Saturday, April 2, 2011

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.

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