Figuring it Out

I pulled into the parking spot, and that's when I saw her. A woman standing behind a table with the words Autism Awareness on a large sign. She was collecting donations for the cause.

I could feel my heart beating faster. In the past, I would have had no problem giving a quick, polite smile and hurrying into the store, or simply avoiding eye contact like I do with the Girl Scouts every year when it's cookie season time. But something inside me said I couldn't ignore her, as all of the other patrons appeared to be doing. I knew I had to go talk to her.

I approached her table, and she started softly rattling off her memorized lines that she had probably said to a dozen people that evening, without any response. 

When she finished, I smiled and said, "My son has autism". I could hear my voice shaking as the words came out. I forced myself to take a deep breath, to steady myself.

I have literally said those words a handful of times. And definitely never to a stranger. I think those words every day; I live them. Still, they sounded foreign coming out of my mouth, stopping me in my tracks.

The woman's eyes brightened a bit. She handed me a pamphlet on autism, and asked if I had read it. I told her no, and took it, although I knew what it would say. I've read dozens of pamphlets and internet articles on autism; I would be surprised to learn something new at this point. I spotted a donation box filled with some dollar bills, and I told her I would see if I could get some cash while in the store.

Even though I finally opened up about Binker's diagnosis on my blog here, I know that I still keep a lot of it internalized. I don't walk around with a sign on me that reads, "I have a child with autism". To most, I smile and say everything is great, and, honestly, as I wrote about, things are very good. The progress he made this past year is amazing, and I know he will continue to do so, but there are difficult days - when he is overly tired, when he gets frustrated at a toy, or scared in the night but is unable to explain why - and then everything just melts down. During those times, I feel like I am walking on egg shells around my child. Trying so hard to stay one step ahead of him - trying to anticipate what he will want - so that he doesn't get even more upset. 

I feel uncomfortable when we're out in public and strangers will try to talk to him. They ask him questions, like how old he is, how many siblings he has, is he excited about the new baby, what's his name. They always look a bit perplexed when Binker doesn't answer, or he repeats the question they just asked, or he answers by saying something like, "The light is on!" While looking at the ceiling lights. I always try to answer for him, or make some excuse about him being shy.  

On one hand, it would be so easy to just tell everyone we come in contact with up front that Binker has autism, but on the other hand, I don't want that to be the first thing people know about him.

We left Binker's first pediatrician, who initially got us on this path, because I did not appreciate his bed side manner with Jacob, or the way in which he handled the situation as a whole, but there was one thing he told us that I have tried to keep as my mantra this past year. When we were in his office, and we knew we would have to wait to get in to see the speech therapist, and any specialists, I felt so helpless. There is nothing worse than wanting to help your child, and not being able to take immediate action. I asked the doctor what we should do in the meantime. His answer: Treat him like a typical kid, just as you would if he didn't have autism. 

I have done my best to treat him the same as I treat his brothers. Obviously there are times when I cut him some slack, when I don't think he fully understands what it is we're telling him, or asking of him, but for the most part, he is treated just like any typical three year old boy. That's how I see him, too. To me, he is my sweet, funny, bright, lovable firstborn son. Who just happens to have autism.

It was nice to be able to open up to that woman at the store, almost cathartic in a way. But at the end of the day, I want the world to see Binker the way I see him. Just wonderful and awesome, the way God made him. 

I guess I'm still figuring this all out as we go.