spot a little ant crawling up a beautiful flower growing along the path. It is the little things in life that help us get to the big things.

3. Sam has reminded me to take time to listen to the music. Again, teaching me to slow down and relax. Music has been Sam's thing since birth. Before we could ever understand one word from Sam, we always knew the tune of what he was humming. He can reproduce any sound (literally, including the grinding sound of our coffee machine) and any song after only hearing it once. Sometimes when he is in the middle of the worst melt down, I just throw on the IPod with some tunes (usually Backyardigans "Secret Agent"), and he completely changes and calms down (wish it worked every time). Many times, in any foul mood, he will turn it around as soon as he hears music. We all need to stop and listen more, and enjoy the music of life.

4. Sam has helped us accept autism. We are "at peace" with Autism, as Susan Senator so eloquently wrote about in her book, Making Peace with Autism. He has taught us that he is autism, he is autistic. It is a part of who he is. We can't hate Autism, because that would be hating a part of who he is.

5. Sam has given us 5 years of 4 L's. He has allowed us to love him unconditionally, to enjoy his laughter (even though we can't laugh with him), to continue learning about how he thinks and learns, and to live life fully.

We love you Silly Sam. Happy Birthday!

A Twist of Faith
As I said, Sam has taught us how to love even greater with acceptance like no other. No other, than like that of Christ's that is. Look up His greatest commandment again, remind yourself of what He calls us to do. For if all people upheld this scripture, it would be an easier place in this world to have Autism, to be a parent of an autistic child, to not worry about being judged by others on how we take care of our little boy in a world that can seem so overwhelming to him most of the time. John 13: 34-35

What's so wrong with that? (Journal#54)

2007-02-04T00:41:00.000-06:00

Saturday Sam had his "friend party" for his 5th birthday, even though it is not until Friday. Sam had clear direction on what he wanted for his party.
"C tan tum"
" D tan tum"
"E tan tum" (as he listed who would come)
"Dat's all"
"Nobotty ting happy birty" (and absolutely NO One will sing happy birthday, he hates that, he always says it hurts his ears).
"We hab piwut sip on da beat too. Hab to hab a beat." He thinks we have to have the party on a beach where there is a shipwrecked pirate ship. Hmmmm...that one we will need to modify.

Simple enough, we can do everything else! Two of the three have autism also, and are in his class at school. One is a little 3 year old neurotypical friend from church. I will call her Grace. Because, that is what she provided all day...Grace. Only one of his autistic friends was able to come. It was a perfect size. Three counting Sam. There is that little rule of thumb you know, that you should only invite one child per year. So at this stage of the game, 5 friends might be appropriate. We did not know all of the needs of Sam's autistic friends, so we decided to keep it low key and at our house and stick to what was best for Sam and everyone.

The theme was a pirate theme, one of Sam's interests of late. We went on a treasure hunt all over the house to find parts of our costume, the hat, the earing, the eye patch, the parascope, and the last thing was the treasure itself. We stuck with Sam's wishes to not sing happy birthday. We had a ratio of 3 adults to 3 kids. Sam had 3 or 4 melt downs that included screaming and throwing things. Brent gently took him to another room each time, and I continued on the treasure hunt with the other kids. It made me kind of sad that he was missing his own party at times. He would always come back and join us when ready, and the other two didn't even know he was gone.

After the party, his school friend went home, but "Grace" the 3 year old friend from church stayed to visit with her mom and us. Sam had quickly set up his fort. He takes his toys and lines them up and builds them to enclose him, along with a door. He has obsessed about doors since 2. After he creates this little fort of toys. He sits in the middle of it and won't let anyone come near him. He does this all day with his brother usually, and at church as well.

Here we go again. Poor Grace just wanted to come in and play with Sam, but no. She was so gracious. She kept coming over to his door smiling. "Sam can I come in?" "Sam can you play with me?" He would growl "NO!" She would smile, say okay and go play with something else for awhile. She would entertain herself by getting toys from the toyroom and bringing them out to where Sam was. She would parallel play beside him until her next attempt. However, when she wasn't looking, Sam would snatch her toys she brought in and add it to his walls, as if to build them up higher. If she found out before I could get to Sam to give them back, again she would graciously smile and say "It's okay Sam, you can have it." Wow! Gracious for a 3 year old. She just wanted to be with Sam so bad, she did not care. Times like this, I wish he were more neurotypical, to experience the joy of playing with a friend and sharing that love. What's so wrong with that?

I also get a little weepy, when I think back to all of the friend parties we have had for his big brother. We could plan them most anywhere with anything, animal parties at the Nature center, Chuck E Cheese, bowling...Sam very much so wants those things too. He expresses it, but it is too overwhelming for him at times. When he had his melt downs on Saturday, I kept flashing back to Zach's 5 year old space party and his friends. Zach laughing and being the center of attention and loving it. Zach wanting to play with EVERYONE. I wanted Sam to feel that too. What's so wrong with that?

Yes, Brent and I make accomodations for Sam to help him and do what's best for him. We will always do that. But as much as we love him and do that for him, we too are human, and I believe it is okay if we wish and wonder what it would be like if he didn't have Autism. We are not dehumanizing him in anyway by doing so, it is just us thinking. If people don't ever question the opposite of who they are, they don't ever appreciate or have a deeper understanding of who they really are. What's so wrong with that?

A Twist of Faith
God made us all human. And for that I am forever grateful!
"All have sinned and fall short of the glory of God" (Romans 3:23)

Held (Journal #53)

2007-01-31T01:28:00.000-06:00

As our youngest little guy turns 5 next week, I have been doing a lot of reflecting lately. Been doing that "hind sight is 20/20 stuff." Remembering the symptoms that Sam displayed, that we didn't understand at the time as being Autism.

Looking back we remember his lack of speech, and how much we spoke for him. He could not speak to us in a way we could understand. Brent reminded me of how he would not really point to things he needed but he would lead us by taking our hand, well past the appropriate age to do so. He wouldn't always respond when we would call him, and often times acted like he didn't care. As I have shared many other times, he did not "need" to be held, but I needed to hold him. He didn't like that I would pick him up when he was content to be alone. He made that very clear by his screams. I remember thinking that something must be wrong with me. He must not have "bonded" with me. I was on a mission to make him bond with me. I really couldn't share these concerns with anyone at the time. Would Brent think I was not being a mother to him? Would my girlfriends think I was ineffective if I told them I didn't think Sam was bonding with me? What baby doesn't connect and bond with a mother.
How embarrassing to even discuss with anyone, not even a pediatrician?

Sometimes when Sam would wake up at night, I would just stay awake holding him, even after he was done with his cry or feeding. While awake he would arch his back as if to pull away from me. Sometimes I would think it was the bottle causing him to have gas or something. I would watch him though. He wanted away. I remember one night, when he was 1, and more mobile, but not even close to walking, that he awoke. He screamed for almost an hour. Nothing would soothe him. I finally just laid him on the middle of the floor on nothing. He rolled over and sat himself up. He looked at me while wiping a tear, and literally took a deep breath. As if it was a sigh of relief that I finally put him down. I remember the light bulb going off. "He doesn't want me to hold him." He doesn't want held.

I continued with Sam, what I called my own "holding therapy". The one place where "holding therapy" was effective (but not to my benefit) was when I would drop him off at childcare. For the 3 years he was in childcare, I dreaded our morning routine. Perhaps I was too accustomed to his big brother who never had adjustment or transition issues. I could always drop off his brother at childcare, give him a kiss and away to school to teach I could go. Sam would start having anxiety as soon as we pulled in the parking lot. He would become stiff in his carseat. He refused to walk in. Once in the room, he would want to be "held", and he would cling to me for dear life and scream at the top of his lungs as his caregivers would gently remove him from me and continue to hold him. We tried every transition, every soothing toy, quick departures, come early and stay longer departures. It was exhausting. His teacher would call me at school each morning, about an hour later, to tell me he had finally calmed down. She was always worried that the picture of him I would have in my head, would be his face full of fear of being left there. After I would leave each day, he found solitude under an art table, where he would rarely come out, except to go outside for recess.

A Twist of Faith
My baby turns 5 next week, and we have the faith to know that he will not only be held by us but in God's arms forever. Below is a video of one of my favorite Christian song's by Natalie Grant. To know His faith in us, and to do His work and love is to be held by Him.

Natalie Grant - Held

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His Footprints (Journal#52)

2007-01-21T21:44:00.001-06:00

The bus had just dropped Sam off from his LEAP Program at noon as usual. Instead of darting off to the front door he ran to the gate to go into the backyard. With a fresh 4 inches of snow, Sam was back at it. Back to living outside (which he would seriously do). In the summer he digs in his sandbox all day, and in the winter he digs in the snow.

"tay mom, tay mom, tay mom...." he kept saying, as I stood at the entrance of the backyard, where Sam was already running all over. He wanted me to stay where I was and not enter his domain. I watched him intently for awhile. He methodically was making something in the snow with his footprints, what... I did not know yet. I let him continue for awhile, and then remembered that his pancakes were getting cold on the table, and that we also had therapy that we needed to go to.

I continued to watch his serious little eyes as he scampered with purpose making footprints. I could tell that I should not walk into the yard to get him, as it would upset him and the patterns he was making. Finally, after much coaxing, and the need to get to speech therapy he stopped in his tracks, looking at me like he might run, but he wasn't sure. I kept thinking that I had to stay at the gate, in case he did dart, as he frequently runs away and straight to the street.

As I stood waiting to see what he would do next, he calmly said, "tay mom, tay mom, I tum, I tum." With relief, I knew he would come and he meant it. However, I did not plan that he would not allow himself to just walk straight to the gate. He started retracing every step he had made the last ten minutes, making certain not to step on any untouched snow. Of course I did not notice that at first, so I started coming toward him, to hold his hand and make sure he went into the house with me.

Bad idea. I made steps in untouched snow. He only wanted his steps, his creation, and his pattern to be revealed to whoever would see it. A meltdown began that continued for some time. If only I would have had a little more patience to allow him to retrace his steps, as he wanted to walk it alone in his own time. We all learn. We learn what battles to choose and which things to let go. After this meltdown, I should have let it go. After a few more snowfalls since this incident, only Sam's footprints are allowed in the backyard, and the rest of us have learned to have snow fun in the front yard. I am thankful for the patience and grace his brother has allowed with this. Thank you God!

A Twist of Faith

Footprints poem:
One night a man had a dream.
He dreamed he was walking along the beach with the LORD.
Across the sky flashed scenes from his life.
For each scene, he noticed two sets of footprints in the sand: one belonging to him, and the other to the LORD.
When the last scene of his life flashed before him, he looked back at the footprints in the sand.
He noticed that many times along the path of his life there was only one set of footprints.
He also noticed that it happened at the very lowest and saddest times in his life.
This really bothered him and he questioned the LORD about it:
"LORD, you said that once I decided to follow you, you'd walk with me all the way.
But I have noticed that during the most troublesome times in my life, there is only one set of footprints.
I don't understand why when I needed you most you would leave me."
The LORD replied: "My son, my precious child, I love you and I would never leave you.
During your times of trial and suffering, when you see only one set of footprints, it was then that I carried you."

Some Boy! (Journal#51)

2007-01-12T13:51:00.000-06:00

Days have been a little challenging lately, which has left me little time at the computer. And of course, the computer is not a priority, especially when Sam needs me. I think we are still coming off of holiday travels, schedule changes, and Sam getting his cast off. He can finally wear long sleeves as the Canadian air finally arrives in Minnesota this weekend! Hence, this post will be brief.

I am sharing a painting Sam did today. The Early Childhood Educator and mom in me can be sad sometimes when I look at neurotypical, "almost 5 year olds", like Sam and their fine motor development. Sam hasn't really created any drawings that we can identify as objects, he can't write his name or any letters in it, and he has done (what appears as) scribbling with crayons up until this point. The one thing he can do and does every day is paint. He LOVES to paint. I think because there is a little more freedom in movement for him, and he loves the motion of going from the paint to the paper and back.

I had not realized, until Sam, how important coloring in the lines is for fine motor. I had always been against coloring books in early development, because I was always more about the creativity and freedom of expression and development. Our older son did not really acquire coloring books until kindergarten. With Sam, I have now seen how important it is for helping with his fine motor and hand control.

Today he did it. He painted in sections! While I am still about "thinking outside the box" and not having to stay in the lines, I am really proud of his painting today. You can see where he was trying to color certain sections, which for us, shows big fine motor growth for him. More than we have seen in awhile. Some Boy! And proud of him!

A Twist of Faith

While I haven't had much time to devote to the blog the past couple weeks, it is because the time allocations had to switch to one of our priorities, my family and Sam.

Just as we get busy with life, we must remember to prioritize our God time. To imagine what would happen if He said He was too busy for us, I don't even want to think.

Your heavenly Father already knows all your needs, and he will give you all you need from day to day if you live for him and make the Kingdom of God your primary concern. ~ Matthew 6:32-33

Plan B...(Journal #50)

2006-12-26T07:23:00.000-06:00

Sensory needs and issues are big with our little ones with Autism. Things that would barely bother us can be extremely distracting, soothing, hurtful, or helpful to children with Autism. While we didn't understand Sam's sensory issues early in life, we quickly learned more and understood them after finally getting the Autism diagnosis.

So, to include Sam in everything we do, means we always need to have a "plan B". We are not being mean by taking Sam to most everything with us, even if we know he will not be able to stay or attend the event. We are simply trying to help him experience all of life that he feels comfortable doing.

Until about 6 months ago, Sam hated indoor playgrounds like the McDonald's Playplace, or for us, our hometown Maple Maze as I wrote about in a previous post. If I would not have made him go once a week for the last year, to expose him, and to encourage him a step closer each time, we would never be able to see the smile and excitement that he now has for playing at them. And, for children with Autism, exactly what they need, the opportunity for casual interactions with peers. As my friend at Autism-schmatism has shared, you keep trying.

Our intentions were good. We still wanted to include Sam, as the one thing we are still determined to do, is be family. To do everything we can together, but just in a different way sometimes.
So we tried....
Plan A- We loaded up the car to go downtown before Christmas Eve. It was the last night of the Holidazzle Parade. We had not been to it for almost 4 years, and Sam had never gone. We thought we would make a night of it. We would first go to the Macy's display, where they have an animated holiday display every year on the 8th floor of the downtown Minneapolis Macy's store. As we trekked all the way up to the 8th floor, we soon found out the line was an hour and a half wait. Sam was already twirling and pulling away, wanting to run. Plan B is now implemented. We would go back down to skywalk level, eat supper at dad's favorite, Potbelly's, then go and find a good curb spot for the last night of the parade.

Should have known that things would need to switch to a Plan C while eating, or not eating in Sam's case. Lot's of people busy getting last minute gifts. Potbelly's is all glass, facing into the IDS Tower, the tallest building in Minneapolis and a center for activity, especially before the parade. Brent and Zach sat at a differnt table than us, as Sam was angry and had ran and head butted Zach in the back for no reason. Zach was hurt so bad he was crying. I took Sam to eat at a table where he could not see Zach, as poor Zach was his target, and Sam just wanted to kick and scream at him.

Sam was back to no words, just growling and screaming. He pushed away (onto the floor), each food I tried to give him. He finally ate two pretzals, and drank two sips of pop and done. Plan C started. I told Brent to have him and Zach to finish and then meet us on the plaza level, as I would walk with Sam and let him watch the water and people. We walked and walked.

Brent and Zach joined us. Sam seemed to be smiling and was excited about going out to the street to prepare for the parade. We made our way down a few blocks to finally find a curb spot. It wasn't too cold for a Minnesota evening. We thought we had settled in for our short wait. Sam continued to have a hard time staying still, and the crowds were starting to thicken along the route, making it even harder for the little guy. Plan D- Brent took Sam for a walk until it started.

As the parade got closer, Zach was full of excitement. He had started to remember a little what it was like. It is similar to the "Electro/Lights" parade at the Magic Kindgom. Every person and float is solid lights in the parade. As the parade got closer, Sam got more uncomfortable. After the first float, full of lights and music came by, Sam was done. The sounds, the lights, the thousands of people were too much for our little guy.

Plan E- I take Sam back through the skywalks to the parking garage until it was over. The walk back included two scenes of him just stopping and deciding to lay flat on his back. He is not screaming or tantruming when he does this, he just lays there and looks straight up. He does this every once in awhile when we are out. I have gotten so used to it, that I just kneel beside him and talk to him until he gives me that look like he is ready to go. To others it can look like he is having a tantrum or is hurt. It is always interesting to watch how people react. React, but not respond.

Plan F is for Brent and I. It is our plan, that even though these outings can be exhausting for us, and it doesn't always go as planned, that our final plan is that we will continue to keep Sam a part of our world, while respecting his.

We will continue
~ to do things as a family whenever possible
~to never be dissapointed with Sam, but maybe dissapointed with ourselves if the plan wasn't well thought out
~ helping Sam adjust to his world in little doses
~ to have a "plan B"

A Twist of Faith
Things in our life never go as planned. We have disappointments and celebrations. Often times these things occur when we least expect them. The one thing that is for sure, is that we can trust God to lay out His master plan for us, and that no matter how we journey down that path, He is always there, even during the "plan B's".

It was because the Lord loved you and kept the oath that he swore to your ancestors, that the Lord has brought you out with a mighty hand, and redeemed you from the house of slavery, from the hand of Pharaoh king of Egypt. Know therefore that the Lord your God is God, the faithful God who maintains covenant loyalty with those who love him and keep his commandments, to a thousand generations... ~Deuteronomy 7: 8-9 (NRSV)

Happy Hanukkwanzimas! (Journal#49)

2006-12-23T23:02:00.000-06:00

To all of my friends and family who celebrate this time of year in many ways, Happy Hanukkah, Kwanza and Merry Christmas! I owe the title of this blog to Mr. B, a retired teacher in the school I loved teaching in so much "Sandburg Middle School", who coined this phrase into an awesome song one year at a staff breakfast! He was the funniest, craziest teacher I've known, who loved the alternative education tweens that I taught, even though they were outcasts in the mainstream classroom. He was able to bring all people together with laughter, no matter their differences, religion, color of skin, attitude, ability, ethnicity, background, socio-economic status, etc..........

To all the Mr. B's out there that will embrace all children they teach, and who help people to accept one another...you will be the teacher's, that will make the world our children with Autism enter, an easier one. Thanks Mr. B!

A Twist of Faith

So we are all different, including our kids on the autism spectrum, but we all can be one in the spirit and working together to make this a better place for everyone during this meager time on earth. Everyone is a gift from God with a special gift to offer.

"There are different kinds of gifts, but the same Spirit.”

~1 Corinthians 12:4

More than impressed...(Journal #48)

2006-12-20T21:39:00.000-06:00

One of our greatest fears for Sam finally occured. As with many children with autism, the "fear factor" is minimal. Sam has always been fearless. That means street safety, heights safety, running safety, and the many other safety scenarios that don't exist in Sam's world. We have taught these things to him until we are blue in the face, we have used social stories, pictures, etc...

Our greatest fear has been that he would break a bone in the very near future (of which we have been surprised it didn't happen sooner), and our little guy did just that :(. Sam and his brother were so excited to see our visitors, that they were both literally running all over our wood floors. Let's just say that sleepers with feet + wood floors + running boys = disaster. Sam took the wipe out of his life.

One thing that I have learned in the Autism Bloggers ring, is that there are a lot of medical communities that are very unaware of how to work with children with autism...and to those friends, I truly do care and wish there were better doctor visits and opportunities.

However, Brent and I are more than impressed with our experiences in Minneapolis and the Twin Cities over the last two years with Sam. I have shared many times our love and trust for our pediatrician. And now, after Sam broke his "humorous/funny bone" (but it really wasn't funny) after hours, I have an even greater respect for our expanded medical community.

