Shout Out for B!

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

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)

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

...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)

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)

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!

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

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)

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

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!

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.)

Answers not needed for Shalom (Journal #56)

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

To Katherine McCarron (Journal #23)

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