Ice Cream Run

       Ever had a memory leap out of your heart and roll down your cheeks? Tonight, I made a memory that sometime in the future will do just that.

     It's summertime, baseball season, a hectic time with  full schedule that is loosely knit.  It's a go with the flow, spur of the moment time of the year.  Tonight some good friends came over to deliver some furniture. (Yay me!)  The kids decided an ice cream run would be fun.  I didn't get to see them all hop in the car.  I didn't hear Parker offer to let Jackson ride in the front seat.  I didn't even see them drive off down to street.  It happened so fast, all of a sudden I missed it.

     We moms met the cool kids minutes later at the Magic Wand.  Everyone had some form of ice cream and we all enjoyed this summer ritual.  When we finished, the kids got up.  Jackson paused, and said, "Jackson's gonna ride in Paige's Jeep."  Very matter of fact.  Then, he followed them all to the car.

     This could have happened with any number of kids.  It's a very normal thing.  Kids go for ice cream, kids ride off together, kids laugh and sing in the car.   Kids do it all the time, most of you take it for granted.

     There is so much that I do not take for granted.  So much that makes my heart ache.  Tonight, Jack sang in the jeep.  His brother and friend had the presence of mind to record him for me.  Tonight he did something so normal that for just a moment, I could forget his limits.  I could forget what holds him.  I could forget the heartache.

     I know, I know.  There is so much he can do, many ways he is blessed, and much to celebrate.  I plan to celebrate, maybe with some ice cream.

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.

Art

Jackson is working on the art badge/pin in Cub Scouts. It was one of the electives I knew he could do without a bunch of help from me. So far we've worked on a color wheel (using paint so he could see how the colors changed using primary colors), and a collage of sorts with cut-outs and stickers of things he likes and does. We also worked on a clay sculpture. The art teacher at school fired it for us. I brought it home and have asked him a few times if he wanted to paint it; "No" emphatically was the answer. Guess what Jackson decided to do this morning? Yep, use the poster paints to paint his fish. Actually, as it dries it looks more messy, but he was pretty deliberate about using different colors and definitely had a plan for how he wanted it to look.

Just once, for even a moment, I'd like to get into that head of his and 'hear' what he is really thinking...sometimes I wonder if he thinks like he talks, ya know? Because, I think like I talk. I hear my words in my head...can Jackson here complete thoughts or is it more random, like his words...hmmmmm....

Stuck

When Jackson gets an idea in his head about something, many times it's almost impossible to dissuade him. He's literally like a broken record (or a skipping CD in todays lingo).

Today, it's that he wants to go to the bookstore...Barnes and Noble actually. He wants to go and buy another Arthur and DW doll. Never mind the fact that he already has four of each. I think he's decided it's his life mission to hoard all the Arthur dolls in NE Indiana!

This, of course, as always comes back to something I did that backfired on me. When he started 4th grade we decided to discourage taking 'toys' to school. For Jackson, toys are a multitude of Sesame Street characters, Teletubbies, or Muppets Characters. Previously he took up to half a dozen such toys to school everyday in a cinch sack. We decided maybe 4th grade was the time to limit such a habit and replace it with a more age appropriate practice. This was the advent of Arthur. In all my infinite wisdom I decided Arthur was an age appropriate character he liked. So, I bought him an Arthur with a backpack at B & N and told him, that Arthur was going to 4th grade with him. We even took pictures of Arthur with him at school as he visited his classroom before school started.

So, we've graduated to taking 8 characters to school each day in the cinch sack (again) 4 Arthurs and 4 DW's . Each, of course, is carrying a backpack, ready for school.

Sometimes, I'd just love to get inside his head.....

In Your Face

Again.

I had out all the old paperwork from the beginning of this journey. Back then there were countless appointments and professionals all with different opinions, most afraid to say the 'a' word to us.

Came across the technical medical reports from the child neurologist we drove 2 hours each way to see. As a glance over the reports some of the words still jab at me like a knife:
"abnormal"
"dysfunctional"
"no response"
"delayed"
"damaged"
*Sigh* it's been, what? Six years and these words still take my breath from me. They echo in my mind and bounce off the walls reminding me of all the things my son is not. Making it difficult to focus on all the things he is...
tender
curious
gentle
hesitant
happy, yes, I think so
happy

So, why is it then, that these worn-out words on an old report strike out at me?

hmmmm
autism is a journey, not a joyride.

Is and Isn't

Jackson is:
gentle
innocent
funny
loving
happy
sometimes silly
resilient

Jackson isn't:
mean
talkative
athletic
artistic
mature

Just thinking of the things Jackson is and isn't. When I limit myself to one word to describe the things he isn't it just "feels" better. I sometimes get hung up on what he isn't...