Dear Autism Mama,
You have become so well versed in putting on a brave face, and are so convincing when telling people you are fine, that most do not realise how broken you are. I do though.
I see your anxious looking face behind your big black sunglasses, worn in all weather to disguise the exhaustion and sadness in your eyes. I recognise your pained expression when you’re waiting for your child to come out of school, knowing that their mood will dictate your entire evening.
Sometimes you feel like a fraud, because your autistic child is high functioning, and you question whether you even have the right to complain when other families have it so much worse.
You get the feeling that some people think you’re over the top. That you should be more relaxed about late nights and last minute changes to plans. It can appear that they aren’t respecting your need to stick to the routine, and it infuriates you when they meddle with your system.
Largely people are well meaning, but some are plain ignorant.
“Are you sure?”
“They don’t look autistic.”
“I’ve never once witnessed them being anything other than lovely.”
“If they hold it all together at school then surely they are fine?”
“Maybe they’ll grow out of it with enough tough love”
Your heart breaks for them when they don’t get invited to birthday parties, but you’re also relieved, because it’s one less disaster waiting to happen to deal with.
You feel like a failure often. Like there is always more you should be doing.
You’ve heard that certain diets can help with autistic kids, but there’s no scientific evidence backing up these theories, and you’ve got way too much on your plate to be making such drastic lifestyle changes unless you know for certain they will provide results.
All your efforts go into putting out fires – stopping the meltdowns in their tracks, breaking up the fights before they get too nasty – and it leaves no room for you to enjoy your children.
You try not to spend too much time on Facebook, but can’t help yourself. You do your utmost to tune out to other mums talking about how great their kids are, but it still stings a bit when you see your child’s peers excelling and leaving them behind.
You agonise over how their behaviour is affecting their siblings
You despair when you see reflections of them you’d rather not in your other children. On particularly dark days you worry they are also on the spectrum.
You’ve learnt that jumping on the spot when things don’t go their way is the warning signal that an explosion is coming. Some days you stay cucumber cool and manage to avert it. You encourage them to channel their energy elsewhere. Perhaps they create you a mini masterpiece and for a few minutes you feel proud of how far you’ve come. Other days it’s all too much and you get angry yourself, essentially have a temper tantrum and make everyone’s life about a million times harder than it needs to be.
I won’t even bother wasting space talking about the sheer horrendousness that is known as the witching hour!
Although you and your other half work together as a team for the most part, you still fear for your relationship long term. Are your foundations rock solid enough to survive autism? You certainly hope they are, but wouldn’t want to put money on it.
If you can get through this you can get through anything you repeat like a mantra.
Crazy thoughts run through your mind every day. How will you be able to equip them with all the tools they need for life? How will they cope when they’re older? Will the big bad world understand your precious baby, or will it swallow them up? Will their invisible disability ruin their chances of happiness?
You wonder how much more you can take, and celebrate getting to the end of another week without having a breakdown.
I know it’s hard, but can you please promise me these things? I know from experience they can make all the difference.
That you’ll stop being so hard on yourself, and start being kind to the woman in the mirror?
That you’ll seek solace in the things that make you smile, find your happy place and visit it often?
That you’ll take up any offer of help that’s on the table?
From one autism mama to another I am certain that you are doing a sterling job, even if you don’t think you are.
All the very best to you and your family.
Keep on keeping on. It’s all you can do!