After Sam hurt himself, we weren't sure if we should go or not. As with many children with Autism, pain is part of their many sensory issues. For Sam, he doesn't respond to pain, rarely. So when he is crying continually, you know something is up. This he did. We loaded his little body into the van and decided to take him to Children's Hospital in Minneapolis. I have expressed in previous posts, that even while Sam is more verbal, he still can't always express his needs or hurts in detail. Often times, when he is hurt, he actually gets mad at that body part and will hit at it and hurt it more. So, when we arrived at the emergency room, I told triage right away that he was autistic. They were AWESOME! The wait was minimal, but they wanted to transition him as smoothly as possible. The doctor we had was great, compassionate and understanding of Sam's needs as well as hurts. The nurses and X-ray were incredible in the way they allowed Sam to transition from each event and to work with him. We are very grateful.

So, since they felt Sam's fracture was going to continue swelling, they did a partial cast, and the doctor referred us on to Gillette Children's in St. Paul, where we would see a pediatric ortho doc in the next couple days who would re-examine and recast his arm. We had that exprience today. I told the nurse ahead of time that Sam had autism. We found out later, that the doctor knew before our arrival as well, and changed the "usual" check in routine to make it easier for Sam. When arrived, the nurse couldn't figure out why they had cancelled him going to the height and weight check in (which takes place in a different hall and room), and why they had cancelled a visit with the doctor (which would take place in a different room), and why Sam was to be sent straight to the casting room where the doctor would see him there?

The nurse was very confused and said things had never been done this way before. However, she still took us to the casting room. When the doctor and his staff arrived, he was so gracious to explain that he wanted as few of transitions for Sam as possible to make the visit go easy for him, which is why he changed the "usual" check in procedure. Wow, I was impressed immediately. They put in a Nemo DVD right away, and his staff started interacting and entertaining Sam, so the doctor could explain everything again from the x-rays and the new cast that was being put on. I was more than impressed.

A Twist of Faith

Sam is doing great. He even went to see Santa for the first time in his life today before getting his new, bright green cast put on. Brent and I were more than impressed with Sam and his response to this whole situation. We are so proud. He did great!!!! So, I spoiled him today. He got a couple things he wanted, even with Christmas in sight. Oh well!!!! He has been freaked out by Santa the past 4 years, so we have never pushed it. We don't make a huge deal in our house about the Santa thing anyway, as it is a part of the Christmas Celebration for us, but it isn't THE Christmas celebration for us. But still, Sam surprised us in wanting to sit on this stranger's (from who knows where) lap. Sam continues to impress and amaze us each day. However, this is nothing compared to the impression God has had on our lives through this journey with autism.

Joshua told the people, "Consecrate yourselves, for tomorrow the LORD will do amazing things among you." ~Joshua 3:5

It's Official, or is it?

2006-12-19T16:32:00.000-06:00

President Bush officially signed the Combating Autism Act today. Just wonder if there will really be the dollars to back this bill? We'll see................

Here's some of the coverage when it passed house and senate earlier this month:

ABC's coverage

We'll see what kind of coverage it gets tonight after the President signed it.

Just hoping for some good research to deal with insurance companies!

A New Place (Journal #46)

2006-12-12T12:22:00.000-06:00

He found a new place, and I wonder if it will stick.

Living with a child with Autism finds a family learning to adjust to (and many times prevent) routines. Routines are not bad for children with Autism, as it really is a means to keep their world stable and predictable which is important for them. Here is a piece written on an Autism Association site from Austrailia that explains it:

People with autism often insist on following routines or rituals, and can be distressed over changes to small details of the environment, such as wanting to keep to the same route to the shops or eat dinner from the same plate. They may strongly resist attempts to redirect them from these behaviours or to change their routines. It is thought that people with autism feel tremendous anxiety at the unpredictability of daily life, and these rituals and routines remove some of the uncertainty for them about what will happen next.

Routines can only be a challenge when they effect the whole family, which can be frequently, so I have learned to pick those battles and let the other times fall to the side, both for Sam's sake and ours.

So, yes, he found a new place.

Sam has a rigid lunch routine on school days, as I have said before. Coat off, up steps, sit at table with plate of pancakes already prepared (thank goodness for Pillsbury Whole Grain), eat, wash face and hands, done! Of course this routine started by me having his lunch ready one day a year ago, and then it has to be the same. Yes, at lunch, I have given up on variety...pancakes every day is his need or look out. We take advantage of him knowing that supper is the time the food changes.

Yesterday, I broke the routine and now am going to pay for it. It was a rainy, drizzly day. I was trying to finish Christmas cards and had a place set up in the basement on the couch. I thought it would be fun to have Sam eat lunch on a TV tray down there with me by the fireplace, and then thought we could snuggle and take a little nap together before heading out to speech therapy. Well, the plan worked great. He loved being downstairs with mom and eating on the TV tray. We have also made it clear to the boys in the past, that we only eat on the TV trays for special times. So, I told Sam that it was a special time.

Today...lunch time. Ooooooops! I knew it might come back to haunt me and did it ever. I made lunch for Sam and I (no, I do not do daily doses of pancakes, just the lad) and placed it on the table. He did not have school today, so normally the lunch routine is really only eating pancakes. He would have no such thing as eating at the table with mom. He was going to eat downstairs with a TV tray. A huge tantrum that included kicking me and throwing things ensued. I had time today to deal with the tantrum for however long it took, as we didn't have therapy today. I really felt like I had to fight this one, otherwise, he will eat down there for every meal, knowing how he sticks to routines once introduced or changed. After I got him calmed down, I let him lay on a kitchen rug, which is what he likes to do when he needs to calm down. I turned around to finish preparing my lunch (his was already on the table). When turning back around, I saw it was gone, and so was he. I thought, rrrrggggggggg, he went downstairs. He did not. He went to the couch in the next room (which is normally a big no, no) and was actually laying on his side with his head down on the couch eating. I walked in the room to tell him to sit up so he wouldn't choke, but of course did not need to, as he growled at my presence and sat up, as if to bark me away. I smiled, and I think he kind of wanted to smile back, but didn't. I decided it wasn't a battle worth diving into today. We have a busy night planned running brother around to piano and youth group, so I decided that his routines were going to be broken enough today. Let it rest.

My only concern about this lunch routine...is this a new place to eat?

A Twist of Faith

I am a proud member of the Disciples of Christ. We practice communion every Sunday welcoming everyone to Christ's table. Some people say, "Doesn't communion become routine and lose meaning when you do it every Sunday?" I always respond with no. I can hardly wait for the chance. It may look like the same communion table each week, but it is always a different reason and a new chance for forgiveness and newness. It is always a new place to eat.

While they were eating, Jesus took a loaf of bread, and after blessing it he broke it, gave it to the disciples, and said, “Take, eat; this is my body.” Then he took a cup, and after giving thanks he gave it to them, saying, “Drink from it, all of you; for this is my blood of the covenant, which is poured out for many for the forgiveness of sins. I tell you, I will never again drink of this fruit of the vine until that day when I drink it new with you in my Father’s kingdom.” ~ Matthew 26: 17-30

Combating Autism Act

2006-12-06T13:45:00.000-06:00

The Combating Autism Act finally passed today in the House.

The Autism Society of America sent this brief summary of the Act to its members in an e-mail today:

S. 843, authored by Sens. Santorum and Dodd, first passed in the Senate on August 3, 2006. The legislation contains many important provisions to strengthen autism research and diagnostics, including a renewed investment to track the incidence and prevalence of autism spectrum disorder; to increase public awareness of early identification; promote the use of evidence-based interventions for those at higher risk for autism; and establish state-level clearinghouses for information on autism. For the first time, this legislation also calls for culturally competent information on autism.

There has been lots of discussion in the autism community about this act, especially since it uses the word combating. It makes it sound like our children are so horrible with it and we must defeat it. I too am offended by the word "combating" in the Act, but I am not offended about what the Act may mean down the road. I did spend time this summer and fall contacting my senators to encourage support of it. It might help families "combat" insurance companies!

I post this today, after two long, frustrating days with our insurance. Rrrrggggggggg! We have been dealing with coverage for Sam since the get go. I am beyond frustrated with them and will vent here (sorry)!!!!! I can't really go into much detail, other than say they will cover some things and then they don't. They (our insurance) say they view autism as not having proof or evidence of therapies that will help as there is no cure. They also say that ABA therapy has some research in support of but not enough science based proof of helping. We feel stuck sometimes with few options for Sam, and stuck with lots of bills (but all worth it for him)

...but my point is this. In all of the conversations I have had with insurance over the last couple years, it is very evident that they don't want to cover anything that is not evidence based. Maybe with the new Act, there will be dollars to back up such research.

My experience in the state of Minnesota has been that families in the middle get stuck when it comes to services for Autism. If you are very wealthy, you can afford the extra services from PCA's to ABA, or if you have a lower income and can qualify for Medical assistance, they cover everything, but if you are middle income, you can't even afford TEFRA (at least not here).

I just want families with children with Autism to have a better means of accessing services. My hope and prayer is that this Act will increase awareness and research and services. And no, I don't want to combat Autism, I want to combat the insurance companies. So, forgive the name of the Act, but hope for better resources for our children from this.

A Twist of Faith

1 Timothy 6:12 says,
"Fight the good fight for the true faith." (NIV)

Perhaps we can look at this Act not as "combating Autism", but fighting the good fight that will serve the highest good for all families with Autism.

He knows... (Journal #44)

2006-12-03T21:14:00.000-06:00

Sam knows. He knows he has Autism. He doesn't understand it, but he knows.

We, as a family, have always used the word, Autism, around him. A lot of times, we may have been talking to his brother about something in reference to it, not always thinking that Sam would pick up on it. There has also been a few times that brother has said, "I know, it's the autism", when he is frustrated with his little brother and trying to justify his actions.

Zach went through a whole year of Sibshops. Sibshops are classes for siblings of someone with autism offered through ARC. It was a wonderful experience for Zach, as he learned there are other kids out there who have special brothers like his. The classes teach the siblings about autism, respecting different abilities, about how to express themselves when they may be frustrated with their sibling, and how to be an advocate for their sibling. It is through these classes that Zach became more versed on autism and is never afraid to tell friends or others about it and his brother.

Because of our free speech with it (autism) around the home, and Zach's understanding of autism, we believe Sam is picking up on it. I really had no idea how much...until last night, when Brent came out of his room after reading time...

...Brent has been reading Charlotte's Web to Sam in anticipation of seeing it when it opens this month. Reading to Sam has become a blessing. It hasn't been until this past year that we could get him to sit long enough to read anything. He would get focussed on an object on a page, or a line, and could never get back to the meaning or understanding of the story, he would start flapping and jumping up and down on his bed. Of course these reading attempts were made with developmentally appropriate books, which up until recently had still been board books. But...his brother has been trying to read with him more and Sam has become interested in all of this reading Zach does alone as well. After much trial over the last 3 years, he will sit and listen to a story. Not only a story, but now Brent is reading a chapter book! Brent had gotten to the part where Charlotte was telling Wilbur how special he is. Special because he is the little one in the batch, or kindly put, the runt.

When Brent got to this part of the book, Sam started to say to Brent:
"ooooooohhhhhhh, so Wilber is spesil lite (special like) me?"
"Yes, Wilbur is special and Sam is special" Brent said.
Sam replied, "Does Wilbur have awstisism (autism) too?"
The conversation continued on a little more.

Brent came out of his room and quietly closed the door after Sam had fallen asleep listening to the story. I was completely surprised when Brent told me. I had no idea that he even knew the word. Brent told me that Sam has said that he has autism on a couple other occasions to him. And Brent had even gone so far as to probe Sam to find out that he knew it had to do with his brain. I was floored.

Why wouldn't Sam know that he has autism...as I think back? How many times have I told a complete stranger, "sorry, he has autism"? All those times waiting in a checkout line when he can't stand in line, and he is screaming, and he doesn't even know why sometimes. His tall skinny, almost 5 year old body looks too big for these types of tantrums to others.

Or the times that he is hitting me in public because I can't understand what he is trying to say. I very well know he is not hitting me because he is mad at me, he is so frustrated. Hence, the scene looks worse than it really is as I am calming him, and again, I say to a stranger staring, "please excuse him, he has autism and is trying to tell me something."

Of course Sam has heard us say it, duh! Even though I thought he had no idea...he knows.

A Twist of Faith
God surprises us like Sam did me. I had no idea that Sam knew the word autism, or that we even associated it with him. Sometimes we think no one else knows anything about us or really understands, but God always knows our needs and all about us. Sometimes we just need to talk to him to find out. It's really simple with Him, because...He knows...

"And when you are praying, do not use meaningless repetition as the Gentiles do, for they suppose that they will be heard for their many words. So do not be like them; for your Father knows what you need before you ask Him. "
~Matthew 6:7-8

The Autism Story, as told through the movie "Happy Feet" (Journal #43)

2006-11-25T00:56:00.000-06:00

"Remember son, the word triumph starts with "try" and ends with..."umph"

~ Memphis (Mumble's dad) in Happy Feet

Twas the night before Thanksgiving and all through the house,
mama Cottington had a meeting , and the boys were not quiet as a mouse.

So off to the theatre dad took them so quick,
to see a new movie, the Happy Feet flick...

...so Brent took Zach and Sam to see Happy Feet, the adorable movie about a penguin named Mumble, starring the voices of Robin Williams and Elijah Wood, on Thanksgiving eve before we had a late night departure for grandma and grandpa's in Iowa. They loved it, and I was incredibly bumbed I couldn't go with them, as we love doing those movies as a family. When Brent got home, he told me I would have loved it, that it had lots of meaning behind it related to someone I know, but he did not elaborate. We then left for our trip to Iowa.

On Thanksgiving night, with all of our nieces and nephews, children, siblings and grandma and grandpa, off to the theatre we all went again. The movie of choice would be Happy Feet again, and of course the boys did not think twice about another viewing of it.

When we had gotten our popcorn and finally sat down ready, Brent looked at me and said that he wanted me to tell him who this movie reminded me of after viewing. He also told me that it would make me cry, especially after I figured the meaning out. Boy did I, and did I really appreciate Brent's synopsis and correlation of Happy Feet to autism. So here is how the movie goes with a direct correlation to Sam and autism.

Mumble, an adorable little penguin is born a little differently than all the other penquins. He comes out physically looking different than all the other penguins as well, when he hatches out of his little egg with all eyes on him. It is very obvious from the beginning that there is something different about Mumble.

The one thing that is the same, or "neurotypical" to penguins, is that they all have a heart song to attract them to their soul mate. It is made evident in the movie that all penguins must have this special ability to sing, or they can never truly belong. Mumble is so happy and content with who he is, not even realizing that it is a problem. He tries so hard to communicate to others that he has a song, but they don't understand him, because he doesn't sing his heart song like everyone else. His song is in his feet. He communicates differently. He taps his feet. He dances. He is happy with the way he does it. Mumble doesn't realize it is a problem until they separate him from group. Like a child with Autism. They try so hard to communicate. Even if they have words, are verbal, as with Mumble, the way they express their words and language still make it difficult for others to understand. While Sam is verbal, we have difficult times understanding what he means throughout the day. He has a hard time communicating to us what he wants, which is a huge basis of his melt downs. He can use his words, but he can't tell me when he is sick. It can be hard sometimes. What the movie makes clear though, is that it is not hard for the child to understand themselves. Mumble is so happy and ready to venture through life. I never doubt that Sam doesn't know what he wants. It is just the way that we understand each other. Now that people can understand Sam more and more, he still repeats so much of what he hears around him and from t.v. He understands when to use certain phrases, but he will expect the same response from you that he heard from "the other situation, show, or conversation he first heard it from." If you don't respond the way he expects, then severe frustration sets in. Mumble didn't understand why singing was so important. He didn't think he needed it. But the other penguins knew he would need his heart song to find a mate later in life.

The movie continues with Mumble's parents, Mempis (Hugh Jackman) and Norma Jean (Nicole Kidman) wanting to fix him. They take him to the most professional pengiun singing teacher in Antartica. Reminds me of the whole "cure Autism", gotta fix it now epidemic. In the movie, Mumble doesn't need fixed. He knows his heart song is dancing. It is others that can't accept him. You can even see the disapointment in his parents eyes. Mumble continues to happily go along, not seeing that anything needs fixed. He is a good sport and tries singing lessons, but to no avail, even the "professional" is done. The discussions/debates in the Autism community about cure, always come back to those of us with comments like, "you have him in speech and OT, you have tried diets, you have him on meds, isn't that wanting to fix or cure?".

No. It is helping him along lifes way. Helping him in areas of his life that can be challenging. Everyone (autistic or not) needs a good nights sleep, so Clonidine has helped him get that, and even helped him focus at school better. Neurotypical people use sleep aides who aren't seeking a cure for anything. We don't want Sam cured, we love him the way he is. To me, helping Sam communicate, learn how to use silverware, or how to use his words is simply helping him through this journey called life.

As Mumble grows older, he is unable to graduate with his fellow penguins and is the very last to lose his adolescent feathers. The gap in his development is very evident by now. Somehow, Mumble never lets this get him down and he is determined to do things the same as his peers. As parents of children with Autism, we see the gap between the things our children can do compared to their peers. While Sam is just approaching Kindergarten, it is becoming more and more evident just how far behind he is. We are staying focussed on the things he can do and celebrating the new things he learns along the way.

In Happy Feet, the fish population is decreasing for some reason, causing starvation among the penguins. The entire Penguin Nation blames Mumbles odd dance for disturbing the natural order. Mumble then sets out to prove them wrong. He discovers that humans are at fault in the chain of life. Through his "heart song", his dancing, he wins over the hearts of humans when captured and placed in a zoo display. His dancing reminds people about how adorable and imporatant these creatures are. Hence, the environmentalists come to the rescue, and thanks to Mumbles soul reaching out, the fish increase with abundance.

Perhaps, if we just accept and love our little ones with autism, knowing there is a beautiful heart song that they each sing, then life will be easier for them and their families. Maybe Sam won't marry like Mumble finally does, when he connects with his soul mate who uses his foot beat for her song, but Sam will be able to share his heart song with us forever. Autism is all about acceptance, awareness, and the human spirit.

A Twist of Faith

The three A's:

Awareness of others~ Jesus made evident through His parables and stories the importance of understanding others, from the women at the well to the hunger of 5,000. Awareness of others needs helps us to understand others.

Acceptance of others~ Jesus accepted everyone no matter what. He healed and touched lives of those whom others could care less.

Awareness and Acceptance of Autism, a must.

One of the teachers of the law came and heard them debating. Noticing that Jesus had given them a good answer, he asked him, "Of all the commandments, which is the most important?" "The most important one," answered Jesus, "is this: 'Hear, O Israel, the Lord our God, the Lord is one. Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.' The second is this: 'Love your neighbor as yourself.' There is no commandment greater than these." (NIV, Mark 12:28-31).

Next week in Newsweek (Journal #42)

2006-11-21T20:44:00.000-06:00

The November 27th issue of Newsweek will have a cover feature on "Growing up with Autism". Again sparking my interest in seeing into the future with Sam. Oh how I wish I could just even fast forward to next year in kindergarten to see how he does! Please check out a review at Autism Vox by my friend Kristina. Just an FYI.

I wish everyone a Happy Thanksgiving!

In a Matter of Seconds (Journal #41)

2006-11-12T20:18:00.000-06:00

It happened so quickly, and always does. In a matter of seconds, Sam can change the layout of any room. I don't say it out of frustration (although at times it is), I say it out of amazement. Tonight we returned from delivering Zach's wreaths to people who ordered them through his Cub Scouts, to find a message from grandma on the machine.

Sam had started playing with some of Zach's flash cards, just one pack of some math problems at the time. He was having fun looking at the numbers and was sitting at my feet when I called Brent's mom back. Sam was calm, not making noises, playing at my feet.

One of Sam's stim's (as our family calls them) or stimming activities (check out my blog friend Kristina's "friendly" wording and writing about it) is constant motion/movement/lining up of objects. Sam has to keep moving and organizing at all times. The only time he really sits still is when he is really hungry, or watching his latest TV fav which is Mickey Mouse Clubhouse right now. It is a matter of seconds how quickly he can take over a room with his organizing or lining up.

