Earlier this year, I discovered a special needs parents support group that meets fortnightly not too far from where I live. The first week I was busy, the second I was ill. The third I forgot about it because I suspect I was having a good day. The following time, I went to bed the night before determined that this time, I would definitely go.
I didn’t go. Because I was having a bad day. It’s the ultimate catch 22. When you don’t need help, you don’t see the point of going, you don’t go because to go would be a fraud. When you do need help, you can’t go, because all your energy is focused on getting through the day. And going somewhere new, where you don’t know anybody, and you suspect that maybe you don’t belong anyway, it’s tricky on a bad day. So on bad day you need to have gone on the good days, but on good days you don’t want to go and think about how bad the days get.
Maybe I am just not made for support groups.
Maybe I was over thinking it.
Trouble is, nobody talks about this stuff. You hear the stories about the tired mums of kids at the “bottom” end of the spectrum. You hear stories about how brilliantly proud parents are of their “high-functioning” autism kids, how the kids are heroes. Sometimes it feels like a competition, or some weird classification system. Just how bad are your kid’s needs? Because only really bad needs count for this narrative. Your child looks normal. She needs to go in the inspirational hero group. But sorry, she can’t actually pass as normal (whatever that means). She doesn’t make you giddy with glee and give greater meaning to your every breath. Try the other group. Although no, you won’t fit there either. Hmm.
Nobody talks about the kids in between – the ones with words (but not enough), who can cope at school (but only just, and then the weekend is recovery time not family time), who can spot the tiniest difference but not realise when someone is angry. Nobody talks about how you can’t go out but you can’t stay in and the meltdowns that are always a moment away and leave us all feeling punch drunk, dizzy and weary and heartbroken again.
Nobody talks about it, which means when I want to ask for help, either I’m wrong, or I’m weak. Or maybe, I’m right, and nobody wants to talk about it.