In the dark

Since the diagnosis nothing seems to be happening. We've had the report through that essentially minutes everything we said at the diagnosis, and we're on another waiting list for some workshop that helps us deal with tantrums, that kind of thing... but I don't really understand what happens now. Will there be therapy sessions, what? I don't understand how this works.

There's talk of this team and that team getting involved, but who, when and how I don't understand? It made no more sense to me the second time I asked.

I still feel like I don't entirely understand the diagnosis, just what is ASD? I get that it's a spectrum disorder but it's so wide it could mean almost anything right now. I don't know whether my son is just different, or disabled, whether he'll grow up to be quirky or need lifelong care, will he marry and have children or never have any friends? 

I don't know where on the spectrum he is, they wouldn't answer me that, they were very reluctant to say anything at all about outcome. When I said I'd read that early intervention is key they said "he's four, so we've got him fairly early"

But then they aren't doing anything...

Some days I feel like I've accepted this, but then I realise I've just got my head in the sand. Some days I feel sick with worry and everything feels bleak, other days I just think, "so what, he's different, that's all, haven't I always been unconventional?"

Some days we don't come up against any obstacles and everything is good. Then we'll try and take him somewhere new, do something I think he'll like, and he'll stand screaming with his hands over his ears while I try to stay calm and reassure him, knowing people are staring. Some will get it, some smile and say their kid does the same, some will judge, even your own friends and family which hurts. I handle it better than I once did, but some days it happens repeatedly and it's like we can't do anything or go anywhere. That's when I feel dark.

I always thought when I had kids we'd have so much fun together, I'd take them to amazing places, make wonderful memories for them. But going to new places is so hard and so stressful.

Do I need to redefine my vision of the perfect childhood to one that will make him happy, even if it's different from mine? Probably. Yes. I do.

Facebook hurts too, I know I know, it's peoples highlights and not the whole truth, but I find it hard to see the pictures of other children playing with their friends, at birthday parties, doing all these exciting things, alongside such statements as "Ollie couldn't wait to get back to nursery to see his little friends, he's little mr popular, I'm so proud!" My son has formed a few connections now at nursery but he keeps telling me how he wants to push them over and make them cry. Every time his teachers tell me that it makes me want to cry.

But then he'll surprise me, he'll actually sit at a different table in the cafe when his favourite table is occupied, without making any kind of scene. And he doesn't get hysterical when the cafe door is left open the way he usually does.

That's when I start thinking maybe it's all a phase that will go away... Mine will be the kid that's cured and we'll all laugh about this one day. Then I feel guilty for the people that doesn't happen to. Then I realise I'm one of them now. 

I don't know I'm ready to be defined as an autism parent yet. Where do I stand on self advocacy versus cure? I've learned almost a new language recently, stimming. There's a word that was never in my vocabulary before.

The other night I burst into tears over something and nothing, but my son reached out and touch my arm and said, "Want to make mummy happy." Yes I melted. I didn't think autistic kids did things like that. I really don't know very much.

Whatever he is though, he's so wonderful. He's funny, affectionate, ever so sweet. I guess no ones future is set in stone, autistic or not, there are no guarantees. I will come to terms with this.