Hence, the few seconds at my feet with a deck of cards, turned our living room into a quilted array of flashcards. I no longer had walked into the kitchen while on the phone, to only get some water, to find this when I returned. Cards lined and organized all over the floor. He was arranging everything meticulously. Chicago, our dog, made the mistake of journeying through the maze and accidently shuffled some cards. Sam had several shrieks and yells to share with her over that little episode. While everything looked just thrown about. He was very carefully placing each card in a specific place, and knew when one was turned slightly wrong in his eyes.

In a matter of seconds things can change. Can change for the better. The past couple/three years would have found us dealing with anguish and screams at the thought of cleaning them up. He would not let us touch his arrangements for days on end, nor would he. They were his "shrines in a glass box" as we called them. But we could never think of cleaning them up. But tonight was different. After allowing Sam to walk around the outside of them several times, to lay on the floor to get a floor view of them, and after he sat beside them for 20 minutes just looking at them. I gently told him that we would clean them up together before bed. He didn't scream yell, or anything. I went into the office, came back out seconds (really a couple minutes) later, and he had sorted all 5 decks accordingly into 5 piles and wanted help to put them back in the boxes!!!! All in a matter of seconds. That's my boy:)

A Twist of Faith...

In a matter of seconds life can change. In a matter of seconds this past week, we had a high school classmate, and a friends brother-in-law die in seperate car accidents. Both young, both had children, one had a baby on the way. Life is a gift from God. What we do with it and how we live it can be taken in seconds. It frustrates me greatly how it always takes times like this to remind people about not waisting the time God gave us. How important our time is here on earth. Why can't people just be focussed all the time on what God wants us to do, and not wait for these dreaded moments to be reminded. We get caught up in our own wants, needs, sadness, desires, dissapointments so much that we forget that this life is not about us. It is about what we do for others, how we help others, how we reach out to others before it's too late, that makes all the difference in this life. Reaching out to help and do for others can change a persons life...in a matter of seconds.

It is God himself who has made us what we are and given us new lives from Christ Jesus; and long ages ago he planned that we should spend these lives in helping others. ~ Ephesians 2:10

Oh Dear! (Journal #40)

2006-11-07T14:41:00.000-06:00

I have decided, as a way to reframe some of the challenges that go along with raising a child with Autism, to put our experiences into a frame of faith. That with each "praise or concern" that occur on this journey, that we take a look at it as it relates to the cross in our family life.

So, without further ado, I share with you my first attempt...

...we were driving to Sam's speech therapy session, when the funniest part of my day occured. I was driving in the parking lot of the medical center where he goes. Sam was buckled in the backseat of course. I stopped for a moment to wait for a lady to cross the street to the building. She stood for a moment, and then I gestured to her with my hand for her to cross. But as with any typical "Laura moment", I can never just do something in silence, I also have to speak. So, with all of our windows rolled up tight, I said to the lady as I motioned, "Go ahead dear". Expecting that she would hear me, NOT! But big ears in the backseat did.

Sam immediately yelled at me, "Mom! Dat's not nice!"

"Sam, what's not nice?"

"You tan't tall her dat!" he said with major attitude.

"Sam, call her what?"

"Not deer!" He yelled.

"Who's not dear?" I said.

"You talled her deer."

I finally went, "duh" to myself, realizing that he thought I called the girl a deer, when I said, go ahead dear. I started to smirk. Wanting to push him a little to see if that was for sure.

"Yes Sam, I said to her...go ahead dear, so she would cross the street" intentionally not focussing on the dear portion to see what would come next.

"Mom...you talled her a name, no names, mean mom. See not a deer!" I am so chuckling to myself! I love him so much. I am immediately taken back to one of the first times Brent and I met with our pediatrician, Dr. Kuperman, shortly after Sam was diagnosed. He reminded us that we need to speak without sarcasm, and to say exactly what we mean, without extra words and such. That children with autism interpret things very literally. This was one of those times that I love the "literallnes" (if such a word) of it all. It is so darn cute. Okay, back to my boy....

so I say, "Sam, some people say dear, meaning they like them, like a friend. So it was like I said go ahead friend, cross the street. Or sometimes people say oh dear, like oh my goodness. I didn't say it to be mean."

I looked at his face in the rearview mirror. He was super serious. His eyebrows straight across as he stared out the window. There was a lengthy period of silence. Then he said with one final request. "Don't tall her deer no more, not nice. Miss Telly said no names." Miss Kelly, his special education teacher. Sam is in a LEAP program that is highly focussed in social skills training. Every week they focus on new skills and practice them while playing. Being a kind friend is a focus this month, and according to Sam, I need some practice! Oh Dear!

A Twist of Faith...
In the way Sam views things so simply and literally, makes me almost jealous sometimes. We as humans, can add such complexity to life by analyzing, rethinking, trying to interpret, instead of just seeing things and enjoying them for the way they are. To fill blessed for the simple things in life, for simple understanding, for simple but serious faith. Thank you God for the way you lead Sam in teaching our family. Life is too short to make it complicated.
Take your everyday, ordinary life- your sleeping, eating, going to work, and walking around life- and place it before God as an offering. ~Romans 12:1

I don't care what the world thinks...because I have a proposal I'll never forget! (Journal #39)

2006-10-31T14:38:00.000-06:00

I don't care what the world thinks...especially on an outing like today. I had a lot of errands to do when Sam got off the bus today. So, I thought we would try going out to lunch together first to set the pace. We went to Culver's (he loves their hot dogs). He was awesome! After ordering he asked me, "I pit?" (pick the table we would sit at). I told him yes, and his eyes were all excited. He walked a little dance around the dining area (which was getting very full as we were there at noon). He put his little finger his cheek, as if to say "hmmmmmm" like his brother does, and then he found a table. I then asked him if he wanted his own ketchup, because he likes to dip his fries in the little cups they provide. He politely said, "no tants". So, I went about my business putting napkins and such on the table, then awhile later, out of the blue he said, "I tare withhhhh (we're working on "th" in speech therapy) mom" (he wanted to share my ketchup). I was more than happy to share.

Next stop, the Scout Shop, to get badges for our Cub Scout den I lead (yes, I am a den mom, never would have thunk it, but is a way of supporting Sam's big brother). Something happened on the freeway on our way there. I do not know what, but watching Sam's face in the mirror while I was driving, was telling me something, I just didn't know what. Every time I would look at him in the mirror, he would scream, "ahhhhhhhhh". His eyebrows were very tight. I asked him to use his words to tell me what was wrong, or what he needs. Another "ahhhhhh"! I was afraid to take him into the district scout office, as it is always a very rigid, "this is the way you do it type of place". I HAD to get the badges though, because our pack meeting was tonight. It is a big night for each den, as they get their adavancements and badges once a month in front of almost 80 scouts and parents. It is a big deal. .....................I gently unbuckled Sam when we got there, like not wanting to tip a basket of eggs. There was a little "grrrrrrr" under his breath. He just sat in his seat, not getting out. I told him to come with mom. Finally it looked like I might get some words! "Too bite. Turn it off" (he was talking about the sun). I showed him how to cover his eyes like we always do to walk in. His face straightened back to a firm look and in we went. He did not say one word the whole time there. It took awhile, as I had to fill out papers on the boys getting the badges, and then get them, and so on. The whole time he just laid flat on the floor by me at the counter. People kept staring at me, like to get him up. But...he wasn't in anybody's way, he was making no sounds, just staring at the ceiling. But...two more people behind the counter had to say, "wow, he must be having a day, wish I could just lay down whenever I wanted" (and then rolled their eyes). Yah, well you know what scout master behind the counter...he happens to love lying on the floor, he does it a lot, he likes the firmness and pressure of the floor, it makes him feel stable, oh yah, and did I tell you he has autism, and that you should just be thankful he isn't running all over this store touching everything, knocking it on the floor and screaming at your customers. (Okay...I didn't say that, but I wanted to.) Outa there! I DON'T CARE WHAT THE WORLD THINKS of our beautiful boy.

And yes, oh my goodness, I had to get one more stop in before we went to speech therapy. Brent is leaving out of town again, and needed his new pants he got a week ago that were getting altered, picked up from Macy's at our mall. Every time we walk into that store (which used to be Marshall Fields, which used to be Dayton's all just in the last 5 year), it is sensory overload for Sam. I was trying to prepare him and myself for it all the way there. But NO..................as soon as we walk in the doors, it hits..........what?..............I don't really know, other than I think it is a combination of the lighting and the mens fragerance counter to name a couple of things. Sam had an instant "drop to the floor, screaming" explosion. I had to get Brent's pants and go. Eyes were glaring at me all the way down each isle, like they were asking me what I was doing keeping him here. But...I had to get Brents pants before he leaves....and this mall is not a quick drive from our house, to try and return, before he goes. I DON'T CARE WHAT THE WORLD THINKS of our beautiful boy.

We get in the car, he starts to calm himself, as he wouldn't let me near him. We try to talk to grandma, and then it is off to speech. While he participated well during his session today, he was straight out the door when we were done, yelling in the reception area as I talked to our therapist, "doooooo, dooooooooo" (go, go).

As the afternoon progressed, and Sam had found other spots around the home to lay on the hard floor in a ball (a way he comforts himself), he started to come back out of his shell. I let him "chill" on the rug he chose by the garage door, and went up to the office to work on the computer. It was there in that chair, that I received the best proposal of my life. Sam had found some flowers in a vase. He brought them up to where I was working, and with the biggest smile, while he stood in front of me holding a few flowers, he said, "marry?". Ohhhhhhhh, THE BEST PROPOSAL IN THE WORLD!!!!! I DO, SAM!!!! I promise to be your loving mom the rest of your life!!!!!!

Wondering why...(Journal #38)

2006-10-27T23:45:00.000-05:00

Wondering why...I haven't been able to put to words what I have been pondering about Sam the last few weeks? Could it be because we have seen dramatic highs and challenges ( I don't want to say lows, okay, I just did didn't I?)? The highs have been awesome. His big brother had a sleep over, consisting of 8 very active 9 year olds on his brother's birthday. I was completely stressed about Sam being overstimulated by having all of the excitement. Brent was on "Sam duty" throughout the event. On the agenda for the evening was bowling at the awesome Brunswick Zone. Our last experience trying to do a family bowling night ended up with Sam screaming, running around and hiding under chairs, of which saw the two of us driving around in the van for the next hour while Zach and Brent enjoyed the rest of their game. Needless to say, to our surprise, Sam was the most manageable boy there! He was awesome, even with all the noise, even with the 48 lanes, lazer tag center, arcade, diner, and sports screens! It truly was a tearful, joyful time for Brent and I to witness. Perhaps, the greatest though, was the way Zach and his friends handled Sam. Even though we heard some of the boys saying things like "I don't understand anything Zach's brother says" or "Why does he make sounds like that?", the culminating moment was at the alley. The boys shared two lanes. Five on one lane and four on the other. Sam was a part of one of those. Every time it was Sam's turn, all the boys in his lane would get his bowling ramp, help line it up for him, help carry his ball, then they would all stand beside him to encourage him. They would cheer him and high five him no matter what he did! Sam was loving life, smiles were huge, the high was unreal!

Wondering why...Sam's back to lining all of his toys up. Felt like we had made progress seeing more interaction and play with them instead of his "arranging and lining up" and then walking away allowing no one to come near or touch. Or had we made progress, or was it just that we are hardly ever inside from June-Sept before we have to be in winter? I started really thinking about his play. Yes, we haven't really been playing inside for a long time. We've been out back in the sandbox, where Sam will play for hours if left to do so. So I got a little sad this week, when he kept creating the same scenario with his barn stuff. If I cleaned it up at night, he would wake up screaming that "you brote, you brote it!" He would then proceed to line it up exactly as it was the entire day before. No one can touch it all day! What I thought was progress wasn't. Or do we really need progress in this area? I agree that he has got to allow us to interact with him when I am tyring to lay on the floor and play, I agree that he has to learn to let people play with the toys the way we want to, not on his terms, but isn't it still okay for him to do his arranging/lining up for whatever security reason he needs? Lining up organizes his world. We have taken all toys out of his bedroom this last year, because he would just line everything along the walls of his room all night if we didn't. Even after they are lined up, he still keeps adjusting them, making the objects face directly the same way or whatever. All that remains in his room are a couple of his favorite snuggly animals, his tub of "sensory" kidney beans ($100 worth), and his weighted blanket. So, this week I caved. I allowed him to bring in a few toys at bedtime to line up along the wall. It seemed to comfort him. I put the timer on telling him how long he had, and you know what he said back to me? "I dus need to line dem mommy, den done." (I just need to line them up mommy, then I am done)! I wonder if it is okay, but I don't need to wonder if it makes him feel better, it does!

Just a couple of things I have been wondering about....of which there was so much even more I am still wondering about, and will share in later posts.

Just always thinking, I am...and wondering why?

Sometimes we dance (Journal #37)

2006-10-04T21:29:00.000-05:00

Sam's been kind of quiet lately. Only speaking when he really needs to. When he goes through stages like this, I am intrigued by his face and the way it can speak with expression. He will look at things with great thought, as if seeking clarification from whatever he is looking at. I particularly enjoy the way he interacts with his environment during his "silent times". He appears to examine objects more. He will feel them, smell them, and of course lick them sometimes, but I love when he lays down to get eye level with whatever he is looking at. He will take his hands and raise them to the height of the object. He will lift it, hold it, caress it at times. Sometimes it is like he is dancing.

When Sam got home from school today, I am sure he was ready for his usual routine. In door, shoes off, coat off, book bag down, run up steps, eat. I was not ready for that today. Today I needed to enjoy him in the now. I needed time with him away from our current surroundings. A place where there was not his familiar comfy's to distract him, but a place where we would be distracted by comfort. That place today was Medicine Lake. I wanted a place we could relax by the water or play in the sand, or crunch the beautiful fall leaves. It was a perfect fall day.

I love Medicine Lake. It is a bit of a drive from our home (10 minutes, but we live in Minnesota, so that is far considering there are over 10,000 lakes and we even live across the street from one). This particular lake has every element I love. It has parks, homes, wetlands, nature, Minneapolis skyline, biking, beaches, and lots of nature. This lake became my friend when we first moved to Minneapolis 6 years ago. I drove by it everyday to my teaching job. Some days I would drive by missing our first home in Des Moines, but somehow this lake would bring me peace. When my sister died 3 years ago, I used to go there to walk and reflect. It just always brings me peace. I needed peace and quiet with Sam today. I knew the lake bike trails and parks would not be busy, as it was a school and work day, and at the time we were there, 60,000 Twins fans were at the Metrodome watching them lose in the 2nd playoff game or were at local establishments watching the game. Few would be walking around the lake. It was a peaceful, beautiful day to be at Medicine Lake.

Before we left for the lake, I had to make sure it would be a smooth "out of routine" transition. I knew that I only had to tell Sam that we were going to "his" lake to watch the ducks and eat a picinic, and he would be excited. Sam also loves this lake. Whenever we drive by this same spot, Sam always says "tretty mom, tretty" (pretty mom, pretty). He knows exactly the spot, exactly the bench that he likes. We get to know this lake whenever we are doing his "Listening Program", as we do it while going for rides in the van in the evening.

I looked at him and simply said, "Lunch at your lake?"

He screamed, flapped his hands and started spinning with joy. He was putty in my hands. While I told him to go potty so we could go, I quickly checked his bag to see his note from his teacher today. She wrote that Sam was very quiet, seemed lost, and needed lots of directions and reminders of what to do today. This was no surprise. He has been needing reminders about who people and family members were lately, and how to do everyday things he has mastered before. He has been forgetting who people are, what their names are, and has been talking through us to them. He is particularly close to our pastor, but has been telling me what to say to her and has forgotten that he ALWAYS calls her "pattor eelynn" (Pastor EvaLyn). This past weekend he couldn't remember the names of his little cousins who are a couple years younger than him, so he called them "ditto ones" (little ones) all weekend.

He returned up the steps ready to go on our drive to the lake. He was still flapping his hands, flying around and around. It was almost like he was dancing.

Into the van. Quiet ride. I kept watching him in the mirror. A soft expression was on his face. He too was beginning to feel the peace the closer we got. I could tell.

When we got to the park on the east side, we found a spot near a playground to eat our lunch. We ate quietly. I would try to talk about school, but every time I would ask him who he played with, what he did, etc...he replied each time with "not tell today". When he says this, he really means it. I have tried to push in the past, but it can easily escalate to screaming. But....of course I had to try one more time. No screaming in response, but this time a combination of sentences...."I fordot, not tell today". He was calm and peaceful when he said it, but clearly expressed with his face to me, that he wanted to sit and watch the water, eat his lunch, and for there to be silence.

Silence it was. But it was an incredibly peaceful silence. A couple times I would try to talk...do some "WH questions" (which always gets him talking)...but to no avail, would anything work today. Silence. I believe God wanted me to shut up and enjoy the silence with Sam today. Why can't I ever listen?

The rest of our time at the lake was in quiet. Sam would get up to go explore the beach area. I followed. He watched me out of the corner of his eye. Occassionally testing how far away he could get from me and how close to the water he could go. I just followed along, walking like him sometimes, walking with sometimes. Sometimes...it was like a dance.

One of us would move towards the bike trails along the lake, the other would follow. Sometimes we would stop to pick up a feather, a leaf, a rock. Still no words. Sometimes we would stop and just stare at the water. Just stare at the geese, ducks, and birds. We both knew when to move on, when to stop, and when to honor our silence.

This was a beautiful day. A day of silence. A day of peace. It wasn't like a dance....we were dancing. We didn't touch, we weren't holding each other, we weren't stepping on each others toes, but we were dancing. Dancing all through the lunch hour into the afternoon. I can't wait to dance again with My Sam I Am.

From "Tomborns" to Sit and Spin (Journal#36)

2006-09-21T23:33:00.000-05:00

Sometimes I wish I could go back to our summer vacation. It was such a dream this year. Mostly, as I said before, it was uncharted territory for our master mind Sam who remembers everywhere we go, and is the navigator supreme. He did not know anywhere we would go on our vacation until we experienced it. So, as the last official day of summer is here (and we woke up to 30 degree temptures here in Minneapolis), I relfect, I am sad, and I can't wait until next summer.

Above is an attempt at my first "sample" digital scrapbook page. I am going to digitally scrapbook our Yellowstone experience tonight with my "scrapbook girls". This is exciting for me. I am an "in the closet computer geek". I have been scrapbooking for 10 years, and am so excited about taking it to the next level. I hope to share more pages as I practice more.

Even though I am sad about summer, I also LOVE the fall. The crisp morning air (especially in Minnesota), the beautiful lakes and leaves, the apple orchards, the pumpkin patch, and our now annual trip to the north shore of Lake Superior (I will scrap those pages and share when it happens :).

As even more sick than this may sound. I also love mowing in the fall. I prefer to mow in our family by choice. I love our yard and being outside (as does Sam). I also mow by choice because Brent works hard, travels, and when he is home, I want him to be with family, not doing yard work.

This all leads me to the newest love of my life. It is a new love, as I murdered its former. I killed our Lawn Boy. Brent and I were so proud of our purchase almost 13 years ago. It was expensive for us, a new brand named lawn mower. But we researched and purchased Consumer Reports, and made the Lawn Boy decision. We knew it would last forever. That is.......until I rendered its brutal ending last week. Seems ding dong me, forgot to put oil in the gas the last time I filled our 5 gallon gas can up. Yup....I also polluted the enviroment in our neighborhood that fateful day, as loud cranking noises emerged and clouds of smoke pummeled into the air. Several neighbors came by to pay their last respects, and confirmed with me that after running that much plain gas through my baby, that unless I knew how to rebuild the engine, she was through. So, I have placed her in an add in the Twin Cities Free Market for parts. Sniff, sniff.....

But I have a new love. I have a brand new self propelled Lawn Boy. It rocks. I could seriously mow the lawn every day. I felt Sam deserved a new lawn mower too, as his was his brother's 8 year old one. So we went to Toys R Us and bought him a new one with bubbles. As I mowed yesterday, with Sam following me behind, as he always does with his lawn mower, I was reflecting on my mowing experiences in comparison to Sam.

