When you tell people your son has autism mostly the response is ‘oh I’m sorry’.
Sorry for what?
Ok it’s not what I signed up for when I decided to have a child. I didn’t think I’d be changing nappies at 5, not having a conversation with him at 5, not taken him away on holidays, joining in so many activities that children of his age can do,swimming lessons even standing around a freezing cold field watching kids chase a ball.
But he’s my son and autism is part of him. It’s life.
People may see the screaming child in a shop when things get too much, they may hear me continuously saying ‘good boy’, ‘you’re doing well’ as we do our food shop, may hear me tell him what we need to get next. They may see him not wanting to go in a shop, not attempt to play with other children. They may see him as the strange kid. Know what I’m used to that I’m over it, of course when that ‘I’m sorry’, comes I want to get defensive and ask why are they sorry.
Because what people don’t get to see.
The clever, funny, fun loving little guy.
The smile he gives after he’s done a jigsaw on his own after many many times of trying and failing, of giving up because he’s not got the ability to sit there for any longer. That smile to say look Mam I done it, the look of proudness when I say ‘yeah’, on his little face.
The milestones he’s hit to be where he is now. To be able to walk in to a shop for a few things is something going back last year I wouldn’t have attempted for all the money in the world! Now we can walk around Asda getting pizza crisps and bread for pack lunch! Ok he hates waiting in the line to pay but it’s all coming along.
What people don’t see is how far he’s come to be able to do these things, when he repeats a new word, when he follows a very basic simple command that your average aged toddler can do, or when he looks directly at you and smiles for however brief it’ll be. His infectious giggle, or his belly laugh when he’s babbling away to himself in the mirror.
No one gets to see the challenges he faces every day, but he does and he does them with a smile on his face. He can’t tell me if he’s feeling unwell and doesn’t want to go to school so he goes.
I’m sorry, so for what?
His life?
Our life?
My life?
We know no different. This is all we know.
We’re used to trying to work out what’s up or what he wants. We’re used to the smell of poo and possibly even used to the no sleep.
I’d be lying if I said it’s easy, but isn’t being a parent hard enough?
I’m not sorry for Z, ok some days I hate autism, I hate what it’s taken away from us as a family, but I love what it’s given us, because as I’ve said before without autism Z wouldn’t be who he is. He wouldn’t be that fun, loving, cheeky clever kid that he is.