The Super Hero Convention

Today was the Autism Speaks Walk in Raleigh. It was really fun. It felt amazing to know we had such support behind us-between our teammates and the dozens of donations we have received. I saw a lot of families have identified with the Super Hero narrative. I really did feel like today was a convention of Super Heroes. I loved seeing this little boy happily tracking one bubble up into the sky-just like Sofie would. I loved seeing Sofie among fellow treasure seekers that were combing the landscape for treasures the rest of us can't see. Sofie really seemed to get that the day was a celebration of her. Although I suspect that is how she feels about most days.

One of my favorite moments was dancing with Sofie while the DJ blared pop music. Sofie loved bouncing in my arms and had this big smile. After we completed the walk, Sofie grew tired of party music and began to zone out a bit. I think most toddlers would have reacted the same way. I saw a little boy who was much more sensitive to loud noise. He said the National Anthem at the opening ceremony. He had his hands over his ears and struggled with people clapping for him. It makes me so grateful Sofie is not a sensory avoider. My hat goes off to every family helping a sensory avoider-that is a challenging super power. The day left me feeling like we really hit the lottery. One of the organizers had asked me yesterday if I would like to say a little quick thing of why I walk for Autism Speaks. She made it sound very casual and brief so I agreed. Thank God time did not allow for me to speak because I didn't feel like I deserved to share the stage with the warriors that would have spoke before me. One mom spoke of her child that was diagnosed two months ago-her child is TEN. Another speaker was a young woman speaking about her blind autistic brother who is struggling to cope with life at his new school for the Blind. She spoke of terrible tantrums and an inability to speak intelligibly. How do you follow that? Especially when I had planned to simply say that I was so grateful for Sofie's early diagnosis and that therapy is a God Sent. And I would have closed with saying that I was so thankful for Sofie's progress. I can't imagine my cake-walk story following the sibling of a brave blind autistic boy. I am a really lucky person.

The best way I could describe today would be to ask you to imagine a Super Hero Convention. And all these sweet beautiful super heroes gather there. And Sofie, along with a few others, is loving the opportunity to enjoy her powers. They are flying high. Wind is in their faces and they can't get enough. Sofie is using her treasure-seeking powers and is spotting beauty in little objects boring people like me would pass over or step on. Sofie is spotting the rays of sunlight on the concrete and is making a point of touching every spot of golden yellow. Sofie bounces to the bass of the music gleefully and when it becomes too much she uses her super coping powers and grabs onto her ear and goes to her "happy place" (a place she has an easier and easier time coming back from, thanks to therapy). I delight in seeing these playful super heroes with Sofie and I catch myself wanting to say "Aren't their powers amazing? Aren't their brains fascinating? How they see the world, what a gift?" But I stop myself because I see the families of super-sensitive super heroes wiping a tear away now and then. If I was to stick my foot in my mouth with these parents and say "Aren't their powers amazing?" I imagine I would get a complex answer.

It's easy for a parent of a treasure-seeking super hero that gives hugs to say "isn't this amazing?" I can oddly enough here the response to a question I dared not ask today. I hear this tearful mother or father saying:
Yes, we are so proud of our child. We love him with all of our heart. But can our child fly? We don't know. He wouldn't dare. The wind on his face feels like a thousand needles. Is our child a treasure seeker? I suppose in some ways, yes. If you count only seeing a few things in the entire world worth noticing.  And on most days our baby's family doesn't make the cut. Does our child love music and being silly? I don't know. He is so sensitive to loud sounds that the agitation makes it pretty impossible to enjoy any melody. As for being silly, yes, he can be silly sometimes. I just wish with all my heart I knew how to make him laugh when I feel like I'm an expert in what makes him cry, yell, or bang his head. Yes, our child has powers but it shouldn't be this hard to have them. Yes, our child has an amazing brain but it shouldn't be this hard for him to share his gifts. It shouldn't be this hard for me to give him a hug or for him to look me in the eye. It's not fair. Why do some super heroes fly and others sit in a corner alone?

Today I feel undeservedly lucky to have a super hero that can fly. And the list of things I wish my super hero could do and the list of anxieties I have for the future seem trivial. My super hero can fly and I pray to God she always can.

And to all the families with super heroes sitting in the corner, I wish I could give you a hug-and I pray one day we figure out how to get your super hero to do the same.