World Autism Awareness

1 in 110
I wish those were my odds to win the lottery...I can't see that statistic now and not know the significant meaning behind it. 1 in 110 children are on the autism spectrum. Last Sunday's Parade Magazine featured the headline: "Autism's Lost Generation". It's sobering, haunting, and depressing to consider what's been lost to autism. I generally try to find the good in it; see the positive side of the hand dealt to my son. The joy he often has in his heart is genuine, pure. So, in honor of autism awareness, this is what I want you to know about autism (and my son):

*Autism robs my son of the ability to express his ideas and emotions clearly; but that doesn't mean he doesn't hear or comprehend.

*Without words, my son speaks clearly to those who are open to his world.

*Though socially challenged, he wants friends and yearns to belong as much as any other kid his age.

*Extreme sounds, sights, smells and sensations can be overwhelming to him. He was probably 9 before he could tolerate a movie theatre; 11 before he could "enjoy" fireworks. He is able to work through his sensitivity to some things, but others will always be an issue.

*We take nothing for granted. Every part of our lives is pre-planned; there is always a back up plan.

*Autism is expensive, period. It just is.

*Jackson is intiutive; he can sense people who are "on his side" and steers clear of those who are not.

*We choose to have him participate with his peers as often as possible. Our motto is "set him up for success." We expose him to as much as possible and refuse to let autism limit his experiences.

*Understand that people with autism (especially children with autism) look normal. Looks can be deceiving.

*Jackson is a creature of habit. Routine is comforting to him; change triggers anxiety.

*We celebrate the little things: haircuts, bike rides, sunflower seeds, "joint attention".

*Never underestimate his ability to problem solve. This kid has spent 13 years figuring out how to communicate his needs. Ask yourself how you would communicate in China? Further imagine you didn't even know how to use non-verbal clues or gestures to communicate.

*Breakthroughs can come when we least expect them and he tends to progress in spurts. If he's struggling academically he may be making strides socially (and vice versa).

*Please, please know that we have tried many, many "cures". Diet, check. Sonrise, check. Speech therapy, check. VB, check. TEACCH, check. Vitamin therapy, check. The list continues. Chasing the "cure" is emotionally exhausting. We're doing everything in our power to improve his quality of life; we just no longer exhaust ourselves with every new therapy.

*We love him fiercely, in a raw and sometimes painful way. He loves us purely, the only way he knows how.

Inclusion & Ramblings...

I have been doing research on autism and inclusion--the pro's and con's if you will. There is so much information out there, and so many opinions. I honestly think one could make a strong case either way citing "experts". At the end of the day, I'm left trying to sort through it all and decide what is best for my son. I have to speak for him, unfortunately he doesn't have the words. Well, that's not true, actually he does say he wants to "stay with my friends"; he has no interest in a "new school".

Alas, next comes the unnerving thought, what else would he say if he could? Is he aware of his social plight? Does he wish for something different? Would he prefer to be educated with "similar" peers? How different would that look for him? How hard would it be? Would it be too easy? Would he miss his friends?

I am forced to face my greatest fear: REGRESSION. In the end, that is the great unknown; the black hole of my existence. What if he just stops moving forward? What if he ALWAYS loves Sesame Street stuffed animals? I think I can live with that...That is not the black hole--the dark place where regression lives is a place where he loses his place in my world and reverts into his own. Regression is a disconnect, a loss one does not easily recover from. Regression is the rug pulled out from underneath us, and the worst part is not knowing what may cause it. I think I have a clue about some things that might cause a regression: a huge change in routine, setting or schedule could send a typcial person over the edge. Jackson isn't at all typical. Take him away from everything and everyone he knows and it's like a "perfect regression storm".

REALITY is now. Reality is, "Mom, come here" and "Cal jump with me" or "Hey dad". Reality is the notes he writes us in church asking to go to "Toysrs" or to tell dad to draw "big brd o hrd" [big bird goes on a hayride]. This reality isn't one I could have hoped for even 3 years ago. I try to remind myself of that as I ponder the next 3 years. How much will he change and grow? What does HE want for his future? How capable is any 13 year old of explicit future planning? Most of them I know are vague at best regarding future plans: I want to go to college, I want to make a lot of money, I want to drive a nice car. Jackson wants to go to "mickey mouse's house". [I am smiling as I type that one].

At the end of the day, I put my head on my pillow and pray. Pray that God will guide me to His awesome plan for my son's life. Pray that I will see His hand in it all; pray for insight and peace. Pray for a sense of direction and to listen to His will, and the strength to accept it.

