Saturday, April 2, 2011

Life is About More than Writing

I'm wearing blue today.

Today is World Autism Day and my grandson is autistic.

Now you know why there is an autism banner on my blog, stuck between writing banners and pictures. While this topic doesn't have much to do with writing, it has everything to do with life and real life is the fuel that shapes stories.

I could quote statistics and review research and make this a purely informative piece. I won't. Instead, I will get down and personal and tell you how immense the challenges are for us as a family to help this happy, active, smart child. Here's how we'll start:

1. Visit Autism Speaks and learn. That child you see that is melting down in the grocery store and you think he/she is a bad kid and his parents need to get control? That child may be autistic and at the edge of what he can cope with. You see autistic kids have problems processing the information that is coming at them from their nervous systems and when they overload, the results aren't pretty. Stop and consider that next time before you judge. Is the child possibly just having a temper tantrum? Yes. But with 1 in 110 kids having autism, statistically speaking chances are high that this kid has overloaded on the sights, smells, sounds - all the sensory input you take for granted - and can't handle the overwhelming flow anymore. That manifests itself in crying jags, in running uncontrollably, in needing to move, in not being able to listen and follow instructions, in not having any self-control. It can also cause them to crawl into a dark space to STOP all the sensations flying at them -- hence, you will see my grandson crawl under the table in restaurants and sit there. Yes, I know the floor may be dirty. You don't need to tell me. Am I weighing that against what his body is telling him he needs? You betcha.

There are as many variations of this as there are autistic children. And yet, life goes on. Shoes, groceries, dog food must be bought, and sometimes life doesn't conveniently allow us to leave them at home. In fact, isolating them instead of using/teaching documented strategies for helping them cope is a mistake. So we take them and deal with it, even in the face of your criticism.

2. God doesn't ask us to be normal. He asks us to live up to our potential. Don't ask me if I wish I had a 'normal' grandson. I don't. I wish for Zachary exactly the way he is. Because this is an awesome child. He laughs, he cries, he loves. When he grabs my hand to pull me out to the yard and show me a bug, my world is brighter. When he catapults next to me in bed and hands me the remote for an umteenth viewing of Mickey, that's special. When he looks me right in the eye and kisses me, that's PRICELESS. This child got up this morning, got a bowl, got an egg from the refrigerator and cracked it into the bowl with very few shells, and threw the remnants in the sink on the garbage disposal side. He then got the milk and the bread and came and got me to make him French toast. He may not have been able to tell me what he wanted, but he's compensated for that inability by SHOWING me what he wanted. How many three-year-olds even know what goes into making French toast? Mine does.

3. The first step after this diagnosis was to educate myself. I've read until my eyes bled and my brain is full of so many facts and strategies I can't sort it all out. Would you take a moment and educate yourself, too? Go to The Center For Disease Control and their page on Autism. Read. Learn one fact about autism. Because it all helps. Then next time you see a pink ribbon on a bumper, or a group of cancer survivors wearing red, or a grandma in the grocery store wearing blue, you'll remember that these aren't just causes. These are real people FIGHTING.

It's up to us as a family to shape Zach's future and nothing less than giving him the strategies to be successful will do. It means exploring all the research, reading the thousands of articles and books, and talking to professionals over and over and over. Because as the child learns and grows, the problems shift and change. It means putting aside writing time to play. It means priorities must be shifted so duties can be shared, so therapies can stay number one, and it means sometimes blog posts don't get written. That's okay.

I've learned alot about commitment in the last three years. I've struggled to connect with this child, to draw him into our world. I remember the first moment I realized he might be autistic and still cry at the memory. I've grieved for his future and then I found my mad. Because his kind of smarts shouldn't be contained by a disease and it is my resolve to help him. Consequently, I've learned alot about myself and what I'm willing to do just because I love.

So I hope you'll join me today! Visit Light It Up Blue and wear your best blue shirt because understanding autism is that important. Our thanks - from Patti, from Anne (Zach's mommy), and from Zach.

1 comment:

Mark Fredericksen said...

Thanks Patti for placing a very warm personal perspective on what is way too often a label or cold clinical diagnosis. You're a GREAT grandma - great as in fantastic, not as in geneology - LOL!!