The "tomborn"- Every day when we go outside to play, Sam will say at least once, "mom tomborn?". He has called the lawn mower the "tomborn" for the last year and a half (we believe it may be a combination of "combine the corn"). Ever since we could start understanding his speech better. Seems he is in love with his grandpa's tractors, but especially his combine. Before I ever could figure out what Sam was saying every time I mowed, I kept explaining to him, "No Sam, this is a lawn mower". It wasn't until one day with his extreme frustration of me not understanding, that he used his whole body in motion to show me why it was a "tomborn" (combine). He took his hands and pointed to the lawn mower, then used his body in a swooshing manner and hands, by pushing them along side the side bagger, then up. He took his fingers and wiggled them into the grass container, as if sprinkling something into it. He then screamed to me "TOMBORN"!!!! Duh, of course it was a combine. It cut the grass/corn, sent it up the container/shoot and into the bin/wagon.

That is the way Sam always thinks. He is always trying to figure out the way things go and work. He understands very quickly those mechanical things.

Today he spent much of the afternoon on his Sit and Spin from grandma and grandpa. I couldn't believe he wasn't getting dizzy. He would take off his clothes even and spin, then put them on. But as I watched him, his purpose I believe was trying to see how fast he would go with different weights on it etc... He had super concentration in his eyes. It was finally at dinner time that he came running up the stairs yelling "dot it, dot it, loot" (got it, got it, look). He turned the Sit and Spin upside down to show me the middle part underneath that stays put while the outside goes around. He didn't use any words to explain it, but just like the "tombine", his actions and face spoke and explained more than a thousand words.

I love the way he thinks, I love his dramatic movements, I love how he understands the world...from "Tomborns" to Sit and Spin.

The Four S's (School, Schedules, Scissors, and Screams) (Journal#35)

2006-09-13T17:00:00.000-05:00

And so the week started with S's and continues...

S #1- SCHOOL!!!!!!!!! Sam's first day of school was Monday. We have been preparing and preparing. Some days he likes, and others, well... not so much. The first big change went much better than expected, and that was the switch from the yellow school bus last year, to a white van this year. I was getting nervous when it didn't arrive at the scheduled time, but it was the first day of runs for them with the special education children. It came 10 minutes late, which isn't that bad, but they ask you to be ready and waiting 10 minutes early, so really we had been waiting 20 minutes with a very anxious Sam. He boarded great, and of course "scrapbooker" mom did not get any pics yet (left camera on vacation) and my camera phone was dead (typical luck for me). It was super funny when he got home, because he did the same things as usual from all last year. It wasn't even like there was a summer break.

Shoes off...coat off...backpack thrown on bench...run upstairs as fast as he can to see what is on the table for lunch (no words, just down to business)!!

S #2- Schedules!!! So I am really going to try and be good and stick to a schedule and our home program better than last year. He really does well when we use his PECS schedule.

Sam excited about the schedule? Not so much.

S #3- Scissors!!! So...me sticking with the schedule, we work in some of our home OT stuff. The real scoop is that OT is ALL home programming now. Our insurance doesn't cover everything for that right now, so we are done until it allows us to go back for a re-evaluation in 6 months. So we do our little cutting activity, and it just seems to be going backwards. He used to required me to draw a line from the edge of the paper to the object needing cut, but he doesn't anymore, so that is good....but for almost 5, and kindergarten next year, and me TRYING not to compare him to his NT brother, it still makes me wish I could help him get up to speed a little more. But it is all in his time...and that is okay. He worked sooooooo hard cutting and then gluing them on with his little glue swab. A cool thing he finally did today for the first time was to at least follow the dots I made on paper of S for Sam. He has been working on this for over a year. I wonder if I should push and add the A and M!!!

S #4- Screams!!! The little dinosaur scream has been working overtime. We are by no means stressed by his melt downs. We know he is going through a bit 0f a transition time. This morning, Brent was home to help get the boys ready for school. As much as dad tried to help get him dressed, Sam refused.

Whatever piece of clothing that Brent would put on....

Sam would rip off......

He would then scream, climb up on his bed, and literally climb his wall in the corner and curl up(there is a ledge).

After clothes being ripped off, doors being kicked, dad had done his best. And...we could not let him go to school dressed in his birthday suit...so mom caved.

I shared a laugh with my online friend THISMOM.com today about our ASD kids and their rituals and routines.

And...this is one of Sam's rituals.

ONLY mom dresses me!!!!!!!

So, we are living the 4 S's, and actually loving them all. Keep your fingers crossed that I can keep a schedule and get our life back on one as well!!!!

A Breath of Fresh Air (Journal#34)

2006-09-06T23:35:00.000-05:00

After a month and a half of waiting, we finally were able to get in and see a behavioral therapist today. One that our insurance covers with a copay (finally)!!! She has her office at the Autism Society of Minnesota headquarters. By the way, check out this adorable picture of Sam on the advocacy page of our state's website, click here! Okay, enough bragging, although I am sad, because he is already well over a year older since that picture was taken. They grow up way too fast!!

Brent actually flew in early this m0rning (he was out of state for work, we do live together:) to make the meeting. I was so glad he could be there. Given his crazy travel and work schedule, he has not missed a meeting. We asked a lot of questions about our concerns with his need for whole body stim, safety issues, communication issues, his agressive behavior when having a melt down that is leading to more dangerous situations for him and others, just lots of things.

She gave us sooooooooooo many things to work on, and Brent and I are excited to begin. It is going to involve a lot of work, redoing some of our picture schedules, creating more "therapy spots" in the home, lots of time, but mostly lots of love, which we have.

One of the things she shared with us, which I will share with my autism friends is a concept that was new to us when using Social Stories. Instead of verbalizing the written story(and doing pictures), she suggested video taping Sam doing the things we are needing to work on. For example, taping him walking safely across the street, or taping him coming to talk to us before "escaping", I mean him wanting to go out to play :). She told us she has been involved with recent studies looking more at the thing that frustrates us most about Sam. And that is he can tell us exactly what he needs to do in situations after only being told once, but he can't apply it for himself. This has been most frustrating for us, but she explained some of the research showing the brain connections with autistic children,and that they can understand and even apply to other people these procedures, but the part of the brain that allows them to see themselves doing the task doesn't always connect, even with a picture of themselves. For them to physically see themselves moving through the actions on video is finding some success with other familes who have tried it. So, we are excited about taking our social stories to a new level of "animation"!!!

She also suggested we follow through with applying for county assistance for developmental disabilities, as she thought we could use more help in the home, and could get him more services. I have put off filling out the the 200 page application (it just seems that long) because we couldn't afford the TEFRA copay, and because the "waiver" waiting list has been closed for two years with no opening date in sight. So, I am now motivated to do that again, and at least get a case worker assigned to Sam as she suggested. I am sharpening pencils as we speak (oh wait, it says use blue ink only).

The last thing she encouraged, was for us to finally look at RDI. I have been poo pooing it this past year. Trying to just read up on it, but again, thought it looked expensive, considering our stupid insurance. But, I know some of you out there have had success with it, and others also by just going to conferences and self educating, instead of paying providers and consultants. I would love feedback on how RDI has helped any of you, and suggestions on going full boar, or just taking peices that work, or whatever suggestions you have. THANKS!!!

It is nice to talk with someone, and the new behavioral therapist gave us that little motivation to get back at it, and she also gave us a breath of fresh air.

Careless? (Journal #33)

2006-08-29T22:48:00.000-05:00

I am curious that if I wonder less, that means I care less?

What I really mean is this...I am learning to not "wonder or worry about" what others think.

I used to wonder...

...what the neighbors thought, when they can hear screaming from our house and yard a lot. Sam screams a lot still, even though he is more verbal. His tantrums are getting more frequent and louder the older he is getting it seems. Although really, we have decided it is just that he can do more with his body because he is bigger. When he is mad, he is so quick to slam doors, throw whatever is in sight and scream. We don't leave windows open a lot.

I used to wonder...

...what people thought when they see us chasing this little boy (who now looks like he should know better). He runs away like a 2 year old constantly. The other night, we were outside working in the yard until well after dark and Sam escaped us. It was scary to chase him in the dark and the thought of going through neighbors yards, not knowing what you may encounter. I felt like doing one of his dinosaur screams myself.

I used to wonder...

...if people thought I was a bad parent for having this "out of control" child in public (as it appears to others). Monday was the mother of all mother days. We had so many back to school errands to do. Unfortuntately the last event was to have brother try on 5 pairs of pants at the alterations store. Patience was not on Sam's agenda (nor should have been for anyone who encountered our long day, bad planning on Mom's part). I was trying to help Zach try on pants, then have him stand on the podium for the lady to mark, while chasing Sam who was cowering under every chair he could find, or running into the dressing rooms and slamming the doors. The nice lady just smiled and kept saying, "very busy boy, wow...very busy boy, wow." I tried to explain to her he had Autism, but she just smiled and said "that's nice". She speaks minimal English, but has been a great seamstress for us this past year. At least she was still smiling when we left. I hope that means we can still come back to pick up Zach's pants next week. I don't think she kicked us out.

I used to "wonder and worry" a lot about what others thought. I grew up in a family that expected us to be perfect little puppets in public. We were always cautioned to worry about what others thought of us. It was my parents best way of teaching us to be respectful. It can also cause severe paranoia! I have realized that I have expected way too much from Sam's older brother Zach for way too long. He is just going to be 9, but we have been making him be accountable for his behavior and interactions with his brother in ways most children wouldn't understand for the last 4 years almost.

I don't wonder anymore. We will continue to hold our son's hand in almost every place we go for his safety and our peace of mind, we will continue to just hold him and love him and not discipline him while he is having a melt down, we will continue to allow Zach to just be a kid and not expect so much, we will continue to ignore behavior from Sam that could escalate if we didn't and not worry about what others think. We will continue to shop for our needs and do errands, regardless of what people think about Sam's constant jabbering, loud voice or tantrums.

It has been hard learning to care less about what others think. But I have to for my sanity and the sake of my boys who just want to be my beautiful children. I just pray that by my caring less about what others think, doesn't ever allow me to be careless.

A new planet- Buzz Lightyear (Journal#32)

2006-08-25T01:09:00.000-05:00

Just as I start to brag about Sam sleeping so much better to family and friends, it is then that my blessing is toppled. Last night was a night! Perhaps Sam was star gazing and already preparing for the International Astonomical Union's morning announcement denouncing Pluto. He does sense things before they happen I believe!! :) So, last night I decide to do a Walmart run since Brent was leaving the next day for a business trip to Kansas City (and I am not up to taking Sam shopping, considering the past week). I got home around 1:30am, and Brent and I talk to the wee hours.

Just as our eyes grow heavy, we hear a cry from Sam's room. He wet the bed. We hurry down, comfort him, clean him up. At that point, we decided to part the waters to get to bed sooner. Brent would snuggle in with Zach in his bed and I would take Sam to ours. It was another one of those nights. Sam did not go back to sleep until around 5:30, of which the time we needed to get Brent out of bed (who really hadn't slept). So both of us got no sleep. Unfortunately for Brent, he had to beat rush hour downtown to an 8am meeting, then fly off to Kansas City for the next couple days. I hope he gets zzzzzzz on the plane.

So the morning was sluggish. The boys and I were snuggling in Zach's bed. I was half conscious, but enjoying them looking at a toy catalogue together. It was a peaceful calm time for them and Zach was being such a good big brother. Sam would say to Zach, "what dat?" and Zach would gently explain to Sam what the toy was and what it did. In the middle of the boys sharing together, the phone rang.

Brent had called and demanded to speak to Zach right away. I could hear the conversation, and Brent was excited and telling Zach about the morning news and the reduction of supposed 10 planets now down to 8. Zach hung up the phone super excited, retelling me and Sam at 100 miles per hour.

Sam kept saying back to Zach, "what Zat?, what Zat?".

Zach would explain again in his scientific voice.

Sam replied, "no Zat, oanee Buzz Yightyear panet!"

Zach, "Sam, Buzz Lightyear is not a planet, he is a Disney Character."

Sam, "no Zat, Buzz Yightyear panet! Zat, Buzz Panet!"

Zach, "Sam, Buzz Lightyear is NOT a planet, he goes to planets"

Sam "no Zat, Buzz Panet!"

Zach, "Sam, Buzz Lightyear is that character all over your bedroom, he is NOT a planet!"

Sam "Zat, Buzz Panet!" "Ahhhhhhh" "Ahhhhhhh" "Ahhhhhhhh"

So much for the peaceful morning watching the two share in conversation about toys. The teridactle scream began and lasted a half hour. Sam used few words the rest of the morning. Actually the rest of the day. I do think some of it may have had to do with the barometric pressure and the severe storms and tornados that ripped through our portion of the state. Who knows?

I feel for both sides. I know how frustrating it is explaining things to Sam, and I can imagine how frustrating it is for Sam to not get us to understand. But, I also am learning to not always mediate. Zach has to learn patience and learn to try to understand what Sam is saying without me interpreting, and Sam has to learn to communicate without my translations as well. While it can be frustrating, I am just fine learning about a new planet named Buzz Lightyear!

Home, Safe and Sound...(Journal #31)

2006-08-21T16:10:00.000-05:00

After a month of travels and adventure, we are finally home. I had prolonged posting since we have been adjusting to being home and trying to get a schedule back in place. Last week was our first full week home in awhile, and it was an extremely difficult week for Sam transitioning. I had also postponed writing, as I was going to put some pics of our vacation up, but I don't have my camera. I left it at a friends of ours on accident on our way home. So as soon as I get it there will be some cute pics of the boys and Yellowstone.

Brent and I have seen some of the most challenging behaviors from Sam in a long time last week. Lots of running away and escaping, lots of self injury when mad, and lots of aggressive behavior towards our whole family and objects. Brother has seen lots of kicking, dad head butting and hair pulling and mom lots of biting. We know that he has been on sensory overload adjusting to home and coming off of travels, we know he hasn't had a "real" schedule in over a month. We are not surprised and we understand where it all has been coming from.

We were worried about how traveling on vacation would go for Sam. We had several long driving days planned. Our agenda included:
~Traveling from Minneapolis (home) to Wall, SD the first day (over 8 hour car day)
~We camped in the Black Hills for 2 nights/3 days then drove to Cody, WY (over 10 hour car day)
~Spent 3 full days driving (and hiking) in Yellowstone (but again, a lot of car time)
~Drove to Jackson Hole, WY (half day in car)
~Drove to Denver to visit friends (9 hour car day)
~Drove to Iowa to pick up grandma (over 10 hour car day)
~Drove to Kansas City to visit family and friends (3 hour car day)
~Drove back to Minneapolis (0ver 8 hour car day)

Sooooooo......the point being, Sam (and his brother) spent a lot of time in a car. Thank God for DVD players. But the real point is that he did so awesome, we have already planned our road trip destination for next summer. Brent and I were so excited and feel that if we can conquer the car, that we can now plan trips like this.

The easiest part of the trip was driving. We were so shocked for many reasons. When just driving locally in the Twin Cities, we have lots of screaming rides. Sam is all about sameness (nothing new for kids with autsim). Who drives what car and who sits where is often times crucial. It has gotten better this past year though. The other thing that is hard for us sometimes is the routes we take to places. His memory is incredible. Many times he can relay to me where we are going before we get there because of the route. So, the problem being, we can't take different routes to places if I tell him where we are going ahead of time. I usually tell him we are just driving for fun and might go to a store to eliminate battle as to which street we turn on.

The great thing about being on vacation, is that every day is new and never the same. Sam didn't know what to expect, which we feared would make things worse or okay. Fortunately that latter was the result. He couldn't dictate which way to drive because it was always new to him with a different routine never to be followed again.

Our only challenge on the whole trip was safety. We thought it would be safe and didn't bother to bring his cute monkey harness. We figured we would be in nature and not in crowds. We kind of forgot that there are cliffs and things in nature that most of us understand the danger of, oops. Sam had no fear at all on our adventures in nature. He could care less if there was a 300 foot drop from us. Our first stop at the Badlands found Sam running straight to a cliff, and left him kicking and screaming mad as Brent pulled him away. I can't count how many times big brother Zach said, "Mom, doesn't he know he could die!!!!" He even had brother worried at times. Let's just say that our stops in mountain areas and canyon areas were a little nerve racking and found us carrying him (Sam reluctant about).

But the beautiful things about Sam on the trip were the things that are autism related. Sam has always had keen attention to detail. One psychologist had told us that this could lead to learning problems down the road because of the distraction it causes him. And yes, it is an incredible pain in the butt when we are trying to walk some place in a timely matter, and he is distracted by even the littlest pine needle on our path. But, on vacation he drew our attention to some of the most beautiful things we could have missed. He would notice some little beautiful bird in the distance, or an awesome rock along the way. He was in awe of the Badlands, because of the color and shape of the rocks. I am not sure how many 4 1/2 year olds would find such amazement at places appreciated more by adults. The Badlands could lose its awe after the first 1/2 hour for some people, but Sam kept it alive for us. With every turn in the road came "totowee toowa" (totally cool) or "toey tow" (Holy cow-mom and dad are Cubs and Harry Carey fans). He could spot the tinyest bug or creature wherever we went, whereas the rest of the family would have missed it.

As we drove upon the Grand Teton Mountains at Jackson Lake, we got out. The first thing Sam said to Brent was, "is dat a pitter or real?" (Is that a picture or real). He was totally serious. It was cute.

I can't wait to post some pics. As the trip continued we saw lots of detail and had amazing fun. It was a dream vacation.

As the trip concluded, we were in Kansas City. We stayed downtown at the Marriot. Our first night there we could not fit the minivan in the hotel underground ramp because of our topper, so we had to park across the street at a different underground ramp. We came up from the parking garage to see that there was a park on top of it. As we headed to the hotel, Sam took off. Brent and I could not catch him. Brent finally got him as he ran inches to the edge of a 3 story cement drop off to the exit side of the parking garage. Sam was not scared. It did not phase him that he would be hurt. Zach was never more scared for Sam. It seems like when we just start to trust him and feel like he "gets it" (about safety, cars, danger, etc...) we always let our guard down. Three months ago, Sam wondered out of the house to the garage in the middle of the night and was locked out until I heard him at 4am. This incident led to us installing a security system. We know that safety will always be an issue, which makes us mad when we ease off and know better. The trip was awesome, but it was great to be "home, safe and sound" for now.

A Sabbatical (Journal #30)

2006-07-04T10:59:00.000-05:00

Happy 4th of July!!!!

Hope everyone is enjoying the holiday today! Need to let everyone know that I will be on sabbatical (brief break) until August 15th. We have a very busy next few weeks planned. We are off to Iowa to take Zach to church camp for a few days, and Sam and I are going to visit family and friends (dad has to work :(). Upon return, Brent and I will be preparing to go back to the same church camp Zach was at, as we together direct a high school church camp, Camp 16, there for a week every summer ( I think this is our 10th summer). We will be home for a week, and then off again for 10 days to Badlands/Mt. Rushmore and then to Yellowstone. This is our first "car" trip with the boys (although we do frequent 4-5 hour trips to family in Iowa), so please keep your fingers crossed and say your prayers that Sam does okay on the long car rides. I think we have our plan and are very excited to go!!! Thanks for everyone's support and have a great month!!!

The Boys of Summer (Journal #29)

2006-07-01T21:59:00.000-05:00

My boys got a great chance to enjoy "the real boys of summer", the Minnesota Twins. We had a great time today. We were invited by some good friends of ours who have tickets to go for an evening with both families together. As we left for the game, dad/Brent became ill, so saddly we took him back home. I was to meet our friends in our seats at the metrodome. While sad that Brent couldn't join us, we still ventured on.

I was a little nervous, knowing that we were going to save money and park in Brent's work parking ramp downtown Minneapolis. It is only a few blocks from the metrodome. I had already decided that I was going to use Sam's harness, knowing that I would have both boys and need to carry food in the shoulder to shoulder crowd once inside.

I think I have shared previously how Sam darts away quite quickly, which is a huge safety concern and constant fear of mine. Last year I found this adorable harness that is more discreet and has a cute backpack attached that you can store the monkey tail/harness in when not using.

As we parked in the ramp and got out, I went to the back of the van where we keep it.

I was putting it on Sam, when Zach said, "Mom, Sam is too big for that, it is for babies, he is four."

I replied to Zach, "No, it really is a help for Sam it keeps..."