Reflecting

I am thinking about Jackson's upcoming annual case conference. (For those of you with typical children who are deprived this privilege, a case conference is when you meet with teachers and administrators to plan for your child's education for the upcoming school year). I always get a little anxious about these meetings; like I'm waiting for the ax to fall. It's not easy hearing how academically challenged your child is; it's especially difficult to read it in black and white.
So, this year, I am preempting those feelings with my own list of all the gains my son has made this year. I will need these accomplishments to temper the weight of the world as I contemplate how far he has to go. With that, in no particular order, are the accomplishments he has managed since the fall:

*He is making attempts to read words. There is evidence that he is checking through words and using phonics to sound out unknown words.
*He has an increased interested in art. He will draw illustrations and talk about what he's drawn. His drawings are becoming more sophisticated.
*Jackson is using print in a meaningful way. He has intentionally written me notes to make his point even greater. He will record things on the calendar and has even at times, added words to his illustrations.
*Finally, my son is able to match one to one when counting. This skills is helping him to have an understanding of other basic math concepts: addition, more, less.
*Socially, he continues to laugh in the face of the autism gods. In the fall, at a sectional football game, he wandered off from our family, and when I caught up to him and asked him where he was going, he answered, "to my friends". My heart stopped then, as I watched him and his friends "hang out" at the game for the rest of that quarter. At the next sectional game, he asked again to go find his friends.
*This year, he went on a big birthday party celebration and actually rode all night long in the limo without mom. He was calm, and enjoyed being with his friends.
*That initial excursion led to another independent event: going to the circus with a group of friends.
*He routinely greets his friends and their parents at church (with out prompting). He is ever aware of where his friends are.
*He clearly demonstrated his awareness of the wants of others when changing the music in the car to something his friends would enjoy.
*He asks about going to do things with his friends, and will talk about times he's shared with his friends, "You went to Lazer tag with Jhai and Trevor and Seth"
*He initiates activites with family members. He'll call, "Cal come here" or "Mom sit here."
*Jackson follows directives easily. This is exciting, there was a time when he didn't understand a simple command like: "Put the plate in the sink" Now he can follow more complex commands "Take the clothes out of the washer, put them in the dryer and press start." or "Go to the kitchen and get mom a coke"
*He's more vocal in general. I'm often greeted with a "Hey mom" and surprised when he asks about or announces something.
*Amazingly, he has adapted to having seven periods in the day, and adjusted to seven teachers. I record this, because it too, is an accomplishment in its own right.

These are the accomplishments that come to me right now. Absolutely to be celebrated, without question they aren't taken for granted. I am proud of all my son has become and anxious for his future to unfold more triumphs.

Reading!

There are some things we've decided not to focus on with Jackson. For example, learning to tie his shoes. I mean, we figured, plenty of grown men wear shoes that do not need tying, right? I've even been known to say, "Even if Jackson can't read, he has to be able to communicate with others." I do think it's so important for him to know how to read, it's just been something beyond him. Until now.

Last night, Dan came in after bed time with a sparkle in his eye saying, he is reading, really reading. Evidently, Jackson would go back and check through words Dan would call his attention to, and was really looking at the words and reading the Calliou books at bedtime.

There are times, I again reflect on the puzzle the metaphorically represents his life. So many people have a part of the person he is today. Each one represents a piece of the puzzle coming together. The preschool teachers who helped him understand his role in school; Mr. Kempton, the principal with a vision for kids like Jax. Mrs. Markley, for lovingly, gently encouraging Jax. Mrs. Schubert for stretching him outside his comfort zone. The coaches, who helped him feel like part of a team. The kids who have grown up with and around him, supporting him, including him; these kids showing him the way. Our family members and friends who love and support him and us.

"Jackson is reading!" I really want to shout it from the tops of the mountains, I want the world to know. Just like so many other things with Jack, this skill came along quietly in its own time...it's just another ordinary miracle. God truly does amazing things!

"Irritating"

We have blessed by the people who have helped care for Jackson while Dan & I are at work. Starting with his first sitter, "Nana Lesley" who cared for him as an infant (and we were ever SO grateful she did) to our current caregiver Miss Robin and those in between, Jackson and Callahan have both been cared for by devoted, loving people and I will forever be grateful for each of them.

Recently, during a snow day while at Miss Robin's house, Jackson, in typical Jackson form, was obsessed with going to Wal-Mart for a coveted Mario toy. I had promised him, "First Miss Robin's, then we'll go to Wal-Mart". When he's "stuck" on something like this, he needs to be constantly reassured that, indeed, the plan is to go to Wal-Mart for the promised toy. God bless Miss Robin who reassured him more than once of the plan. As the day wore on, his anxiety increased and he went to her and said, "You go to Wal-Mart" to which she responded, "Your mom will take you to Wal-Mart". Of course, he went through this ritual with her multiple times through-out the day, waiting for me to get there and take him to the store.

