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.
Doing better than Light it Up Blue
1 week ago