"I know, I know", Zach quickly interrupted, "it keeps him safe, I forgot, he doesn't get that car thing, like that they can run OVER YOU. Mom, he doesn't get it does he?"

While that wasn't my most imminent fear, it was really being in a packed metrodome, knowing he could run quick and get lost, it was just easier to leave it at Zach's comment, as that too is our usual concern.

My "boys of summer" were great on the few block trek to the dome. We got there with no problems. Zach was so sweet the whole way there looking out for Sam with sincere concern.

When we got to our gate, we still had to trek around the outside of the dome on a ramp to get to our door. It was really hot, and Sam just would stop and lay flat on the ground wherever he wanted, with hundreds of people directly walking behind us. Zach started to get annoyed with Sam's constant dropping, and was getting hot himself. The little stops to rest were hard to predict and were pretty dramatic. If I tried to pick Sam up to carry him in, he would scream and do the "dead man's weight" routine. We ended up merging our way to the outside of the crowd to let Sam lay on the edge of the walkway. He does this a lot, no matter where we are. If he decides he is too tired for whatever trek we are on, he just lays flat on the ground. He doesn't care if it is dirt, grass, cement, or rocks. He just plops.

Zach was completely patient during this whole ordeal, and after 10 minutes, we were able to convince Sam that he had enough strength to make it into the dome. Once inside, we got our food (while Sam continued to just sit on the floor as we waited in the food line) and proceeded to climb to our seats. We made it in one piece!

Throughout the whole game the boys were INCREDIBLE, and I really mean it. Our friends were delighted at the behavior as well. We drove two cars thinking that my friend and Sam and I would need to make an early exit, but he did great. Zach was thrilled and rooted on Tory Hunter, a fav of his. Sam just took it all in sitting next to his R. R is our only trusted sitter, of whom whose parents we enoyed this outing with. R and Sam are great together. She really understands Sam and everything about him. I don't know what we are going to do next year when she decides to leave us for Boston University, ughhhh!!!!!!!! She has been an amazing source of support when Brent and I just need a couple hours away. I guess we may just need to move! Anyway, the moral of this story so far, is that they were awesome.

Awesome until the "potty break" that is. Brents sister K had called to tell us they were up from Iowa just for one day. K is a high school softball coach, and they were up for a coaches retreat and some workshops, and were enjoying a game at the Twins before heading back to Iowa. Since we were both there with other parties, we just decided to meet on the concourse outside briefly to say hi.

Here is where my "overstimulation/deep pressure" issue comes in....

Sam was super excited when I told him we were going to be seeing Aunt K. I had told him well in advance as well as minutes before. But...Zach was super excited too, and he was thinking Uncle J would come up with Aunt K, because he wanted to show him he was wearing the Twins Jersey they gave him a couple years back. So, when he didn't see Uncle J with her, Zach was all excited wanting to get the message to K, and meanwhile Sam started in with "overstimulation", trying again to burry his head into his brother, taking his legs to kick and push into his brother. Of course Zach responds back with the same actions, only he is over twice his size and more obvious, sooooooooooo, while Sam is rubbing his body all into Zach while I am trying to touch base with K, Zach's reactions are of course what I notice most and call him on it as well. DANG!!!!! I hate when I know I am doing the same blame game on Zach, when Sam initiates it. I saw it, it is less obvious, and easier to stop the largest commotion at the time, which is always poor Zach.

This leads me to our next step in therapy with Sam, of which I will take advice on (since we are still pending insurance approval for this new Autism Behavioral Therapist).

We know Sam seeks deep pressure.

We know he loves to seek it from his brother, who loves to wrestle back and give him what he needs in return.

We know Sam gets overstimulated easy, and when his brother is around, he seeks pushing his body into him for that relief that he usually can get at home.

We have tried weighted blankets, but Sam doesn't like them as we can tell he likes movement with them.

I try to grab him, when I see him shoving himself into his brother and wanting his brother (74 lbs.) to lay on him (37 lbs.). But, I can't always be everywhere in our home at all times. When I get Sam, I then wrap him in a blanket, apply what pressure he wants and rock him. This is what he prefers, if he can't wrestle with his brother.

The deep pressure seeking is one of the issues we still struggle with but need to get help other than our private OT, and pending our behavioral therapist.

Anywho, they appeared super "wild and goofy" the whole time I am trying to talk to K. After we got done talking, I took Sam aside, gave him a huge bear hug for awhile (which he does like for pressure as well). This seemed to finally calm him. We hung out for a few minutes longer while I then rubbed Sam's back to also calm him down before heading back up to our seats. The rest of the game was just as it was before...fun, enjoyable, and exciting, watching my little boys sit and watch...the real "boys of summer".

Any ideas on how to discourage Sam using his brother for deep pressure, so we can focus their relationship on other things, like communicating and friendship and companionship? Let me know.

Otherwise, until we get in to our new Autism expert, we will just keep on enjoying our "boys of summer"!!!

Broccoli to my ears (Journal #28)

2006-06-26T19:22:00.000-05:00

Our Sam has returned from Grandma and Grandpa's. We missed all his silly little ways. Brother Z could hardly wait to wrestle him! Since his return, two joyful things have happened.

The first is his progress with trying new foods! Sam has struggled with eating different foods for a long time. We have gone through periods of him wanting a hot dog for breakfast, lunch and dinner for days. Whatever his food of choice, it often times will depend on texture, taste, color or smell. All of his issues with food made our attempts at GFCF Diet an additional challenge. Just the fact that his food selection was so limited, and then adding the other restrictions made him eat even less during those times.

His behavior when it comes to eating foods he doesn't like requires more than the usual tricks, food games, or the typical behaviors for picky kids his age. If something doesn't look a way he doesn't like, he will push everything away from him and scream, or throw the plate or food, or whatever is in his way. So it is much more easier with an autistic child, to give in to his "favs" just to make sure he eats. This is extra tricky when there is an older sibling like Sam's big brother Zach, who is not given a choice about what foods to try. So, we are trying to manage this delicate balancing act of being "fair" parents.

Sam's private SLP, Rachel has been a great resource. She has also been getting "famous" by getting some air time on a popular Twin Cities radio station doing daily "Autism" chats from a speech perspective. She recently finished training on a feeding program for autistic children, like Sam, who have feeding issues. We are in the middle of a 12 week program where I am also involved during the sessions. We are starting to see some good progress with Sam. But tonight was the best!!! We made a breakthrough at supper!!!! While I tried to feed Sam well as a baby, I made homemade baby food for him from the time he started eating. I was so proud buying organic veggies and fruit and pureeing them myself. He ate everything then. He even ate broccoli. Needless to say, that has not been the case the last three years, once we started "real" textured food. But tonight...tonight he did it!!! Sam ate the broccoli completely gone and wanted more. Now...granted...he ate with his front teeth still (sorry Rachel), but he did it. He also made it clear that he only liked the "branchy" part, not the stems, but who cares!!!! SAM ATE ANOTHER VEGGIE BESIDES GREEN BEANS!!!!!!!

Our second excitement was the first enjoyable bike ride in awhile. Our family loves biking together, and so does Sam. He just has a hard time after awhile, and something usually sparks a screaming adventure until we get home. But tonight was music to my ears...literally. We packed him into his burley with his usual stuffed dog and his real dog, our awesome West Highland White Terrier. Let's just say that our dog Chicago is the most patient and gentle soul of a dog I have known.

But back to tonight. This evening Sam serenaded me the whole first half of the ride. He sings songs about what we are doing a lot. For example, tonight's song was "bite wide, bite wide (bike ride), tado (chicago) wide too...(repeat about 100 times)". Watching him from my rear view mirror was a delight. He was happy, Chicago was happy, and he was singing and rubbing her back the whole first half.

But then we have the ride back. And tonight it was so peaceful. He just sat quiet (no sounds, no songs), just holding his bottom lip with his finger, pinching it. He was looking around with a peace and calmness that was so sweet.

So glad you are home Sam. Thanks for the enjoyable dinner and the sweet serenade. It was "broccoli to my ears"!

A TV finish! (Journal #27)

2006-06-21T13:42:00.000-05:00

Todays post is not about autism, and it is not about Sam. It is about our adventurous day. While we are still missing Sam this week, it has been so much fun being able to just do things without too much planning and transition. Today Zach and I were able to take in some golf. After teeing off on this hole, he yelled to me,

"Mom, look at my TV finish!"

"What?" I asked.

"My TV finish, you know, like what Tiger Woods looks like after a great shot. That was a good shot, wasn't it mom?"

I started laughing. It really was a great shot. We only played at our little executive course at Eagle Lake with mostly par 3's, but he hit a beautiful shot with his 5 wood and got on the green. We ended up playing for wins for each hole, and mom beat him 5-4. :)

This afternoon he has piano and a test piece he has to pass for Sylvia. After that we are finally going to see the movie Hoot. Zach has been wanting to see it. We were hoping to read the book first, but he is into another series of books, where the characters are owls also.

Tonight we will relax...call Sam...call dad...read...and sleep.

"Not a cure for autism, but an intervention" (Journal #26)

2006-06-19T21:39:00.000-05:00

It will be hard...this week because I will miss Sam big time! We just returned from taking Sam to stay with my wonderful mother and father-in-law this week. We, meaning Zach my 8 1/2 year old, our dog, and myself.

Missing is "our rock", dad, this week. He is in Boston for business for 6 days (and enjoying the Red Sox tonight, as he called to brag that he is in the sky box behind home plate, WHATEVER! :)

Brent's mom knew he would be gone all this week so she called and offered to take Sam so I could have a little breather (Zach is finally at the low maintinence stage). She very quickly said "not that Sam is a handful", but I know what you meant Jan, and appreciate you being nice by giving me a little time with Zach. So...we left at the same time, her from Iowa and us from Minneapolis, so we could meet in the middle, and it worked pretty good this time. The boys took in two movies on the way (THANK GOD FOR DVD PLAYERS).

Soooooo.............it is ALL Zach time this week. Here is why I need to be with Zach this week, alone. Zach was 4 1/2 when Sam was born. He was essentially brought up as an only child since it took us so long to have Sam. He was used to a lot of attention and nurturing. When Sam was born, it didn't change a whole lot for him until about the time Sam was 8 or 9 months.

Sam was an incredible baby up until the 8/9 month time span. Very, very content. Never fussed except when hungry and needed changing. Went to bed great. I do always recall though, that he would rarely keep eye contact with me, or engage in joint attention. And didn't care so much about nursing and the whole bonding idea. He was fine being left alone. I noticed it so much, that I hardly ever left him alone or gave in. Sometimes he would fuss when I would pick him up. He would arch his back when I layed right next to his face with him on the floor. So, instead of letting him win,on his desire to be left alone, I brought his carrier car seat in and used that to drag him with me to literally every room in the house. He may have wanted to just hang out on the floor somewhere or in his bassinet, but I made sure he came with me wherever I was (ironically he never liked his "snuggly", and I couldn't always hold him if doing stuff around the house).

At 8 or 9 months, when he was starting to roll over, or attempt it, some fussing started. Soon thereafter, he started to need a lot more attention, but now looking back, realize there were lots of sensory issues and reasons for his "neediness".

The first things that would make him smile were his brothers crazy antics on the floor with him. Zach would lay with him (and Sam WOULDN'T arch his back as if to get away) and put his hand on Sam's tummy and rock him from side to side. It would tickle and make Sam laugh so!

As Sam became increasingly more mobile and was starting to pull himself up more (13-14 months, didn't walk until 18 months), Zach started to realize that this was a little brother in the making. Zach would go and lay on the floor on his back, and pull Sam on top of his belly. Then Zach would wrap his arms around him tight and pretend to wrestle him. Or Zach would lay his own head on Sam's tummy. Sam would scream with joy. This was their way of bonding. Wrestling is still their main mode of communication today. We later learned from our OT, that Sam's Sensory Integrations issues are what probably causes him to seek those "deep pressure" moments. He can always count on his brother to give him that satisfaction he so needs.

I mention all of this, because even though Sam and Zach are really starting to develop an incredible relationship, it (the autism connection) has been very challenging for Zach. In recalling Sam's first 3 years of life (until we received the official educational and medical diagnosis), I knew in my gut that it was autism, but not in my heart. So the first 3 years was a lot of blaming, confusion, and frustration with myself and how Sam was behaving.

Sam had major sensory issues, from needing socks at all times, to the way blankets covered him, to lights, sounds, smells and even where we were standing in relationship to his body (often times too close). Because of Sam's lack of communication (that was unintelligible), all he did was scream to communicate. If Zach came within 10 feet of him, he would scream a blood curling dinosaur scream, as we called it. If Zach put on his gorgeous smile that said, "I am going to wrestle you", and put his hands up, as if to tickle him, then Sam would laugh. But that was the only way Zach could gain acceptance with Sam.

The way Sam would play was also very confusing to Zach. Sam didn't really start to attempt with any toys, even appropriately until this past year. And that is only because of the amount of intense therapy, floortime Brent and I have spent, and constant interaction with him every time he is playing.

Sam used to just line EVERYTHING up. Usually ordinary, non toy objects. What would cause friction with Zach and Sam would be when Zach would come into a room, not knowing that Sam had been lining up the shoes for the past hour. Zach would simply go and get a pair of shoes to put on (from the ongoing line), and of course Sam's world was crushed as he knew it. Zach had just ruined his work of art. Screaming, kicking, hitting, throwing of every oject in reach...............this was the TYPICAL routine of Sam following these episodes.

Zach made his big breakthrough connection with Sam exactly (well almost) a year ago. I will NEVER forget it. Zach was trying so hard to play with Sam (of course all big brothers dream of having a little brother to play with) in the front yard. Sam was sitting in the grass "arranging" some Resc ue Heroes. Zach desperately wanted to play, but at every attempt, Sam would just do the "dinosaur scream" and Zach would take a few steps back and approach again a little later. Zach, after several attempts, in all his frustration, finally dropped to his knees right in front of Sam and said, "Okay, Sam, then just show me what YOU WANT me to do. Show me HOW YOU WANT me to play with the Rescue Heroes. YOU SHOW ME Sam!" And that was Zach's ticket in. He learned that instead of playing the way he himself wanted to play with Sam, that he (Zach) would play the way Sam wanted him to play. IT WORKED!!!!! Pretty good for a 7 1/2 year old. And...even though it is giving in to Sam's routines/rituals/ways, we don't care! It has helped increase their playtime.

We have been keeping Zach informed of every step with Autism. The poor kid has to know, he has to be a part of the therapy, he has to wait in waiting rooms with me each week. He needs to be very much a part of us and autism. We have talked with him, read him books about autism, had him read books about autism, watched shows about autism. All this to begin to help him understand his brother. This past week fused some anger in Zach. Sam couldn't communicate to Zach exactly what he wanted. Everytime Zach would try to interpret, it would lead to the "dinosaur scream" followed immediately with thrown objects. Zach left the situation very upset screaming himself, "I WISH SAM DIDN'T HAVE AUTISM!!!" My heart dropped.

To top it off, last night, Zach and I were watching "Medical Incredible" on the Discovery Health Channel (our family is big into Discovery Channel stuff). They did a preview of tonights episode that featured an autistic boy being "cured"! Zach quickly, with a smile and bright eyes, turned to me and said, "we can cure Sam mom?" "Mom, can we?" as he smiled ear to ear. I thought the show might be about chelation therapy. Something Brent and I will never consider.

While Brent and I have made acceptance and peace with Sam and his autism, it is very evident that Zach is on a different page. He is a child. A beautiful boy, enjoying the summer before his 3rd grade year. An intelligent boy in talented and gifted programming. A curious boy, who wants to understand his brothers brain. A boy who dreams of being a scientist some day.

I stuggle with all of the controversy in the autism community around the word "cure". I struggle just because it seems to tear apart. I have been amazed at the way the "mercury parents" can leave such hurtful comments to parents who choose not to seek cure, but acceptance. I appreciate those who don't judge, but encourage peace, acceptance and understanding, like my friend Kristina at Autismland, or the new Autism Acceptance Project, having its first lecture series in October in Canada, founded by a mother of a son with autism.

I struggle, not just from the controversy, but the own battle it has in my own mind and home.

What if...
... I didn't have to worry about Sam's safety in the busy city that we live in?
What if...
...I didn't have to do so many things for Sam in the same order with the same person who did it originally?
What if...
... I didn't have to worry that he wasn't developmentally delayed with speech and his fine and motor skills?
What if...
... I didn't have to worry about his life skill abilities when he is an adult?
What if...
...I didn't have to worry about how Sam will be taken care of if something happens to Brent or myself?
What if...
... I didn't have to worry that other kids may do something harmful to him because he doesn't understand when they are making fun of him?
What if...
... he could play with his brother who loves him so and they could grow up doing things together?
What if...
...he had a brother who didn't care if he was cured from autism?

See, what I am worried about, is that we don't blame autism for things in our house. We don't ever use that language. We are not afraid to tell people that Sam is autistic. We have to tell Zach's friends that Sam is autistic, because some of them have been starting to distance themselves from Zach and some have told him that "his brother" bothers them. Sam still screams a lot. Sam repeats things a lot, especially around Zach's friends when they are new, and Sam is trying to understand them in his way. They find it annoying. Not just annoying like a typical little brother situation, but annoying that they don't understand him, but annoying that he screams a lot, annoying that he talks loud, annoying, etc...

We have told Zach's friends and then have immediately followed it with "this is why he does this, because he is trying to tell you this....", etc...

We want people to accept Sam and his autism. To tell people he is just Sam, is to not identify who Sam is. Sam isn't his autism, his autism isn't Sam. He is Sam with autism in one. To only identify him as Sam, is to identify only part of who his beautiful mind is. We only know him with autism. We still need to explain to Zach how Sam is one in the same. Zach is only an 8 year old. He is only human.

I too have thrown up my arms and thought, "Damn autism!" Those times when Sam won't accept the answer I give him because it is not what his ordered thinking can hear right now. So he repeats and repeats the statement over and over, getting louder and screaming until the dinosaur comes again, until he gets the answer that fits for him. And yes, if there was a way I could get rid of the behaviors that cause harm to himself, others and objects, I would want that intervention. But that is all I would want...an intervention. Something or someone to step in and help change the course for that moment. Something or someone to step in and allow a "breather".

Brent's mom is my intervention this week. It is going to allow me time with Zach. Time to explain Sam and his autism a little more with just him and I. Time for me to give Zach some much needed time with a human being.

A friend was trying to comfort me last week, when I was feeling guilty about the time we physically spend caring for Sam (and not always Zach). She told me we do stuff for Zach "you let him play soccer, you take him to piano, you do this, this and this for Zach. Zach gets to do lots of things".

But you see, "things" is the keyword, I compensate actual bonding, together time, to keep Zach happy by keeping him busy doing "things" he likes and giving him a break when life gets too much for him with Sam. That is not the same as spending quality time that can never be taken back.

I can not tell you how excited...

...I am to have this week and house all alone with Zach.
...I am to listen to him read his latest book series Guardians of Ga'Hoole that he is into, up in the new treehouse.
...I am to go to a movie with him.
...I am to go for bike rides with him.
...I am to just sit at his soccer practice and games for a change and watch HIM.
...I am to just sit and have a quiet meal with him.
...I am to go golfing with him.
...I am to let him just talk, and talk, and talk to me (which he does so well, he has my mouth!)

...I will be when the two of us and our dog Chicago, make the journey back to Iowa to meet with Sam again!!!! And to rush straight back to the Minneapolis/St. Paul International Airport to pick up dad and be a complete family again!!!!!

Thanks for the intervention Grandma Jan. Much needed, much appreciated, much loved!!!!

A Tribute to our Rock (Journal #25)

2006-06-12T22:37:00.000-05:00

He is my high school sweetheart, best friend, my confidant, father of my children, and the rock of our life (2nd to God of course). With Father's Day approaching, I only feel it appropriate to honor the man who keeps my life stable, who keeps our family grounded and as solid as a rock.

Brent has always been a partner with parenting. I am amazed at the stresses he has with his job, his travel time, his long hours, yet his devotion and time that he commits to our family and to our boys.