At some point, Robin's own mom stopped over and while she was talking to Robin in the kitchen, Jackson came in and started his litany. "Your mom will take you to Wal-Mart". God bless her, Robin's mom thought he was talking to her, and she said, "I'm not taking you to Wal-Mart Jackson!" To which Jackson turned, walked out of the kitchen and announced:
"You guys are so irritating"
How Robin managed to suppress her laugh and use it as a teachable moment, I will never know. She called him into the kitchen and told him she loved him and wasn't trying to irritate him.

My reaction: I cannot believe my son used such incredible vocabulary to identify his emotions and then, it was, "Where did he hear the use of that word?" Dan & I both felt a bit guilty wondering if that expression had come from either of us...the mystery was solved the next morning when "Martha Speaks" came on and the dog announced "you are so irritating". I'm really proud of Jackson's ability to internalize and transfer the use of that word. And, I'm forever grateful to my dear friend who managed to use the moment as a teachable one!

birthdays, holidays and notes to mom

December has been a whirlwind of shopping, cooking, wrapping, visiting and celebrating. It's been a busy month and now I have a minute to reflect on how Jackson has handled the holiday bustle.

I was thrilled and nervous when he was invited to a special birthday party. The kids were going to ride in a super stretch limo to the movies and then to see the holiday lights at Franke Park. I didn't think he would want to ride in the car without me. Even when he attends youth events he won't ride in the church van without Dan or I. So, I was skeptical and anxious (maybe feeling a bit like he often does). I wrote a social story about the party and hoped that it would ease his anxiety. I'm so happy to report that he did just fine. He had a great time riding around in the "big car" with the kids. He was so excited that during the school day he almost ruined the surprise when he asked a friend in choir "You ride in the big car after school?" Words cannot express how relieved and proud I felt. It was one more step towards independence. One more piece of "normal" returned. Just having him included in the party is such a gift.

He handled our family Christmas marathon like a trooper. For us, Christmas started on the 19th and didn't end until the 26th. He's much better able to self-regulate in noisy crowded situations. This year, he had a litany of gifts he wanted for Christmas: Abominable snow monster, spotted elephant, charlie-in-the-box and dolly from the misfit toys, a big Charlie brown, a big Snoopy and a big Rudolph. Honestly, we worried because even though he was getting everything on his list, he wasn't getting them all at once. We held our breath Christmas morning, hoping he wouldn't have a meltdown over missing a few of the coveted items. Again, he surprised us with his patience and resilience. The only disappointment was that he doesn't get overly excited when he's happy. It's almost a letdown. He opens it like he knew it was coming. In the end, I'll take that.

Today I am taking him for the meningitis vaccine. I'm so not looking forward to it. Earlier as I was otherwise pre-occupied he brings me this note he as written: "Toksin Ts" and announces "Go to tokens and tickets." The note took my breath away. It's the first time he's used writing to make a point. His teacher will be happy to know all her efforts in written expression are paying off. He's beginning to understand the power of print. I'm blessed by this kid, who keeps me guessing and is full of love.

before autism...

I was cleaning out old pictures today and came across one of my favorites of my niece Cora and Jackson when she was almost 3 and he was almost 2. They are dressed in matching outfits and look more like siblings than cousins. It is precious beyond words.

Funny how a picture can freeze a moment in time; be so joyful and sad at the same time. I think that picture probably best represents life before autism.
It's hard to think about and sometimes hard to remember what life was like then. Jackson's life was this partially written canvas waiting to be filled, with hopes and dreams and so many, many possibilities. Certainly, before autism, I never imagined autism being a part of that picture. I remember praying fervently that he would grow into a man of faith. I remember feeling like he would do amazing, incredible things with his life. I suppose that's the way all first time parent are: full of anticipation and hope. Our lives before autism were filled with joy in all that he did, we were amazed by who he was and intrigued with the possibilities of who he would become.

It strikes me just now how different it was when Cal was a baby. I was so consumed with fear of autism that I didn't spend much time hoping, dreaming, imagining possibilities (I probably make up for that shortcoming now, dreaming big for and with him).

I work hard on seeing the glass half full. So much of Jackson's purpose and message in life is the work of God. Sometimes I just want him to be not so much what he is. I suppose there are qualities in all kids parents would like to leave out. Even as I type this, I feel guilt for these emotions. I don't know who Jax would be without autism. I rarely indulge that line of thought. Instead I try to focus on all the things I wouldn't have without autism. I try to consider how it makes me a better person.

In the end there is a definite mark in my life timeline:
before autism
after diagnosis
It seems like there should be like a vast chasm between the two. Instead, it's a blink of the eye; a turn of the page. It's a sunset and sunrise all in one fell swoop.