Monday, September 27, 2010

Act Typical and Get out of Jail Free

People think my biggest challenge is dealing with Nicky's behaviors and coping as I try to meet his needs 24/7, but it’s not so, at least not for me. Nicky is wonderful, he's a great kid, full of potential who brings something special to everyday. Just as with his sister, I am happy to be his mom and take care of him. When people listen to me they are surprised to learn that the hardest part is existing in a world that for the most part doesn’t want him, doesn’t value him and isn’t ready for him, anywhere or anyplace. Not the schools, kids, doctors, dentists, teachers, hospitals, government, social services, first responders, adults, transportation, housing....all not ready and many not welcoming.

I feel like I throw Nicky and I under the bus everyday when we head out into the world, as I wait for the next punch. I have imagined that isolation would be a relief. Maybe it would it be easier to stop fighting the world, live our lives where it’s safe, stay in our DD community, stay home; but I can't. Autism doesn’t give us that option. 

I want Nicky to be part of our community. I want him to reach his potential for independence.  He can’t do that unless I put him in the community with "normal" people he can watch, observe and learn from. I know they don’t want us around, we make them uncomfortable but it’s his only hope at overcoming or reducing his social deficits. It is also societies only chance to learn how to do better. Watching “typicals” he learns he can’t jump, flap, stick his tongue out, hit, make noises, take food off of people plates, push his ear on people’s stomachs, or refuse to respond when people talk to him. Learning what normal looks like and how to act as typical as possible in society is his ticket to freedom. It is literally his stay alive, stay out of jail, isolation or institution card.

So as tempting as isolation may seem, it’s not an option!!! And as difficult as it may be to see us, we're here! In fact with 1 in 80 boys on the ASD spectrum, we might be everywhere. That said, if you can't beat em, join em. When you see us at Starbucks or in the grocery store remember how much we need you. Disregard the flapping, jumping, funny noises or whatever our kids might be doing and say “hello”.  It would mean so much. 

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