He has been a part of every Autism step, from Sam's diagnosis to where we are today. From taking days off of work to take Sam to the day long assessments with the psychologists, occupational therapists, speech therapists to name a few. We went through all of the emotions together following the first diagnosis, the second and so on. He is so in love with his boys and yearns to be with them when he is away on business.

Brent has helped to keep our life normal, and to help when I have been frazzled when he returns from a week away. It is nothing for him to come home on a Friday after a trip and tell me to "get outa here" and go scrapbook at my favorite store in the world, Archiver's.

What I love about the way he works with Sam and his Autism...
...I love the way he responds to Sam and the way Sam responds to him. The way they they say goodby in the morning to the way the greet each other when he returns. Sam always needs a "tiss" and "hug", even if it is the one that Sam gives when he doesn't want to touch. He crosses his arms across his own chest, patting it, saying "hug". Likewise, his "tiss" is Sam kissing his own hand several times but looking at dad to do the same.

...I love the time he spends working on our home therapy with Sam. Here he is working on Sam's speech words that we do every day. Sam loves to be tight and have our legs wrapped around him in the "green chair". Sam has a cute way of getting the picture card after saying the word correctly, then placing it through daddies leg (the tunnel) to Sam's lap, where he then puts it in a special baggy (Sam has this thing for baggies).

...I love how he will do anything for Sam's safety. We have ongoing problems with Sam just leaving the house anytime of day and night. After a recent incident where Sam wondered into the garage in the middle of the night, Brent had a security system installed within 48 hours.

...I love how he keeps his time balanced between the two boys and creates very special times alone for our older son, Zachary. They love sneaking away for long bike rides. Their favorite times together are Saturday mornings at Caribou coffee (there for hot chocolate) where they enjoy playing checkers and Stratego by the fire.

...I love how he took the time this past month to build a treehouse for the boys, and a getaway for Sam (who will spend hours in our back yard). This was a huge deal for our "pencil pusher" dad, who surprised us all with his Home Depot purchase power and carpentry skills. He made an 8 X 12 monster of a play setting!!! Right amongst the birds (Sam's biggest obsession right now).

...I love his patience with Sam during his melt downs. If we have to restrain Sam, he does it with such gentleness and love, to keep Sam from hurting himself, others, or the typical objects. You can see the concern and care that Brent has at these challenging times. His face is that of utmost love and compassion. He truly wants to understand his Sam.

...I love that he is the father of my children.

Happy Father's Day to the love of my life. Thanks Brent for always being our ROCK!!!!

Paul in love...(Journal #24)

2006-05-31T11:45:00.000-05:00

Tonight, Nightline will be featuring a special on Autistic adults in love, specifically a gentleman named Paul. This is the video clip: Autistic love in bloom

Just an FYI. Not much time to blog today.

To Katherine McCarron (Journal #23)

2006-05-24T12:52:00.000-05:00

Today is a day of mourning in the autism community, as yet another parent is accused of murdering their Autistic child. The last two weeks have been witness to two murders of autistic children. Christopher Degroot, 19 years old, and 3 year old Katherine McCarron. Both deaths have struck me, but especially little Katherine, just a year younger than our Sam. The Autism Hub, is dedicating today as a memorial to Katherine McCarron to honor postings for her, and tomorrow it will be shut down as a day of silence for her as well. I inserted a picture of the flower Freesia. Freesia resembles innocence. I can not help but think of the innocence of Katherine. It is hard to even think of what to write, so I will share a brief thought and some blogs I respect who have dedicated their posts and wisdom to Katherine this day:

What we must do!
None of us may have known Katherine physically,
but we all knew her little soul to a tee.

We never knew her well educated mother, a doctor,
but I hope she pays the price for what she did to her daughter.

No matter what our children do,
they never deserve to lose their life too.

As an autism community may we never lose sight,
to come together and do what is right.

Not right for ourselves or what we want our children to be,
but right for our children so all the world can see.

They are people too with minds so curious and new,
to love them and care for them is what we must do!

Thanks to these fellow bloggers posts, whom I respect, on your words today:
Autismland
AutismVox
AutismDiva
Mom-NOS
Left Brain/Right Brain
Autism's Edges

The good, the bad, and the ugly...but it's all good (Journal 22)

2006-05-18T23:33:00.000-05:00

The Good...it was such a perfect spring day today. It was a "no afternoon therapy day", which meant I got to enjoy Sam in his sandbox in the back yard, sitting on a warm deck amongst nature.

The scene was gorgeous. I was on one of our upper level decks which sits among tree branch level. One particular branch actually touches the deck from a storm last fall. It is surreal in that you feel like you are literlly floating at tree level.

The feeders were attracting everything today from Blue Jays, Cardinals, Gold Finch and Sparrows. They were actually congregating around the feeders instead of arguing.

But Sam...he was the most beautiful site. Watching him sit and sit and sit in his sand. To watch his eyes as he ran scoop after scoop of sand through his fingers, or onto his dump truck. He would occassionally stand up and walk through the garden on the stepping stones, pounding each one firmly as he plodded through. Only to go back to his sandbox on the top terraced part of the garden.

And Brent and Zach...they were as beautiful (even though not with us). Brent had taken a day off of his incredibly busy schedule to volunteer as a chaperone on Zach's 2nd grade field trip to the Mill City Museum. Zach was in heaven to have dad go. I could not wait for them to open their sack lunches on the trip, as I had packed them each an M&M's M-azing bar, and had wrote "you are" on the top of the wrapper, followed by "love mom". Picturing them together on a bumpy school bus ride, sent me goose bumps of long needed happiness. This day was so good!

The bad...has been the last couple weeks. I am in a rut spiritually, weight wise (eating every bad food I can), emotionally, oh, and let's just add physically for the fun it! Trying to deal with my little stinko attitude of late, I decided to relax on the deck, to meditate, and to get my act back together again. I decided to jump into the kitchen and grab my new attempt at being healthy, a V8 Fusion. Since I had made it this far into the house, I decided to check e-mail. (I have been more and more comfortable leaving Sam for short spurts since our back yard is fenced in, gate locked, and video monitor of him at my computer).

When I got to the computer, an e-mail had arrived from a fellow autism blogger asking me about the discussion about the new Autism Speaks video entitled Autism Everyday. While this video has sparked many rampant posts among autism bloggers, I will not go into detail on my opinion of it. I am very on the fence, and feel there have been many eloquent writings about it already from both sides of the fence.

What I walked away from my computer feeling was even more "bad" and sadness. I am so sad to be a part of a community that seems so divided. Before the video there have already been intense debates over "treatments, to cure, to not cure, remediation, chelation, biomed, minerals, vitamins, GFCF diets, ABA therapy, whether a child has autism, or the child is autism, the list goes on.

I am sad because the autism community can be so divided at times, instead of coming together to focus on ways to improve awareness of autism so that life will be better for those in our lives with autism. It is the awareness piece that the world can benefit from, to better understand our loved ones.

We don't have to agree on causes, treatments, cures, etc...I enjoyed the Time article from last week that compared autism and recent findings to cancer. For me personally, I have always believed that autism has many possible causes, from environmental factors to genetics to mercury to name a few. I have also believed, as in with cancer, that treatment, if one chooses varies among individuals as well. We all just have to do what works. Just because some have done on form of treatment and worked, it does not mean it will for the next. I wish people would understand that. Do you think in the cancer community, that a breast cancer survivor would get up and say, "Well, yes mine was in stage 3 like yours, but we fought it aggressively by doing, this, this, and this. If you would have chosen the same treatment, you would have been cured too." When in fact people acquire same types of cancers, but they often respond to the same treatments differently, and need to choose a different course, and may still die from it. What I am babbling and trying to say, is that those in the autism community should be less concerned with judging one another and their treatment/non treatment methods, and more concerned with creating an awareness in the neurotypical world about autism and just how individual it is.

The ugly...happened. As I sat on the deck with an upset stomach thinking about all of the debate and judgements being made, I felt it. I felt this incredible plop on the back of my head. It couldn't be a rain drop, there wasn't a cloud in the sky. Oh Lord, no it wasn't...it couldn't be. I raised my left hand up over my long blond hair to the back of my head. I felt. I brought my hand back and looked. NO!!! This could not be. Not ever in my 37 years has this happened to me. I brought my hand to the front and stared. There on my hand was a slimy, greenish, yellowish mixture of BIRD POOP! Yes! A bird pooped on my head. This was a perfect ending to a bad last couple weeks. Bird crap on my head!!!!!!

But it's all good...really. Because my day turned around. Later that evening I received an e-mail that was "all good". It was from a mom of quads, with two sons on the spectrum from an area suburb. She saw a comment I left on a fellow bloggers page and noticed that I was from Minneapolis also. We have already had e-mail conversations, and I look forward to chatting with her more and meeting her in person. I look forward to creating a community with her that may allow its members to agree to disagree, that will be there for one another and try to create a better awareness of this world called autism. So what if it is only us for now, for Jesus said, "whenever 2 or more are gathered."

It was the good, the bad and the ugly...but it's all good!

It's been a "Dandy" ole time! (Journal #21)

2006-05-11T03:26:00.000-05:00

"Dandy"lion time that is! Sam's eyes are always looking. He is constantly going, constantly seeking the details in his world. We enjoy watching and waiting to see what is next.

When I speak in terms of next, I mean, what will his next fixation be? What will be the thing that sticks in his mind obsessively the next couple of months? I remember all too well all of the diagnostic tools and assessment questions when Sam was being evaluated. I remember the questions about odd play or lining up toys, or overly obsessing over an object. I knew what those questions were looking for in terms of answers, but I didn't want to give it to them in a way. For Brent and I knew that what we would say, would further lead to the diagnosis which I, personally, had always feared. I curtailed my answers somewhat, and I actually remember not telling the full truth on his educational assessment because I did not want him to have Autism. I wonder how many criteria he would have met if I had been totally honest.

But here, this is why I did not want to tell the whole truth...I felt like some of those questions made him seem like he was completely thoughtless. That lining up toys in bizarre fashion had no meaning. That doing the same thing over and over again was absurd. But it was the opposite for me in my understanding of Sam. I always felt, and continue to feel, that he always has a purpose or an outcome that he wants when he fixates on something.

If it is lining up objects, there always appeared to be a reason. You could just look at his little face thinking so hard and know he had a purpose. His little eyes squinting. Crawling on his hands and knees to get floor level for a better look at what he had done. Laying on his tummy, holding his head up with his hands, staring endlessly at what he had just created. He was proud! Not thoughtless. He was thinking about what more he could add on to it. Not thoughtless. Above picture shows how he took all of his books and my potted plants and lined them all around the perimeter of the patio one day last May. The picture below is him ,over a year ago, creating inside.

For Brent and I, the most amazing thing is his memory of what he has created. We call them "shrines". Sometimes we have to leave them for days. He screams with great pain if anyone even touches his creations. Poor Zach can't come within feet without a shriek from Sam. Zach is seriously, the most patient and loving brother in the world.

Perhaps what is most intriguing about these creations, is that they contain many objects, toys, and "latest fixations". Many times there are too many objects to count. If he is out of the room, and you move an object an inch, and one that isn't even real visual, he will notice immediately. He memorizes every position and angle that he has arranged everything. He has a purpose. Sometimes Brent and I think he is creating some type of map or layout. We think he will be a famous architect some day.

In his "shrines" or lines, or whatever they are...they always look like they have a purpose in his mind. The challenge is the "fixation" of the day, month, week, or year. What is the object or idea that he will incorporate into everything he does? Well...for the last 2 weeks and still holding strong...it is the dandelion. Walking anywhere near those lovely weeds is virtually impossible, as Sam believes he needs to snatch every single one up and bring it home.

This has been his latest ritual:

1- pick dandelions all day when outside or at brother's soccer practices

2-place them in a ziploc baggie as soon as I can

3-carry baggy with me everywhere...school...church...bedtime...mealtime

4-put them on the floor in toyroom and create a "shrine" of lines for them

5-when they look dead... cry, scream, yell and throw them out of the baggie (along with all the grass I have collected) on the floor, scattered as much as possible

6-repeat steps 1-5

We just love his little mind so much. While sometimes it is frustrating when we don't understand, we always know he has a purpose for everything he does. This weeks issue of Time helps us to reaffirm what's in his beautiful brain...

...of why he has his little stims

...of why his routines and rituals are important for him to feel safe

...of why he says or doesn't say things

...of why the way an autistics brain works is so amazing

...of why we are going down the path of acceptance that we have chosen

...it is all to honor this "dandy" little boy!

This week in Time... (Journal #20)

2006-05-08T22:55:00.000-05:00

Hope everyone takes "time" to buy this weeks issue of Time Magazine. We're looking forward to getting it delivered in our mailbox anyday. Thanks to everyone who shares with us their desire to learn and understand Sam and us, this may be an additional resource that will help. A fellow autism blogger, Kristina Chew , did a review of the article at Autism Vox . Happy reading.

It's all about faith... (Journal #19)

2006-05-04T22:31:00.000-05:00

One of the hardest things to teach Sam, will be about God. Of course we have already been doing it, but he is still 4, he is still in that concrete stage of learning developmentally. But...Christian faith is more than concrete, it is the most abstract concept one can understand, and you truly can't believe it without faith.

In remembering my undergrad days and child psych classes, of course it is Piaget (the educator in me) and his theories that I recall most, and then I think of Sam. I remember the clinical experiences when I was to work with a child in all of the developmental areas and apply his tests. My first paper revealed appropriate responses from the children I worked with at each level. I wonder if Sam would have fallen under the category of "appropriate".

Tonight I was looking at some old texts and remembering those trials and thinking of where Sam would be in those stages of intellectual development. Sadly, there are a lot of things that would reveal he is still in Piaget's sensorimotor stage. Many times he is still easily thrown with the simple concept of even object permanence. And of course with all of his sensory issues, it makes me wonder if he is stuck in it.

This all takes me back to my original thought about God, faith, and teaching it all to Sam. You see, by the time we are in college, most people should have acquired Piaget's last stage of intellectual development, the "formal operational" stage. This is where abstract thinking really comes in.

Sam is so literal and black and white in his thinking. There is never any gray. He does not understand concepts like "in a minute" (even though he can say it), or "I don't know" or "maybe". He has to have yes or no questions. When he first started developing more language, his echolalia language really demonstrated that.

He used to repeat the same question over and over and over again. It would drive Zach (my oldest son) and I crazy if we were in the van with him (and couldn't escape it). So...brilliant me, would ask the same question again, but before he could repeat it this time,I would immediately follow with "say yes or no". So now, Sam frequently asks a question and immediately says "say yes or no". Then you have to guess which answer he wants. If you say the wrong one, look out, as he will keep saying the same question over and over until you answer it the way he wants.

Hence, some of this babbling (which my close friends know I am good at) does lead me to my true inner thoughts. Will Sam ever have a meaningful understanding of God? Does he need to? I know many people and friends who are fundemental in their faith, who would lead me to believe that if my son never understands Jesus as his Lord and Savior, that he will never go to heaven. But, I say to my fundy friends, why do we have missionairies? Churches send them to share the word of God with those who refuse to believe and those who have never heard. I have always believed that God would never throw away a child in Africa who has never even been told about Him. What kind of God would that be? Not the God I know and love. While Sam has been told, how does he understand it and comprehend it if his mind can not do that the same as you and me? To me, God see's him like that child in Africa.

In Psalm 103:13-14 it says, "Like as a father pities his children, so the Lord pities them that fear Him. For He knows our frame; He remembers that we are only dust." God knows our weaknesses and understands. God knows all about us and who we are, he knew us before we were born. He is the only one who knows the mind of our Sam and autism.

For us (Brent and myself), we trust, believe, and have faith in a God that will provide for Sam. We just want him to be able to experience what God's love feels like. And even if Sam can't, he still has agape.

So how do you teach a child with Autism about God? You still pray with them, you still try to teach them to pray, you tell them the Bible stories and you love them. One good thing about our Sam and his autism, is his memory. He memorizes every routine in our life and he memorizes stories, movies and books. He has also memorized our meal prayers and our bedtime prayer. And while he can't really say a bedtime prayer, he lets me say it with him and he folds his cute little hands. Our prayer every night ends with God blesses. I say God bless, and he tells me who. Grandma, you will be happy to know that you are the first God bless each night for the last couple years running, even though he calls you "damma". I know he will be able to say the Lord's Prayer some day too.

Faith from family and friends...
I write this a good three weeks or so after Easter, but this whole faith thing has been on my mind. Easter was a very stressful time for me this year, when it is supposed to be such a wonderful ending to the Holy Week. We were going home for Easter to Brent's folks in Iowa for the first time in many, many years. Brent and I have been youth leaders at church for the past decade, and the youth always do the sunrise service. Our pastor has been graciously letting us dwindle our way out the last couple of years.

While I was very excited about celebrating with family on the farm, I was very nervous about church. Brent's home church is a beautiful little church with historical architecture that includes wood pews and a graduated wood floor. I love this church. It actually feels more like a church than our own at times, as our church in Minnesota has more of a contemporary feel. I also knew that Brent's old church does not have a nursery. What to do with Sam? He has a real hard time sitting, and church can be hard with him when hymns are playing, as he usually would retreat under a pew/chair or something. Will he scream? Will he need to run? I didn't know how to prepare, other than before we left from our home, I had showed him a picture of a pew (we have chairs) and talked to him about quiet voices, yada yada yada.

I was already sweating bullets before we left the farm house. And, as luck would have it, there was a full house in church on Easter Sunday. And, where was the only large enough space to accomidate Brent's entire family and everyones children? Yes, the front pews, where no one ever wants to sit. By now, my Secret Deoderant was no secret. Okay, what is in my purse? Do I have enough of his sensory things that he would rather line up anyway? Did I remember our sugar free Tootsie Pops? Oh, and where are my kleenex for his drooling, I can't dry clean this outfit again? I was freaking, but trying to look all calm and collected.

While all this is going on, my rock is firm beside me. Brent. He is always my rock. He can tell when I am losing it, which is usually followed with a gentle, inconspicuous tap on my leg, which I usually follow with a loud "WHAT?". I am such a butt sometimes. He is keeping Sam between us while I keep Zach and my neices preoccupied. I am trying not to think about what Sam may do.

Then the organ starts (oh Lord, literally). We have carpet in our church back home. Sam was not ready for how loud it would be with the accoustics. What is he going to do? I am trying not to look at him or let him see me look at him. Then I feel his cold little hands pulling on mine. He is covering his ears but he motions for me to put my hands over his ears too.

I comply.

"HARD" he says loud over the music. I try to press harder.

"HARD" he says again. I feel like I am placing suction cups on his little head.

I am calm. This is the same routine we go through at movies. It is familiar to me and him now, and I think we both are better.

As the service progressed, it was obvious he was needing more space. My fear was him going under the pew. Where would he go from there? We are in the front row. Would he dart straight up to the communion table?

Calm down. He just needed to create his own space (as Brent reminded me). He sat quietly on the floor between Brent and I. He took all the Bibles and hymnals and placed them around him to create his space. "The door" was next. Sam has to always create these spaces for himself, and then he adds "a door" as a final touch.

"The door" this day would be my backpack purse. He nudged at it from the other side of my legs and affixed it perfectly to enclose his safe place. I looked at Brent, he smiled this calm, "see, he is okay, he just needed his space" look at me. I was calm now.

After church, I was reminded of my own little lesson on faith. Sometimes (as a good friend once said) you have to "let go and let God". Yes it is a saying heard forever, but our friend Judy made it real. I should have listened. Thanks Brent for your faith and being my rock.

As I was preparing to leave (and had left Brent to fill the van with our own boys and all of my nieces, sorry Brent), Brent's pastor pulled me aside to tell me about Build a Bear Workshop . She told me that they were having a special bear for Autism Awareness Month. She just thought we would like to know. I thanked her, and told her we had heard, and that Sam and I were planning a special trip there together. What I didn't tell her was that the special bear they were using is called "Nikki III", which has even more meaning for me, as my little sister who died a couple years ago was named Nikki. So Sam's little snuggly bear we would make, was also his little angel watching over him. Just Brent's pastor acknowledging the Autism, and letting us know she cares, provided yet another lesson..... "faith and friends".

