My last post was titled What is Autism. My message was mostly about the statistics to help those whom don’t know very much about autism as well as for those with new diagnosis. If I were to write it again today I would add more, a lot more!!
Recently Autism Speaks went to Washington D.C. to call for a national autism plan. I agree with this topic, there needs to be a national plan. There needs to be more funding for therapies, there needs to be more recognition and more awareness. Suzanne Wright, a co-founder for Autism Speaks, wrote a letter titled a call to action . If you have time, I encourage you to take a minute to read it. For me, her letter is a bit unsettling.
The Autism community isn’t happy about this letter. Frankly, they are outraged! Outraged with the fact that the only voice that was heard was the voice of a grandmother (Suzanne Wright) and not the voice of an autistic child, adolescent or adult. Some of her words: “living in despair; fear of the future; exhausted, broken parents; lost, helpless, burdensome children; a national emergency”. My thought is parenting any child typical or not leaves you with moments of despair, exhaustion and at times the feeling of helplessness. She paints a pretty scary picture of what autism is and although it is scary and hard it is SO MUCH MORE! Autism does not mean the child is doomed, autism does not mean that there is no hope and autism does not hold all the cards for many of these words.
When I first learned that Jake was on the autism spectrum it was scary, I didn’t know what to do, I didn’t know where to turn, and for a long time I thought perhaps Jake might be misdiagnosed. Jake didn’t fit the picture of the one I had in my head of what an autistic child should be or look like. Jake smiled all of the time (still does), through my reading I was told Jake wouldn’t smile much, I read that there would be no hugs, there wouldn’t be much laughter nor would there be any empathy. Jake is all of these. A lot of what I read didn’t match my boy. When you go to the websites to find out all you can about autism they tell you the negative side of autism and you have to dig and search to find articles about the positive side of Autism. After reading more I realized that Jake was not misdiagnosed, I realized there was more to Autism than the fact that Jake lines up his toys, walks on his tip toes or spins continuously.
There is more to Jake than his label. If I were brand new to the spectrum, her letter would scare me, her letter would lead me to believe there is no hope for my child. Seriously, I would think he was doomed. But the community spoke up about what autism really is…check out some of these posts by autistic children, autistic adolescents, autistic adults as well as parents like myself.
Autism is SO much more than statistics and numbers. This is Autism:
smiles and giggles
hugs, kisses and tickles
incredibly smart, always trying to figure out the problem
quiet, hiding under a blanket
reading the same stories over and over
running, crashing, jumping, spinning
lots and lots of cuddles
Jake will always have struggles but I believe these struggles will help mold him into a strong individual. Jake will have to work hard for each and every thing he wants; this will make him determined. Many things will not come easy to Jake and he will have to push himself to figure it out; this will make him a fighter. Jake is full of smiles and his heart if full of love; this will lead to compassion.
As I’ve said before ~
Autism WILL not define Jake. Jake will define who he is and who he wants to be!