Thursday, 19 April 2012

Feeling blue

Tonight, there is a programme on BBC2 about autism. I think it's important for us to watch it (me in particular, I think Tim might find it upsetting) & I think it's great to raise awareness of autism. But I've just watched 3 clips of it on the BBC website & feel really sad.
Some of the teenagers featured have severe autism and are non-verbal. I am sooo sooo desperate for River to be able to talk. If someone told me River won't talk until he's 4, that's fine. I could cope with that. But not knowing if he'll ever talk is such a massive fear for me. I know there are so many parents whose autistic kids are non-verbal & cope brilliantly, but to me it just feels awful. The one bit of speech River did have- "baa baa baa" - he's now lost.
In every article I've read, when asked whether they'd change their child they always say no. "If someone told me they could take away my child's autism, I wouldn't want them to. It's part of who they are."

But I would. Don't get me wrong, I love River's quirks & personality and love him for who he is but I feel so sad that he is going to face certain struggles that others won't, & will be judged by people. I don't want him to be a social butterfly, but I don't want him to be scared of people & distressed by the mere presence of other people. And I don't expect him to enjoy every minute of life- who does?- but I don't want the world to be a confusing & scary place for him. Does that make me a bad mother? I feel so bad that I want to 'change' something about him.

Another thing that I feel terribly guilty about is when I look at him, I see autism. It's the first thing I see. And it's constant. Everyone says to me, "He's still your wonderful little boy" &  "Don't forgot to enjoy him just for being River." And I so desperately wish I could.
It starts as soon as I see him in the morning. I open his bedroom door & say, "Hello River! Hello!" whilst waving (in an attempt to teach him to wave!) & he just stares into space, as if he hasn't heard me or seen me. That's because he's autistic, I think. I pick him up, he still hasn't even looked at me or acknowledged me- that's because he's autistic, I think. I attempt to take him downstairs, but if I try to walk past my bedroom he screams. He HAS to sit on my bed & watch a Thomas DVD before he can face going downstairs. That's because he's autistic. Whilst watching the DVD, he cimbs off the bed & runs up & down our bedroom flapping his arms. That's because he's autistic. We eventually make it downstairs & I give him some toast on a plate. He upturns the plate & spins it. That's because he's autistic. He carries the toast, handful at a time, & places it in a pile on the Examining Chair (armchair.) That's because he's autistic. He then eventually eats the toast, whilst staring out the window out of the corner of his eye. That's because he's autistic.

And this is all before our day has started.

I desperately want to think, "That's because he's River. It's just what River does." But I can't. Autism is always there first. Will my mindset better over time? Will it get better once we've got a diagnosis & can move on? Or am I a bad mother & am always going to think like this?

Who bloody knows.

And it's raining today.

1 comment:

  1. *hugs* oh hunni it is so hard. I feel like I am constantly looking for signs of AS in Skye. I know it is because I need to have them stored up in my memory to use as evidence when needed..not that I ever can recall them. This is why we need a dx!

    You have to remember that it's a River thing that it has to be thomas...that toast is taken to his chair. Keep your chin up hunni you are doing so well.