Wednesday, September 19, 2007

Recalling things...(Journal#80)

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)

Wednesday, September 05, 2007

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

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

Monday, August 20, 2007

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

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

Thursday, August 02, 2007

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

(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 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.

Monday, June 25, 2007

On the inside...(Journal#76)

...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. 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.

Friday, June 22, 2007

Out our own front door...(Journal#75) 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 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 a world we pray will keep all of our children safe.

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

Wednesday, June 20, 2007

Prayers for Benjy's family (Journal#74)

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.


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)

Monday, June 18, 2007

Prayers for Benjy (Journal#73)

(The following is from

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.

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)

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!

Saturday, June 09, 2007

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

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 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?"

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."


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!!!!!

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)

Wednesday, May 30, 2007

Down Time...(Journal#70)

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

Saturday, May 12, 2007

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

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.

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.

Psa. 113:3

Monday, April 30, 2007

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

Blogging Against Disablism Day, May 1st 2007
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. 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. 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."

Thursday, April 26, 2007

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

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

Saturday, April 14, 2007

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

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!

Thursday, April 05, 2007

Oprah's Show on Autism (Journal #64)

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.)

Wednesday, April 04, 2007

Tomorrow on Oprah (Journal #63)

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 let's just hope that they show our kiddos not being "so horrible" but beautiful! Dang!

Saturday, March 31, 2007

Martian Child and Autism Acceptance (Journal #62)

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 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 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.

Sunday, March 25, 2007

Rated S.O. (Journal # 61)

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. 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)

Wednesday, March 21, 2007

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

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

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)

Tuesday, March 13, 2007

The Candle (Journal #59)

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.

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

Thursday, March 08, 2007

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

...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

Wednesday, February 28, 2007

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

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