Then later in the day, while all of Brent's sisters and their families and his aunt and uncles came, another lesson on "faith and family". Brent's Aunt D (who is in her 60's and facing her own challenges with Parkinsons) pulled me aside also saying "Is that underwear Sam is wearing?" She knew we had been struggling with potty training for awhile.

"Yes, we finally did it! We took a week straight of potty bootcamp at home." I replied with super excitement, as you can guess.

Aunt D went on to tell me that she was so happy and so surprised. She said, quote, "wow, all of the stuff and novels I have been reading about Autism lately say that it is sometimes 6 or 7 years old or later."

Aunt D doesn't know, but that right there said so much to us. That first of all, why would she care to catch up with Autism when she has so much with her own health going on, and second, that she is taking the time to care and understand our child better. ...."Faith and family."

One of my favorite quotes is "Faith is not believing that God can, it is KNOWING that God will".........again, it is all about faith!

A year ago... (Journal #18)

2006-04-26T22:41:00.000-05:00

A year ago...we first heard someone tell us what we already suspected. "Your son has Autism." Are you sure? He just likes things a certain way. He lines up his toys instead of playing with them because he is too mature for toys and he is bored (that is what daycare thought too). He just has to have his socks put on first because........or he just flicks his middle finger and thumb together because his great Grandma Cottington used to do that. "Are you sure he isn't Asperger's though?". Hmmmmm....straight up Autism. Okay.

I wish Brent and I could have looked at things so simply. While I had suspected it since Sam was 4 months old off and on, it still slapped us on the face when we heard it from the first psychologist.

When working with the school assessment team for the educational diagnosis, the teacher in me tried to act all cool, like I knew everything. Yah, right. I was freaked. I remember crying to myself in the middle of the night. I remember Brent and I replaying everything Sam did since birth. I would question it saying, no it can't be because he can do..... and then Brent would say, yes he is, he does this and this and this. Brent and I would challenge each other, question each other, try to doubt the diagnosis, but we always came back to "we know better, quit denying it." We both knew in our hearts that he had too many of the symptoms, the lack of speech, routines and rituals that ruled our life, difficulty understanding us, tons of sensory issues, motor issues, loss of skills he had, incredible infatuations with weird objects and things, he drooled, had problems feeding himself, he seemed fearless, pain free, all to name a few. At 18 months he could count to 20. At 4 years old today, he needs help counting to ten and sometimes 12. He forgets colors and things he has known before.

We got the educational diagnosis first. When the school psychologist told us their final results, it was a beautiful spring day. I was teaching in my classroom at school when I got the call (previous contacts had eluded to autism and they had been using the word with us frequently, but it was just getting that final confirmation call....ugh). It was Brent first. He was with Sam. They had just left the last day of his testing. Brent said they confirmed the "autism" word, and that I should call the psychologist myself, to see if that is the same thing I would hear. So, during a break in between classes I called her back. It was true. Brent was hearing things right.

The rest of the day I spent at school, while Brent could not go back to work. He couldn't. He needed to be as close to his little boy as he could. He yearned to start seeing things the way Sam did in his own little world. His eyes tells us everything about him.

After hanging up the phone, I couldn't stay in the classroom in front of my students. I teach alternative education to middle school students. The most challenging students in our building and district. Many are involved in gang (wanna be) activity. While I connected with them, showed compassion and care and love for them, there was still a side of me that could never let them see me cry. Having my co-teacher and EA still in the room, I excused myself then ran to the bathroom to have a good ole cry. As I was coming out, I will never forget that God had me literally run into one of my best friends, confidant and co-worker in the building. R was who I needed to run into. She noticed my face and of course I spilled my guts within seconds. I will never forget our walk around the school building that day. At the end of our walk (when I needed to be getting myself back in that classroom acting normal), R said to me, "Laura, God couldn't have given this to two more perfect people. He knew you could handle it and make great things with it."

"I can handle it?" Yeah right. Like I try to be this great Christian or something. Who am I that would be so blessed to have this happen too? But.....it is there that I stopped any conversation with God about this in a negative light. I really did. I never once blamed God for this neither did Brent. Although I do blame myself still wondering about my pregnancy and care and exposure to the environment that I may have done. My first child was premature and now the second autistic. Maybe I just did not do prenatal care as good as I thought. I know I slipped in a couple extra Diet Cokes with Sam. Oh, who ever knows. What I do know, is that R provided for me that day, something that a mother might do. It felt warm, caring, and she is always sincere, and I will be forever grateful that she was in my pathway as a charged out of the bathroom that day.

While all this was going on with me at school. Brent had resided to take the rest of the day off and go to the park with Sam. I received pictures via our camera phones that Brent sent of Sam playing in the rocks. Brent just wanted to take him all in and love him till the ends of the earth. I have truly been blessed with an incredible man. As the school day seemed to go on forever, I couldn't wait to get home, pick up Zach from daycare and join up with Brent and Sam.

After school was out, I started to panic. Wait, we need a medical opinion, we need a second opinion. How can this be? As I drove to get Zach, I put in a call to Sam's doctor to tell him what we found out and to find out what we do from here. I had to leave a message, but I knew he would call later.

All we wanted to do tonight was to spend time together (Brent and I) to process, to figure it all out. But, as is life with little boys, our night was crazy. Brent was taking both boys with him to Zach's soccer practice while I was going to attend (ironically) Zach's parent meeting for the districts talented and gifted program of which he tested into. On this day, literally, one child was staffed into our districts special education program, while the other was staffed into TAG.

I was waiting in the parking lot when Dr. Kuperman called me back on my cell. I was so upset and still denying, but he was so kind and caring. He said he wasn't real surprised and told us exactly what we should do next. He had referrals ready the next day for speech and OT therapy. He really helped to calm us. He even gave us some suggestions for some thorough medical diagnosis too, and where to seek those.

Finally bedtime. Brent and I could be together alone, to talk, to be sad, to be mad, to wonder, but to smile too. Whenever we talk or think about our two beautiful boys, they just make us smile. Even when it is sad news.

It is a year later. Sam is speaking so much better. We are still in speech and OT therapy, he also receives therapy at school in his early childhood/special education program.

While we have no clue what his future will be like, we do know this...
...that God is bigger than all of this and can take care of us
...that Autism is not a death sentance, it is just another way of life
...that if you keep humor in your life, there is less pain
...that if you keep family close, there is more love
...that if you live for each day, each moment will last forever!

A year ago....we thought our world would end.
Today...we are better, closer, more in love with God, each other, and the world. All because a year ago...we learned to look at the world more differently and unique, through Sam's eyes.

Ufta, Saliva... (Journal #17)

2006-04-21T21:56:00.000-05:00

Ufta, Saliva...and I am not even Norwegian. But truly, yesterday was an "ufta" day. Sam had one of the most challenging days he has had in a long time. Oh, and saliva was a big part of the day. So, if you have a weak stomach, don't read on.

The day started like any other school day, except he had a hard night sleeping, which might account for the crazy day. His meds have been working so well, I am really hoping it was just a glitch.

Transitions were a little more difficult getting clothes on and ready for school. Eating is always an issue, but I don't recall that he ate any more or less than he usually does. He definitly did not want to get on the bus. And to top it off, he had a substitute bus driver, which could have added to the day.

After he gets off the bus each day, he has his little routine. It is actually very cute to watch. It usually takes us awhile to get into the house, as he spots every new leaf, seed or rock that lands on the driveway. He always insists on picking up each one. We finally get to the front door, he rips off his coat and shoes and runs up the steps to see what I have on the table for lunch. Same routine every day. But........today, I knew we were in trouble when he got in the door, and instead of him taking off his coat, he looks at me and screams "OFF!!!". Saliva is drooling out like crazy. He is slobbering all the way down his coat, which now is as shiny as a tire rim. When his drooling is worse, it usually means something is going on. Sometimes he is sick, sometimes he is tired. We just never know. I calmly say to Sam, "Use your words. What off?" Even though I know it is his coat. "MY TOAT OFF!". I again respond with a calm voice, saying "please?". Knowing that to ask him to try to take it off first as usual, was out of the question today. "PEASE!" he yells.

So, we get done with the coat ordeal. Now he starts throwing his body and legs all over the foyer. It is obvious that he is trying to take his shoes off by standing up and not using his hands. He is screaming and throwing himself all over. I again say in a quiet voice, "Sam, mom help with shoes?" He shakes his little head yes, but he has tears in his eyes and he looks exhausted by now. I know he is a big boy and 4, but I can't help but sweep him up in my arms and carry him upstairs to the table to eat. He lays his little head on my shoulder and snuggles in for the short ride.

I always have his lunch ready, as his bus gets back from school well after 12 noon and he should be hungry (but never is). Eating has become a whole other issue, perhaps worth a blog later. We get to the table and of course he starts screaming. He is not happy with the turkey and green beans he sees. Our typical song and dance at the table has begun. I try to trick him, convince him, encourage him to at least sit down (a rarity). I tell him he has to have four bites of turkey and count them out to a single place where he can see them. He takes the meat and throws it at me and the floor (Chicago, our dog, is in heaven, and hmmmm.......no wonder she was 3 pounds heavier at her appointment this week). Sam continues to stand up on the chair screaming "ALL DONE". I tell him "sit down". "4 bites" yada yada yada.......the dance would continue forever. He finally puts a bite of turkey in his mouth (which he has liked before), but opens his mouth and lets it all fall out, chewed up and all.

Needless to say, the rest of the day was similar. Little use of his words, nor were they appropriate when he did. He would ask for water or other drinks throughout the day, but when you gave it to him, he would take a drink, open his mouth and let it fall down him to the floor, then laugh.

He spent a great part of the day running his fingers over everything and knocking everything on the floor. He has always been very tactile, needing to touch all that he sees. When he stands next to me, he always pushes into me touching my arm and feeling my hands. Wherever he goes he needs to touch and run his fingers over the object or person. Today was just one of those days that put me over the edge.

It seemed he was doing lots of sensory seeking things today. So, I even did some brushing therapy, did the old joint compressions, wrapped him tight in a blanket, and made him sit in his "bean tub" for some time (which usually calms him).

Then it came time to pick up his brother from school. I showed Sam his schedule so he could visually prepare. Gave him lots of warning. Used our cool timer (the Time Tracker by Learning Resources) so he could mentally prepare, and bam! Major melt down when it was time to pick up Zach. I can usually spare a couple minutes, but today was rainy, and I knew that faithful Zach would be in the same, unprotected by the elements spot, he usually is. While Sam is screaming, I resort to picking him up and putting him in the van while he is kicking, clawing and hitting me.

While being a stay at home mom now, after 15 years of teaching , I have finally begun to adjust. The one area I am not adjusting is the parent pick up/drop off scene. I don't really fit in. We only live 3 blocks from school. All the neighborhood parents, especially this time of year, walk together to pick up the kids. Every day I drive by, and they just look at me. I am sure they think I am stuck up or lazy. It is too hard to try to explain to them that walking with Sam is too hard. That it is much easier, no matter what his mood, to put him in the van and buckle him into his booster seat. Instead I feel like the fat, lazy loser who doesn't want to walk. Are you kidding? I love our Burley trailer/stroller, I love walking our dog Chicago with us. It just comes down to the fact that when I have to be somewhere by a certain time, that a lot of the time, no matter how I prepare Sam, it is usually a battle.

Needless to say, Zach was a saint and so patient with his brother. More so than his mother. Sam continued to refuse to use many appropriate words and screamed the rest of the day. He insisted on putting everything in his mouth, licking almost everything and spitting everywhere for no reason (it appeared, we know otherwise, in his little mind, he was trying to tell us something). Supper was chaos, bedtime was nuts, and all I have to say is....."Ufta, saliva!" Too much for me today :) Smile, there is tomorrow!!!!!!!!!!!

It's the little things... (Journal #16)

2006-04-10T01:54:00.000-05:00

It's the little things that can make life so awesome. While we had the typical meltdowns this past week, it has been the little things that have made it one of Sam's best weeks in a long time.

It's the little things...like his finally letting me complete the home therapy part of his speech this week without major distractions and tantrum's. The bad part of his rigid routine's, is that once something has been done a certain way with a certain person, he doesn't let it happen. In the past, it is hard to complete tasks like the home speech work. Sam will scream and push me away any time I start to work with his picture cards or words and will say "NO words, Ratel words." (Ratel for Rachel). Or when I correct him the way Rachel (private SLP, above in pic) does in her sessions (because he understands that way best), he gets very angry and will even hit sometimes saying "oty Ratel" (only Rachel). Or he'll sometimes say "word teater!" (word teacher, Rachel), meaning only she can teach him this. Well this week he FINALLY let me and accepted his rewards for completing his task! Usually, anymore, we can't even reward with typical treats or anything, so I have figured out to actually wait until he has started a task he wants to do and then interrupt by using the "First this, then that" trick. It's the little things...that make life so great!

It's the little things...like him finding a friend to play with at the part (oh my gosh, I meant to type park, but that is how Sam would say it, how funny, how I start typing like he talks!) yesterday! We try to take him to lots of places a week where he will be forced to socialize with others and to force him to handle the loudness and business that can sometimes overwhelm him. He has not been a fan of indoor playgrounds like our towns Maple Maze or New Brighten's Eagle's Nest or any McDonalds Playplace. It usually makes me sad to watch him at these places, as he will either cling to me or stay very close and often times cover his ears. I will literally try to push him up in or encourage him to talk to someone. He will also just hang around the entrance of the gym set and just watch others going in forever.

This weekend was great though, Brent and I took the boys to Edinborough Park in Edina. It was only Sam's second time there. He went off right away and came back first with a friend before his very social, 8 1/2 year old brother. Sam was so excited. He brought his friend to us. Granted, it was a younger child, who would do and go wherever Sam told him, but we were so happy it brought tears to my eyes (if Brent wasn't a guy he would have said the same :). It's the little things...that make life so great!

It's the little things...like the fact that he is finally getting sleep and doing so much better at school. I have been reluctant in the past to post it, but yes, Sam is on meds for sleeping at night. While the "biomed/alternative med only" group will "post me" now, I am not afraid to say how much we trust our medical community. And, while others will "ooooooo, they are doing meds......", I would rather do something tested than "stuff" that has no FDA approval or doctor approval. He is functioning much better than before. While not perfect, and never will anyone be perfect, it has been great. He will focus more for us at home, perhaps the whole reason he will sit better to do the home therapy stuff, and follows us better. We all need our sleep. Now that mom is finally getting more sleep too, we are all much better for it. It's the little things in LIFE that can make it so GREAT!

Autism Podcast (Journal #15)

2006-04-04T10:30:00.000-05:00

I have been blessed to find this great resource to those families with Autism. "Autism Podcast" is a great website that features resources, talk shows, quick tips and advice for parents. The website's creator is Michael Boll. He is dedicated to providing information about working with children on the autism spectrum. The website provides interviews and other resources. Audio content is distributed on this website and as a podcast. You don't have to have an Ipod to listen to the podcast. The link to his page is provided on the column to the right under links.

While a year ago, Brent and I thought our world was shaken with the "official" diagnosis, I will retract and say it was "shaken up" to only be sorted and sifted with blessings.

Sifted blessings:

We have found this great community of support and resources through the Osseo School District and Sam's therapists and teachers there (LeeAnn/SLP, Jenny/Special Ed teacher, Tracy/OT, Carol/para). Incredible!
We have met people who are in our same shoes whom we can share stories with at North Memorial Hospital Therapy. We have the best Occupational Therapist (OT) in Melody, and the best Speech and Language Therapist (SLP) in Rachel.
We have the BEST family support ever, Grandma and Grandpa C, Stacy's family, Kelly's family and many more extended family.
An incredible church family group, Pastor EvaLyn and many, many friends.
Our pediatrician, Dr. Kuperman and his nurse and the Partners in Pediatrics staff
And last, "the Autism Web Ring" of which is a blessing to be a part of. That is also how I discovered "AutismPodcast.org".

Thanks to everyone for your constant love and support!

Sometimes he forgets, but he ALWAYS knows :) (Journal # 14)

2006-03-30T01:19:00.000-06:00

I have noticed, over the last couple months, that Sam is forgetting bizarre things that he has always known. He doesn't always finish sentances, but he knows what he is saying, and he gives you that little cute look that pleads for a response. The other day he said to me, "I already.....outtide mom?" It would sound bizarre if you would have seen the scene :) I was rinsing some dishes at the sink when Sam came bounding up the steps yelling "I already....outtide (outside) mom?" Sometimes already means "ready" and sometimes it means "I already finished, or did that, etc..." What you didn't know, is that 30 minutes earlier, Sam asked to go outside in the snow. He had so many toys lined up in the basement, the thought of cleaning it at the end of the day exhausted me, so I told him he needed to pick up 4 things first then outside. (We have learned that he understands directions better when you say "first this, then that" type of directions.) Our district autism classes taught that to us. It really is effective with Sam. They get so focussed on what they want, that when you word it that way, he understands.

Well, after telling him to pick up four things, he quickly informed me, "No, you breat (break) my toys" meaning that would break his creation, of which he gets very upset over. I proceeded to tell him "no outside then". He stomped down the steps like a typical 4 year old. When I peeked at him a little later, he was busy arranging his toys, carefully lining them up and placing them in their perfect spots. I went back upstairs without him noticing me to finish my tasks.

Time progressed enough that I was sure he had forgotten about going outside. No sooner than I had thought that, was when I heard his little feet pound up the steps and proceeded with "I already......outtide mom?" This time he meant to say "I already cleaned up. Can I go outside now mom?"

Sometimes I wish he would complete his statements better, because I fear he is forgetting his speech, but in my heart I always know that he knows.

Another weird example, is that he forgets words he knows lately. One afternoon we were sitting at the kitchen table doing some therapy stuff together. We had a pencil and paper and were working of fine motor therapy from OT. He scrunched his face, made a fist and proceeded to slam it on the table, "MAMA!" he screamed. I said yes Sam? "MAMA!" What Sam? "What DIS talled?" he yelled as he pointed to the pencil. A pencil I told him. Immediately his face relaxed and his hand opened up and released all the tension. He smiled "Ya, pentil." "Mama, da pentil mated me mate bid, bid, bid superman buildin." (I will interpret if you missed it........the pencil made me make a big, big, big superman building.) He was so happy, but I was so sad that he forgot a simple word like pencil.

Daily he seems to forget something he already knows. Yes, he seems to be forgetting simple things, but what remains constant is that little determination and sparkle in his eye that confirms that he does know what he is talking about. He just needs time, patience and love......of which he will always have from us!

A glimpse of the future... (Journal #13)

2006-02-24T13:46:00.000-06:00

When you get the diagnosis of Autism in your family, it is a lot like when you get a new car. You know what I am talking about. You do all this research on your new purchase. You want an automobile that meets your needs, has your favorite color, all of your required, unique specs! Then the car comes home, and you notice there are other people driving a car like yours.

It is like that with Autism. Before, when I heard the word, I didn't know a lot about it, but I did know that I prayed I would never have a child with Autism ( I really did), and that it seemed like a death sentence to those who had it. Then Autism enters our life...and every time you hear or see the word Autism, whether it be in print, news, or in passing, you are drawn to it.

The weekend after Brent and I received the educational diagnosis, we went straight to Barnes and Noble and bought every book we could on Autism and read them. We stormed the internet, we couldn't get enough information.

A glimpse of the future...while doing all of this, the real lingering pang was that I didn't even care about the here and now with Sam, I wanted to know his future. All parents hope, dream and wonder what the future holds for their child. If they will marry, if they will be grandparents, if their child will be happy. Now, our focus changed......would he be able to live on his own if he wants to as an adult, will he have meaningful relationships with people in his life that he can share love and laughter with besides family, will he have a job/career that is fulfilling and makes him feel needed? We just want to know what his life will look like.

A glimpse of the future...we see it occasionally. We see children older than him at therapy each week, who look like they are functioning, learning, etc... I am so intrigued when I meet another family with Autism in their life, to see what their child looks like, and how does Sam compare.

A glimpse of the future...we find it occasionally. I constantly read blogs at autistics.org to understand the way they think. It is inspiring, interesting, and hopeful to understand Sam more and what he might be like.

