April is Autism Awareness Month... tomorrow is World Autism Awareness Day. What does this mean?
Blue light bulbs in outside of our house to Light It Up Blue- check.
Sign made & in the yard and sidewalk-chalked on the sidewalk about Light It Up Blue- check.
Wore blue today to show my support- check.
Now what?
When Sam helped me write with sidewalk chalk outside, he asked how he could help with Autism Awareness Month. He said "If Dad goes to a mall with a booth, can I go to and talk to people, or maybe sell something?" He's remembering the last few years when we had our information booth for Stephanie's Day to share AutismSpot. Sweet boy. He wants to help out, he wants to be a part of something, but does he know what it means?
We talked a little bit tonight about what is hard about autism. He said that it's hard when he has an attitude. It's hard when things are different than he expects them to be. It's hard when there are loud noises. I told him that there are some great things about his autism too- like his amazing memory and that he is musically inclined (I'm a great singer, right? he asked)... Then he ran back inside to watch the movie with Luke.
Sam doesn't know that his autism is a "disability". The older he gets, the more differences he is seeing. I know when he starts school at our neighborhood school in August, he will see even more differences. I hope that with our open dialogue and continued support he will see those differences as being many positives, not only negatives. Yes, so much about autism is hard and ugly and it stinks and I would never wish it upon anyone- never. I think back over the past 9 years and it is painful- sometimes I can't even let myself remember the details. Then I look at Sam now, size 8 1/2 shoe, asking how I'm feeling & what my favorite part of my day was, tickling his baby sister, and I can't believe this is the same child.
When I think of World Autism Awareness Day, I think it means that we celebrate the children that we have for who they are today- right now- and love them unconditionally. We don't judge the child at the store who is having a meltdown or the adult who is our checker that won't look us in the eye. We don't judge other parents in our autism community who medicate or who don't medicate or who do things differently than we do. We continue to push for better education, more insurance coverage for therapy, assistance & employment for adults and compassion for all people. We are grateful for our amazing therapists and teachers who dedicate their lives to our children who so desperately need someone to believe in them. Awareness is great- it's wonderful- but what we also need is acceptance. We need change. We need better research. We need to find a way to put a halt to this growing epidemic. 1 in 110 children diagnosed in this country is unacceptable; and the frightening thing is that these are outdated statistics.
I love being able to share my story with newly diagnosed moms and love listening to theirs and being there as a support to them. Just in the last few months, I've met with N, L, S, S, V, & A. One of the greatest things about autism is the incredible moms (and dads!) I've met- without this strong, genuine, compassionate support system, I don't know where we'd be. I love these moms with all of my heart and rely on them daily for information, research, and encouragement. I know Kent feels the same way. In fact, he is out right now smoking cigars with 2 of his incredible "autism dad" friends. Even though I hate that there are so many new moms just in the past few months, I feel honored to know them and I'm glad we have each other. No one understands this life until they walk in the our shoes. On World Autism Awareness Day, I'm grateful for this support system.
I think about autism every minute of every day. I love my son fiercely, and when I see him, I don't just see autism, I see a brave, strong, creative, unique, beautiful gift from God that I am honored to know and share life with.
World Autism Awareness Day. I long for the day that we don't need this day. Until then, we will continue educating, inspiring, & providing hope to the world with AutismSpot.com and celebrating our son for the amazing individual that he is.
Light It Up Blue!
