Tuesday, April 28, 2015

I Spy....Self-Advocacy

The other day Caden and his daddy were playing I Spy.  Caden said I spy something blue.  After looking around for a few minutes, his daddy told him I just don't see anything blue Caden.  What is it?  With a huge grin, Caden replied it's me daddy.  Now completely confused, his daddy asked what he was talking about.  Again with a huge grin, Caden replied you know autism, remember I have autism daddy.

Yea, I know I'm back to "that topic" again but that interaction means so much more to me than an organization.  First he recognized that the Light It Up Blue event that we went to earlier this month was for people like him who are on the spectrum.  We were lucky--we went to an event on a college campus that involved upbeat music, dancing, and felt like a celebration.  He danced and sang and danced some more.  In some ways, it probably felt like a party for him.  A party about autism.  Essentially a party for him.

Second he is starting to really see autism as a part of who he is.  I think that level of personal awareness and acceptance is a pretty big deal.  A few days ago, he was playing and a few boys came up to see his razer cart.  They started asking him if he knew about the ghosts that lived behind the building and he replied I don't like to talk about that because I have autism.  They asked what autism was and he told them to ask his daddy.  Later though he asked how he could explain autism.  I am still searching for an explanation that he can use but I have a feeling that with enough conversations he will eventually come up with his own definition and it will be exactly the right one for his autism.

Since then he has begun to ask more and more questions.  Sometimes when he is having a difficult day or something is difficult for him, he asks if it is because of his autism.  Sometimes he does something really great in school or a video game and he asks if it is because of his autism.  Of course nothing is entirely because of autism but I love that he is trying to understand this part of who he is.  He acknowledges that some things like emotions are really really hard and that those challenges aren't just going to go away.  He is starting to understand what autism therapy is all about although he acknowledges he doesn't always like it nor does he always want to do it, or understand how it is suppose to help.  He is trying to grapple with some glimmer of understanding that the same elements that make certain aspects of life really hard also make other aspects of life really fun or easy.  For example, his brain is very logical--everything is black and white for me.  This makes him amazing at math and at the same  time makes language extremely challenging.  He doesn't understand how that's possible but he is trying to understand it.  I don't have a great answer because I don't always understand it all either but I do know that some how seeing both sides of the hand that he has been dealt in life will help him to be more well adjusted, confident, and happier in the long run.

I'm in no way trying to paint a pretty picture of every moment of autism.  My giggle monster is struggling with some pretty big anxieties right now because his brain won't let him forget them or be distracted from them.  Things like being able to handle competition are still well outside of his comfort zone.  We don't have the sleep issues conquered in the slightest.  We are still working on helping him find ways to gain the sensory input that he needs while staying safe.  Every day holds the potential for a new challenge or a new opportunity.

I'm not sure I can put my point into words but I felt like I owed it to Caden to try.  The moment that he identified with autism.....I don't know, it's almost as if a huge weight was lifted off of my shoulders.  I really can't explain it but that moment has opened the door to a lot of conversations.  None of those conversations are easy and honestly I don't know if we always give him the "right" answers.  But I never imagined 6 years ago when he lost all language that we would ever be at this point in life.  As he started to regain words, I didn't know if he would ever be able to reveal such deep emotional truths about himself to us.  With so much negativity and bullying that occurs, I didn't know if he would ever be able to accept this part of his identity and I surely didn't imagine that he would stop a conversation that he was uncomfortable with (the ghost story) by stating I'm not okay with this because I have autism. That's self-advocacy and I guess what I'm trying to say (in a lot of wordsis that I am beyond proud of him and that he truly is one of my heroes.

Learning to dance in the rain.......