My family’s struggles have been well documented, in a brutally honest way, here on the blog. I sometimes look back at our most desperately unhappy times, when no amount of hard work seemed to be working, and hope that my kids won’t hate me for over-sharing later on down the line.
I hope they’ll understand that writing my way through the toughest days was my coping mechanism, and words on the page was medication for me. The older I get, the more I realise that cathartic writing is my Prozac.
Last October, we were on our knees. With sleep deprivation, and meltdowns and overwhelm. With in-fighting and name calling and screaming and throwing and hitting. With evenings that rendered me unable to do anything but stare into space, and will the ringing in my ears, and white noise in my head to quiet down. I had a strong gut instinct that we needed to make dramatic changes to even have the slightest chance of surviving.
When I wrote this open letter to other autism mama’s, I had a feeling it would resonate, but never in my wildest dreams did I imagine it would hit home the way it did. That people would get in touch and tell me that my story was their story. Or that until they read my letter, they’d never felt that anyone else understood them and their challenges.
A week after writing it, my husband and I made the decision to pull our then-6yo high functioning autistic daughter out of mainstream school and home educate her. You can read more about our journey here.
When your hard work finally starts paying off
Removing the stress and anxiety that school was causing had an immediate effect. We had a flying start, and saw an end to the two hour long meltdowns, which had become a daily occurrence. Our girl was sleeping better than she had ever before, and she was noticeably happier within herself.
Unfortunately the flying start came to an abrupt end shortly after Christmas. Easter was a low point, then we waded our way through the months (think treacle) until the summer holidays. During this time we took a step back from traditional learning, which was a leap of faith but fortunately the right thing to do.
We’ve never had concerns about Polly’s academic abilities, it’s her emotional intelligence that needs working on.
At points this year it’s been absolutely grim, watching as Polly took out her frustrations on her younger siblings Clara (4) and Freddy (2). I won’t go into detail, as I wrote all about it here, but addressing this became top of our priority list as a family.
Essentially we needed to break the bad habits before they became too ingrained, and intervene early enough for past hurt to be forgotten (no mean feat with children like mine, who have memories likes elephants). It didn’t come easy, or happen overnight, but in the last couple of weeks (dare I say it out loud) we’ve noticed a dramatic difference in the right direction.
Yes, she’s autistic, but Polly is also extremely bright. She knows right from wrong, and doesn’t treat anyone else the way she does Clara and Freddy. So for months now, she’s been given an immediate consequence for violence or spitefulness towards them. The banned list includes hitting, kicking, punching, slapping, pinching, throwing things directly at them, and getting up close in their faces and calling them names.
Although it felt for a long time that she would never get it, eventually she joined the dots. She began to understand that her behaviour would lead to her not getting the thing that she covets the most: playing out with her friends.
We’ve had tears, screaming fits, fists thrown, punches, slaps, scratches (to me). I’ve had to lock all the internal doors and windows so she can’t run off, and listen while she called me names. We’ve had a hundred rounds of ‘I hate you’, ‘you’re mean’, ‘you’re the worst mummy in the world’.
If there’s one thing I’ve learnt through this, it’s that I’m here to be a parent, not my kid’s best friend.
It absolutely had to be done this way, it wasn’t fair on Clara and Freddy to be used as Polly’s punching bag any longer. It’s been soul destroyingly tough at times, but I know it’s for the best. Polly is learning, and things are improving. Slowly but surely, I can see that all the hard work we’ve invested is paying off.
Here’s what we’re doing to break the bad habits that have caused our family so many problems
Find the thing that your child responds to. The removal of privileges discipline technique is not new, but everyone does things differently. It might seem harsh that Polly has had to lose her playing out time, but it was the only thing that she cared about enough for this to have the desired effect. For other kids it might be taking away their tablet, or not getting a bedtime story that evening. Keep the rules super simple: do this thing, have this thing taken away.
P & C. I can’t make promises of course, but I can say from personal experience, that perseverance and consistency have been absolutely key for us.
The right frame of mind. I know only too well how challenging autism can be, and how easy it is to get caught up in putting out the parental fires, and just surviving through the day. It can feel like nothing we are doing is working, but you must have faith in your own abilities. If you’re struggling with your own mindset, you might find my book Become the Best You useful. I’ve had to recently go back and take my own advice – you can read about my struggles here – and have to say it’s helped massively.
Concentrate on tackling one thing at a time. For years our top priority was getting Polly sleeping better (my next autism related blog will be on this topic). Once we’d finally succeeded with that mission, we could direct all our efforts towards breaking the bad habits I’ve mentioned.
Don’t use ‘if’ statements, remember there is no room for grey in the eyes of an autistic child. Never threaten to punish, especially if you have no intention of following through. Instead give a clear and immediate consequence, come what may – expect a blow up and be prepared for it.
Pick your battles. Try to let the little things slide, because less is often more. As hard as it sometimes is to bite my tongue, it can be the difference between defusing the situation quickly, or it escalating and having a full scale riot on my hands.
Separate identity. Give the bad habit/behaviour an identity of it’s own, as we did here. Make it clear that it’s the habit/behaviour causing problems and not the child.
Cool as a cucumber. Try and stay calm. This is my biggest challenge, but I’ve learnt the hardest way that our lives are made a hundred times tougher when I lose my temper.
Don’t give up. It can feel so disheartening when nothing seems to be working, but keep at it. It can take months to properly see results.
Best of luck to you! You’re doing an amazing job, never forget that 💗