A glimpse of the future...we can watch it occasionally. Sometime this year, the movie "Snow Cake" starring Sigourney Weaver will be released. It is about a mother who is Autistic. A chance to see a portrayal of an adult with Autism in the movies other than Rainman.

A glimpse of the future...we can witness it occasionally. Like yesterday, which is what inspired me to write today.
http://kare11.com/news/news_article.aspx?storyid=119488
Yesterday, when 17 year old, Jason McElwain, scored 20 points in the last 4 minutes of a high school basketball game. With 18 of those points coming from 3 point shots, and the other one had his foot on the line. He got his chance to shine, and he too has Autism. While I know nothing about his individual journey with Autism, I know everything about how that mom must feel!

A glimpse of the future...we can never take in too much of the word Autism. We can never see too much of it, like when you notice that new car of yours being driven by others too. Sam is our own unique 2002 model loaded with extras. His Autism is not the enemy in our home, it is our friend. It is our son. It is our hope, that he gets every opportunity to be who he wants to be in the future, and not what we want him to be!

Writer's Block (Journal #12)

2006-02-19T00:59:00.000-06:00

Wow! I am surprised if anyone checks back on this site. I haven't been inspired to write (while I am always, still inspired by Sam) in awhile. Everytime I start something, I am distracted, or just don't feel like putting it to words. Lazy, hmmmmm. Truly, I write just to get it out anyway, so maybe the fact that I haven't written for awhile means I am coping. Ya right :)

Actually, I have been busy figuring things out. Taking Sam to therapy for speech and OT two entire afternoons a week starts to wear on you. Okay, how does that relate to my topic sentence. Well.........I am trying to figure things out as I am overwhelmed by the parent autism connections I have. While Brent and I have great support through agencies like Minnesota Autism Society and the Osseo School District, it is at North Memorial Hospital's Rehabilitation waiting/observation room that I find support that can overwhelm me at times. I spend two days a week freaked out and trying to figure things out.

First of all, the staff at North are awesome to say the least. They love and work so well with Sam. What happens is, that you wait with the same group of parents every week all afternoon. Many are there for various reasons, but at the time we go, the majority are also parents of autistic children.

I am trying to figure things out, because sometimes I feel like I am not doing enough for Sam, but yet in my heart I feel we are. There are parents there I have grown very close to, but differ so much in views with Autism. There are those on the whole "mercury" rampage. Those who only do biomed. Those who swear by hours of ABA therapy (one of the most proven successful therapies for autism), and those who have successfully done the gluten/casing free diets (of which we saw NO change in Sam when we did), and last but not least is "doping" (my term, it's Olympic time you know) their children with every vitamin therapy there is, close to chelation as well.

I really don't believe it was the immunizations for Sam. I knew something was well different with him well before the first MMR immunization. Sometimes I still even blame myself, wondering how much tuna I ate, what I exposed him to in utero. I don't know. I will never know what caused his autism, but I do know I am making peace with the fact that he has it. It doesn't mean everything is "peachy keen", but it means we accept it, and Brent and I say okay, let's go forward, not backward.

Okay, so I could go into how it seems the Autism community is becoming divided on the biomed/accept not cure Autism debate. We, however are blessed and very pleased with our accepting of Autism and our own medical community. We have one of the best pediatricians in all the Twin Cities (truly, he has been voted one of the "top docs" the last 3 years). He is a pediatrician who has specialized with children with developmental disorders like Autism and other things like ADHD.

Dr. Kuperman has been there for us with frantic calls after hours, when we were first finding out about the possible Autism through our school district first, when they assessed him. He returns every call the same day. He takes time for Brent and I to come in alone to process and talk. He has referred us wherever needed with the autism, from speech/OT to a neurologist. We have covered all bases. He is so patient with Sam, even when he refuses to cooperate, when he forgets to use his words and screams instead, and when he is literally bouncing off his walls. We trust our medical community. We are getting things figured out. We are providing Sam with between 25-30 hours of therapy week including the speech and occupational therapy and the therapy he receives at school through early childhood special education. We give him lots of our home grown ABA therapy (which by the way, is not rocket science), lots of nurturing and most important, lots of love. We are figuring things out.

And........I guess my "writer's block" is gone. Look out!

"I'm not naughty, I'm Autistic" (Journal #11)

2005-11-30T22:01:00.000-06:00

While we will never make excuses for our parenting of Sam, it is true that a lot of his behavior looks naughty when he is having a hard day....when he is having what Brent and I call "An Autistic Day".

I am frequently reminded of what it looks like on many outings to the store, when I get those "glares":
- because he is tantruming because I won't let him walk, because he is a runner (runner awayer that is)
-because he is screaming and clawing my face because I won't stop the shopping cart so he can sit in the middle of an aisle and play with the carts wheels like he likes to do sometimes (forever, and I don't always have forever, although I could live at Target).
-because he is talking extremely loud saying the same sentence over and over again until he gets the response he wants from me.

Glares, yep, get them a lot. People are just rude. I get tired of them looking at me, like I can't control my child, or I have spoiled him and he always needs his own way.

We actually have a business card we have ready to give out at all times from the Autism Society of America. It reads simply this:

My child has a neurological disorder called Autism. He is not being naughty and we are not being bad parents for not reprimanding him. Children with Autism can often behave in an unpredictable manner because they find it hard to cope with many everyday situations. He is quite simply doing his best. Please be patient.
For more information about Autism please visit: www.autism-society.org

We are thankful we don't get those "glares" from family. They have been wonderful, supportive and so understanding. After coming off of family time at Thanksgiving, we really only had one big "melt down" as we call them. He appeared very "naughty" at the end. When Sam does things that appear to be intentional, like destroying his brother and cousins puzzles, it is that... intentional. However, what makes it different, is that it is intentional for reasons we don't know or always understand. For example, we do know that with Sam's SID (Sensory Integration Dysfunction, typical with Autism), that he likes to scream, he likes to be tackled by his brother, he likes the deep pressure. Therefore, many times he does mean things to his brother so he can scream...so his brother will tackle him out of anger. But, when it is interrupted by Brent or I picking up Sam (the only way to get him out of that behavior is to remove him from or redirect him from the situation), it takes his "plan, ritual, routine" that he wants to have happen and ruin it in his eyes. He will scream, hit, kick or whatever until he is tired. It does no good to talk to him when he is this angry, or to put him in time out. They don't understand time out.

What does work, is letting him have his melt down. Then, at a later date and time, creating a "social story" around what happened. Below is a web site that explains and gives good examples of what they are.
http://www.autism.org/stories.html
The only thing at this age is that social stories should be presented a little different. It is important to have the child be a part of you creating it and making pictures for the story, not just the words you read. (Thanks Lee Ann and Jenny for this advice and input).

Stacy, thank you so much for the compassion and love you showed when Sam had his "little outburst" at Thanksgiving. You asked exactly the right questions, which is what Brent and I are very open to, and want you all to do. Not only did you display true love and care, but you clearly asked what would be best in that situation if it happens again, and if everyone should leave the room. For that situation, it was just a matter of Brent removing him and restraining him until he was calm (sorry Kelly for Alexis getting knocked down by Brent coming through, but she would have gotten hurt worse by Sam throwing something again if he didn't take him right away), and a social story followed the next day at a time when he was very calm, and was also repeated. And Stacy, you were also very correct in that it is best if just one of us deal with him and give the directions, as the more people yelling, telling him what not to do or do, the more confusing it is for him. Also, if we yell or raise our voice, he does the same thing but it escalates even more.

Some things that we don't want family to always worry about or feel like you need to intervene (unless we are getting hurt), is that when he can't use his words correctly to make his request or point and he gets angry. For example, during Thanksgiving, there was a point that Sam was not getting understood and chose to hit me several times (just my legs). I was choosing to ignore him..... a) because it didn't hurt b) he is a little different than other kids in that if I were to have responded with "we don't hit", he will not care because he just has in his mind what he wants. If I respond to him hitting me, he is getting the attention from me that he wants so I will figure out what he is saying. He then uses me to communicate instead of himself. So, sometimes it is "wait time" and holding out that we are doing to see if he can figure it out. That is what we have always done, which we have been told, has probably helped in the great language he already has. So, when Brent and I are right there, witnessing the behavior, if we are not addressing it, there is a reason from experience that we aren't. The incident where he was hitting me, involved someone else telling him to stop, which in turn, solicited a response from Sam that was him screaming "no". He wanted me to talk to him (in his head). I wasn't responding, the other adult was, so he wasn't going to stop. He then started hitting more because he was mad. That same situation happens to me on a daily basis. When I tell him to stop, or to use friendly hands, 99% of the time it escalates. When I ignore it, it stops much more quickly and then he is calm and I can encourage him to use his words.

Below is an excerpt from another parent of an Autistic child who wrote a publication called "Living with Autism":

Over the years I have come to realize that most people do not know what autism is, yet they know what Down Syndrome is. Maybe this is because autistic children 'look' like everyone else. The thing is they aren't like everyone else. This is one of the things that makes bringing up an autistic child so hard: the lack of understanding, by others, of their condition.

'Research has found that parents and families of a child with Autism are under greater stress than those with Down Syndrome or who are physically or mentally handicapped.'

-Autism News, Sept 2002.

Quite often an autistic child, in the eyes of an uninformed person, would be seen as naughty and out of control. The fact is these children don't know how to be 'naughty.' They cannot use their brain to manipulate a plan to misbehave. What they are seeing is a child who has a complete fear of the world. They don't understand the world as we would. They don't understand that if they cross the road without looking they could be run over.

Autistic children have to be taught EVERYTHING. Nothing comes naturally to an autistic child. 'It is important that everyone - parents, extended family, teachers and friends - understand that children and adults with autism are not like average people. The do not think in the same way and they should not be 'treated' like everyone else.' -Dr. Richard Eisenmajer (psychologist)

So.........even though Sam will look naughty sometimes or many times, how we will handle it may be a little different than when Zach or others are naughty. If Sam does something mean to one of his cousins, please remember that if we don't consequence him in front of you or in a way that you felt was properly compensated, please don't think that we didn't care or didn't think it deserved a consequence. Just know that we feel just as bad about what he did, but what we do with Sam may reflect it a little differently.

While I would never put one of these pins on Sam, people actually make these for parents because of the way their child looks and behaves in public:

I think Brent and I will stick with the cards. We love you all and thank you so much for being understanding, for not being afraid to ask us questions, for not acting like he isn't Autistic, he is, and he will have to be treated differently, and you have exemplified that.....................and for not being judgmental. We love you all.

Reality hits....hmmmmmm....... (Journal #10)

2005-11-14T18:39:00.000-06:00

So, for me personally, I believe that Sam is very intelligent and very much a three year old (almost 4). But, this past week has been somewhat of an eye opener for me.

The first reality hits...............sometimes people say the darndest things. I had a friend recently drill me about the preschool program that Sam is in. As I have shared in earlier journals that Sam is in early childhood special education. He will receive services for as long as he needs. Because of his Autism, he receives services while in a preschool program in our district. The program is a wonderful program. The classroom is made up of 10 regular education preschoolers and 5 autistic children. The special education staff and regular education staff team together in such a way that you don't even know who is who.

My friend who was questioning me about the program kept saying through the conversation "So do these parents know that their kids are going to be in a class with Autistic kids? How do they "sell" that to the parents to pay and have their kids attend that class?" Now, first of all this wouldn't have been so offensive, except for the following..... a) this was a good friend asking me this b) she kept on asking several times, as if so concerned as to the rights of the "regular" education parents knowing c) came across as if she would never put her kids in a program like that. I don't understand why parents don't want their children to learn about different abilities, different ethnicity, different physical structures. To protect our children too much is to unprotect society and all we are. The more we understand our differences the more we will see how we are truly the same "human spirit".

Hmmmmmmmmm........ this really bothered me after I left her. I kept playing the conversation over and over in my head, and also remembering her body language. My answer to her was that they didn't need to know, she in return could not believe it. Hasn't our world come farther than this? As a teacher and understanding inclusion, mainstreaming, etc.... all children have a right to learn to their fullest potential in an environment conducive to their needs. I CAN tell you that Sam will learn to his fullest potential by practicing, learning in a classroom environment, rather than in one-on-one ABA therapy as many parents of Autistic children prefer. His chances of being in a mainstream kindergarten with assistance are much greater than if he did not have this opportunity.

I then started to get myself even more angry as I pondered our conversation. Are not most people familiar with the ADA (American Disabilites Act)? Don't they understand confidentiality. The fact that my child is Autistic and in a preschool with hers or other children does not even need to be told to her essentially. Hmmmmmmmmmmmmm...............people make me think. And...reality reminds me just who real friends are.

The second reality hits.........so, this past week I was afforded a couple opportunities (just by chance) to see Sam with other 3 year olds. I don't usually get to see this, as I don't have any other friends with kids his age right now. It was somewhat sombering for me. I really do believe he is so smart. Besides some of his fine motor, balance issues, and speech, he seems so 3 to me. But then I saw "other" 3 year olds. The way they talk, move, respond to their environment. I must say it was the first time in a very long time I saw a difference, and understood that he was different. Hmmmmmmmmmmmm.........

The door....and Autism 101 (Journal #9)

2005-10-28T08:57:00.000-05:00

Sam forever enjoys kicking his bedroom door when it is closed sometimes. We are just waiting for it to break down. When he kicks, he lays on the floor vertical to it and just kicks forever. We have since, started to learn more about that and many other things he does.

Our school district encourages all parents of Autistic children to attend classes every Monday night for half a school year. They call the classes "Autism 101". They are really great classes. It is giving Brent and I a chance to connect with a few other families. The district has 22,000 students in it, and there are over 100 students with Autism.

So far the experience has been wonderful. Of course, Brent is the star student, always asking those questions no one knows how to ask, and of course offering up some theories that make the speakers agree. He is such a suck up. :) I love that so much. He just cracks me up. The neat thing about all of this, is that we are both acting as students in this whole process. Wanting to learn and be educated as much as possible.

The last sessions have been on behavior and discipline. Sometimes we have a hard time knowing how to discipline and what to do if we need to punish Sam. He is so happy and bubbly sometimes, that he puts on that smile after doing something naughty. Or he often laughs when and while he is doing something. What is crucial for us to remember (even if it is making us mad that he is laughing, etc..) is that he can not process or filter even the right emotion too. He may be very angry while he is hitting, kicking or running away, but it may be presented as laughter. In the past we would discipline him by putting in time out (which he never sits or stays). It is so different than Zachary. Even though Zachary too, is very strong willed. We have since learned from the psychologists and specialist that work with us, that time out is not appropriate for Sam (will explain later).

Here are the things we have learned so far at "Autism 101". We have learned that discipline is very different for Autistic children. They don't understand consequences. That really helps us understand a lot of our frustrations with Sam up to this point. They may be able to look like they understand, they may be able to repeat what you tell them, but with Sam the behaviors continue to return. Consequences are a huge no with him, we are told.

So what do you do? With the hope of not boring, but helping to understand Sam, here are the things to do when disciplining...

Determine what behaviors are a problem, and only address those behaviors with Autistic children. Behaviors must fall into one of the categories below:
1. Is it dangerous to self or others?
2. Is it causing property damage?
3. Does it interfere with learning (self or others)?
4. Is it annoying or disruptive?
If it is not effecting any of those categories, then don't address it.

T-E-A-S-E: An acronym to remember why these behaviors occur with Autistic children.
T- is for Tangibles. To get food, obtain activities, get toys, or protect personal space.
E- is for Escape/Avoidance. Difficult tasks (bath time, hair cuts, picking up toys), Change in routine, Interruption in a desired activity, avoid hugs, affection, or attention.
A- is for Attention. Obtain hugs, Parent Attention, Interactions from others.
S- is for Sensory (Self reinforcement or stimulation). Obtain sensory input, rocking, head banging, hand flapping, spinning somersaults, finger flicking, leg banging.
E- End of reasons. Meaning, once you find out the reason or function of the behavior, it can bring an end to it, or an end to your concern for it.

10 Strategies to Respond to Challenging Behavior with Autistic children.
1. Communicative Replacement - A strategy that teaches a communicative response in place of a problem behavior. An attempt must be made to make the problem less effective in achieving the desired outcome (toy, activity, etc.). The first component is achieved with communication training and the second is achieved by not allowing the misbehavior to have an effect on the environment or demand. These two components must be applied simultaneously to be successful. (In lay terms: simply by showing what the child should do in that situation, role play, act out.)
2. Structuring the environment - Set up and organize the home. Boundaries help establish expectations for the environment. Assign seats in the car, at the dinner table, in front of the TV.
3. Visual Schedule - Use of objects, pictures, written words to inform a child of activities that will occur. Examples- trip to dentist, bath time, starting a new school or routine.
4. Collaboration - The reponsibilities of a task are divided between parent and child. When using collaboration, the parent shares responsibility for task completion with the child. The purpose of collaboration is to increase the probability of task completions and permit earlier completion while delivering (positive) attentions during engagement.
5. Tolerance for Delay - A strategy that helps children maintain participation in an undesirable activity for increasing lengths of time or waiting for a desirable activity for increasing lengths of time. Example- Eat two more bites, then you can go outside. Keep cleaning, put two more toys away then you can watch TV.
6. Prespecified Reinforcer (nice word for bribery, it's OKAY to do with Autistic kids!!!) -A strategy in which the child is told or shown what reinforcer will be received when task is completed. The exact work requirement is specified as well as the exact reinforcer to follow. Use statements like: "If_______, then______." or "First______, then_____."
7. Preferred Item as a Distracter -A strategy presenting a highly desired item (toy, food, activity) to a child during a difficult or disliked activity before challenging behavior occurs. The preferred item is intended to distract the child from conditions that provoke challenging behaviors.
8. Warning before a Transition (3 step warning) -Before a child is expected to end and activity and transition to another, the child is given several visual and/or verbal warnings.
9. Choice Making -A child is given a choice of 2 options. A child can make choices between desired alternatives as well as less desired alternatives (pick up blue blocks or red blocks). Choice making offers control that they need for security.
10. Desensitization -A strategy used to lessen or diminish sensitivity to situations or sensory input that are difficult for a child. It is making sure a child has gradual exposure to a situation. Desensitization can be used when a child's behavior is to escape or avoid a particular activity or when a child obsesses on an activity or item.

Simple Guidelines to Follow.
1. Try to determine the function of the behavior.
2. Look at what is reinforcing the behavior.
3. Pick a strategy that addresses the purpose of the behavior.
4. Teach a Communicative Replacement. Almost always the best idea!
5. Sensory behaviors are the hardest behaviors to address.

Avoid Yelling or Confrontation
Why? Children with Autism have a hard time understanding nonverbal-communication such as: eye gaze, facial expressions, voice tone, gestures.

Stop Talking when things get bad
Why? Because children with Autism do not understand spoken language very well. Adults tend to increase their talking when behaviors escalate.
Being silent gives the student a better chance to focus, calm down, and decrease the probability of someone getting hurt.

Distract and Redirect
Children with Autism do not understand cause and effect. Distracting a child from engaging in a negative behavior and then redirecting to a more appropriate behavior (with physical and verbal cures) is more constructive. Once the child is engaged in a positive behavior, praise them. Threatening or giving negative consequences have little meaning or purpose to them.

Back to the door..............while it is annoying and can cause property damage (on the behavior check list), we have been able to determine that it is a sensory need for Sam. He loves the sound, he feels good from the pressure and rhythm.

(These are all notes from Brent and I taken from our districts Autism Team.)

From our resources at Fraser, a wonderful place that our doctors and others call the goldmine of Autism in the midwest, we have also been educated on time out with Sam.

They told us that Sam will not understand Time Out like most children. That for us to use time outs, should be to help Zach. We will have to discipline the two of them differently. However, Dr. Pederson told us, that we should occasionally (when Zach is around) use Time Out to show Zach we are giving him consequences for his behavior, even though Sam will not understand it the same. That is going to be one of our biggest challenges, parenting them, disciplining them, which will have differences. What won't be different is how much we love them both!

2005-10-15T19:53:00.000-05:00

Sam and Me