Wednesday, June 2, 2010

There's a Merry-go-Round out there

The blogosphere is a big, bad, dangerous jungle. I went autism blog hopping yesterday and it frightened me. Not all of it, but I found some pages that I could only describe as tub-thumping rants written by single-minded zealots.

I remember back in the dim distant past my years of membership on listserves, which were possibly the forerunners of blogs. I remember the years of googling, testing, and searching; of taking the boys to appointments here, there and everywhere; of wanting answers. I remember the boys getting sick and tired of it all and telling me to stop, and realising that I was tired of speaking in acronyms too.

I'm glad I did all that, and I wish I hadn't.

On the positive side, all the testing and reading and questioning definitely helped me to understand the boys, and find tools and explanations that helped the boys understand themselves.

On the negative side, it took so much time. Time from their lives and mine, that could have been spent...

There is an ASD merry-go-round. You hop on when the you get that first ticket that says 'something is different about your child'. The hardest decision to make is when to get off.

The merry-go-round lures you back - a new therapy, a new test, a new cure possibility. This could be the magic bullet for your child, and if you don't try it, you've ruined your child's life. You have to try everything, just in case.

Hop off too soon, and you won't have the information and tools to help your child.

Stay on too long, and your child will be all grown up, and berating you for turning their childhood into a science experiment.

My little guinea pigs grew up and said "enough", and I had to respect that. About five years ago, I stepped off the merry-go-round.

Reading round the blogosphere yesterday freaked me. I found the merry-go-round again, and it was tempting me back for another ride.

The maybes of doubt were creeping in:
"Maybe if I'd put more effort into..."
"Maybe if I'd tried..."
"Maybe I should do a bit more research on..."

Begone, you wicked maybes. I did what I reasonably could. Some things worked, some were a complete waste of time.

My boys are now in control of their own futures (aided and abetted still, and ever, by their mum).

No more merry-go-round for me.


  1. You know, I am learning that very same lesson too Lisa. I actually find that with that task of stepping off the merry go round, my acceptance grows. That's more peaceful. I think for everyone.

  2. Great post Lisa.

    In the diagnosis stage was definitely on the Merry Go Round. Once the we had the diagnosis it was advocating mostly because he teacher and the extended family couldn;t see it. I think I got off too early. I think I did the nobody is going to help us, he seems to cope okayish at school let's just leave it.

    Searching for a High School has made me wonder if I did enough for him. He is starting with behaviours he hasn't had for years and now I feel I have failed him. :(

    I'm in maybe land at the moment and that makes me sad.

  3. E, what sort of behaviours?

    Don't discount the 'growing out of primary school' stage. The one where absolutely everything about the place is boring, and old, and driving them crazy, and they're growing up, and the school is still treating them like little kids, and oh the frustration of it all.

    I think that's the best way to describe it. Going through it for the 3rd time here. Copping it almost every afternoon as the frustrations are taken out on everyone. It's tedious.

  4. Hi Lisa!
    Gotcha from the Mad Mother - and I love you already from the title of your blog. I have said for so long "my son is just wired differently".

    Nice to meet you

  5. I love this post Lisa! I have only been on the merrygoround for about 6 months and I've already gotten on and off several times, dragging my little guy with me each time. Instinct is so important in this kind of environment - you trusted yours (and your boys) when you decided it was time to get off for good.

    You know I was actually kicked off an Autism Yahoo group because the mother who ran it wouldn't tolerate anyone suggesting that Autism at some point needs to be accepted and embraced and worked with, instead of fought, and rejected, and worked against.

    I didn't even know you had a blog until I clicked on your profile! I was looking to contact you about an upcoming Q&A and giveaway with Chynna Laird on my blog - I'm looking for followers who'd be interested in submitting one or two questions for her. Let me know (click the contactr button on my blog) if you'd like to participate!