Heavy Heart

Most recently Nicholas was playing with another child at a function. This child is very kind and open to other adults, yet as I listened closer I could hear the "Normal" society's opinion of Duchenne come out of this young child's mouth and it made my heart very heavy. I could tell it wasn't purposely directed at my son, but ignorance that is taught and passed down from his parents without even realising it.

The day started out very normal for us, chasing the kids around trying to get them ready for our day. Nicholas screaming that he wanted to do something other than getting dressed, and Bella continuously saying she has to sit on the toilet. We finally got to our destination 20 minutes late and feeling full of anxiety,s then being told that we were late didn't make me feel any better. But all was well and the kids settled in as always.

Nicholas of course started playing with cars and wanted to play with the other children. He typically will play side by side and not with other children, but this day was different. Nicholas was trying very hard to interact, which is a huge step for him. I did my best to step back and let him play, but I listened closely just in case I had to intervene due to screaming or throwing toys. The first hour went very well and everyone seemed happy.

I herd a door slam! The first thing I thought was my son got mad, angry, sad and slammed the door on his sister. Nicholas came running straight to me, crying saying "not nice, he pushed me out of the room, he doesn't like me"! So I decided to go around the corner and as I did I herd this "I don't like him, he is slow and he isn't cool, he is following me, tell him to go away", the parent just told the child to go play in the other room away from my son. So in my mind, the parent condoned the behavior of slamming the door in my sons face. Condoned that the child didn't like my child because he was slow and not "cool".  I keep thinking to myself, maybe I'm being over-protective, over-looking the situation.

As the month has gone by I have realised that we avoid birthday parties, farmers markets (jump houses) all because the other kids cant understand why my son takes his time climbing onto things, slow to catch a ball, cant get up or run as quickly as them. I have seen him pushed to the ground, yelled at and now rejected. This is so hurtful especially coming from his peers. I believe it could all be avoided if parents took the time to talk with their children, teach their children, not just send them to play in another room or avoid playing with a child who has a disability. They learn how to socialize as adults from playing as a child.

My heart is heavy because my son did not understand why, he wants to be a normal child, he doesn't want to be slow or hard to understand. He just wants to be Nicholas...