Disability is a strange concept to come to terms with.
The anticipation of having a broken tooth removed via a cut made into my gum was a little unsetting. However, I remained brave and went and sat in the dentists chair. The dental nurse asked me how old Zack was. Oh, he's nearly one I replied to which she asked if he was walking yet.
Now I could have quite easily said oh no, not yet, but I didn't, instead I said, no he isn't, he has cerebral palsy. When you tell people this the usual reaction is an oh and then nothing.......no questions, just an uncomfortable silence, which I usually fill in with a, but he's doing very well. This is usually to make the other person feel less uncomfortable. The thing is, I wish I could say, look it's okay, you can ask me what you like, don't be frightened about talking about it, it isn't tragic, I'm not going to get upset and most of all I am not disappointed, embarrassed, ashamed or even down about it, which is perhaps why I didn't just leave it at the no he can't quite walk yet answer.
This little incident made me think that now Zack is getting bigger it is becoming more obvious that he is different to other children. You see no-one expects a young baby to be doing much, but now he is nearly one and you tell people his age, you can see them wondering why he isn't sitting up and joining in with the world. And because he looks so (and I am biased) perfect, I can also see them thinking well what's wrong with him, wanting to ask but being too polite to ask.
Sometimes when we are carrying Zack he rests his head on our shoulder as he can't hold it up for a long time. He looks like he is sleeping so we get lots of aaaahs and oooh is he tired? In my head I am saying no he isn't bloody tired he can't lift his head up because he has brain damage and poor muscle control but he is trying his best, now sod off and just carry on with your shopping. In reality I just smile and say mmmmm he must be a little tired.
Disability is a strange concept to come to terms with. It generates so many different feelings, a lot of them negative. People who are not affected by disability in their life I would guess find it uncomfortable. I was one of those people. I used to wonder how parents coped with children with severe disabilities and think I could never do that. I used to think that the people who choose to teach children and adults with special needs were amazing because I couldn't do that. I know differently now. I know the good and the bad. I understand that a lot of it is just fear that holds us back from understanding and fear that holds us back from asking the questions to the things we want to know but are too afraid to ask.
It is the same with family and friends. Some have been fantastic and are very comfortable with everything and are not afraid to ask me or Dan questions about Zack and his condition. Others I know are unsure about whether it's okay to ask about him. To them I would say please don't be afraid to talk to us, he isn't any different to other children, he just has a few special extras. He's just a little boy who wants to experience the world the best he can. But for an hour and half on Monday morning it was in the dental waiting room, asleep, with a mummy who was working on not passing out in the dentist chair.