I see you, biting your tongue and trying not to roll your eyes at me. I know you think I’m precious and over the top the way I plan my family’s life to the last second. You don’t think I do myself any favours by saying no to seemingly ‘kind offers of help’. To be completely honest, before our diagnosis, I myself thought I was being OTT most of the time, so how can I possibly expect others to not view me this way? Also I’m probably rather paranoid when it comes to these matters – not sleeping for more than a couple of hours at a time for years on end will do that to the best of us.
The thing is, because your own kids are neuro typical, you could never fully understand what it feels like to walk in my shoes; nor would I expect you to. Parenting is challenging enough, constantly juggling and trying not to drop the many balls you have in the air. I haven’t written this to create some kind of ‘them and us’ divide, really I haven’t. It would be great if a little more empathy was displayed though, because it can feel at points that no matter how much I explain why we do the things we do, I still pick up on these vibes.
As you only see tiny snippets of my girl, you are usually privvy to a perfectly ‘normal’ child holding it all together. It must be almost impossible to imagine her in the middle of a sensory overloaded meltdown, like the ones she was having every single day after school towards the end, that were lasting up to two hours. It’s probably tricky to get your head around the idea of a six and a half year old who often sleeps worse than a newborn baby. One who is capable of turning on her little brother and sister for apparently no reason, and in a split second spitefully cause them such pain. How small amounts of food she doesn’t usually eat can impact her for a week; or how a slight change to the normal routine can throw her little world into chaos. Just because you don’t personally witness it, doesn’t mean it doesn’t happen.
I can’t even articulate the extra weight that I carry on my shoulders, and the agonising that goes on inside my mind. My fears about her future, as if growing up in this world wasn’t going to be hard enough. I try not to let my thoughts drift too far though, for the fear that she’s going to get chewed up and spat back out in the harshest of ways. With all our early intervention strategies I sincerely hope this isn’t going to be the case obviously, but people with no experience of autism telling me that “she’ll be fine” does very little to make me feel better.
I hope this note goes some way to helping you understand us a bit better. Please don’t take offence, or search for hidden meaning behind my words, because truly there are none to be found. I’m not blaming you for your lack of insight into our world. How on earth could I, when I’m still getting to grips with it myself?
Forgive me if I’m barking up the wrong tree, but I’ve been teetering on the edge for quite some time now.
Very best regards,
(aka autism mama)