Monday, April 2, 2012

Light It Up Blue! (World Autism Awareness Day)

Today is World Autism Awareness Day, a day that many locations and people across the world are showing their support by Lighting It Up Blue. In New York, the Stock Exchange is lit blue, in Brazil (see mom!) Christ the Redeemer in Rio de Janeiro, the Sydney Opera House in Australia and so many more! Autism is on the rise, with 1 in 88 children being diagnosed with some form of ASD (Autism Spectrum Disorder). The numbers are startling, it is time to make people aware, support the cause and make a change!

We haven't been part of the Autism community for very long. While kiddo had shown the signs of some sort of ASD for a long time, I wasn't able to get him really diagnosed until he was 8 years old. With so much negative stigma attached to Autism, no one wanted to believe that kiddo was Autistic. I was told that he certainly was not because he didn't rock back and forth and could speak well and he certainly wasn't retarded. (I only say "retarded" because jerks who don't know any better or are simply said- jerks, will use that term) For me, I knew that there was something different about my little boy, whether anyone else wanted to admit to it or not.

Kiddo was born at 25 weeks gestation (15 weeks early). While he did amazing for such a small preemie, once he started to grow, I knew that there were things that weren't quite right. He never utilized imaginary play and actually hated the play sets that you had to imagine it was something it was not like tools because they weren't functional but rather simply meant to entertain toddlers. Very early on he started to organize his toys, I would find lines of Match Box cars organized by make, model and color. By 18 months of age, he still wasn't speaking, the only words he could really communicate were "momma" and "dadda." When he would get frustrated as a result of not being able to tell us what he needed or wanted, he would turn to self injury, throwing his head up against anything close by including steel fence railing or light posts. When we went to the pediatrician for his check up the doctor pointed out that he wasn't really reach many of his goals, most of them centered around social skills like waving, pointing or showing, responding to smiles, word strings etc. I thought nothing of it, my kiddo had lived and survived after so much and he continued to struggle medically, I was not concerned about social skills.

As he grew older, the signs became much more apparent. His sensory issues and sensitivities increased and transitions to new events would set him off. The older he got, the more I knew that his reactions to things were less than typical, especially since I had his sister to, more or less, showing me what "typical" looked like.

When he was finally diagnosed with Asperger Syndrome in 2009, I didn't feel sad or afraid, I felt relief. I knew now that I could get him the help he needed to progress better in life because there was an answer. Since then we have adjusted his therapy in and out of school to accommodate his needs and in the last year he has just done amazingly.

And those Autism sterotypes? Well, kiddo is so smart he will knock your socks off. He rarely stims (repetitive body movements such as rock, arm flapping, etc. that people associate with Autism), but if he does we are in nuclear meltdown build up and it's time to escape. He has a great, if not slightly adult vocabulary and knows more about the natural world than I think I knew when I was in High School. He has a number of interest which he completely obsesses with such as Legos and dinosaurs. But kiddo doesn't look any different from you or me and he doesn't have a disease that you are going to catch. He is amazing and funny, sometimes even joking about things he doesn't understand like metaphors and idioms (ie. Mountains of Molehills, "mom what if a mole made a mountain... it would be pretty easy to cross!")

While I would never change kiddo and who he is, we must work to try to help find the cause for Autism. The spectrum of ability and function for these kids and adults is wide. It is not an easy life to go through and though I wouldn't change him, I know life would be easier for him if he didn't have Asperger's and really that is all a mother wants for her child. But as Temple Grandin said "I am different, not less." Help us spread the word and support the cause and Light It Up Blue today and continue to work towards a cure the rest of the year as well.

No comments:

Post a Comment