There are many lessons I’ve learnt since my eldest daughter Polly’s autism diagnosis in 2015. Some things have come fairly easily, others have felt like a perpetual battle. For world autism awareness day 2019, I thought I’d share some of these with you. Sending love to anyone struggling, I hope this piece helps.
Almost all meltdowns and episodes of ‘bad behaviour’ stem from anxiety
It took me a while to figure out that every single time Polly acts up, there is a deeper reason. As all autism mama’s and papa’s know, meltdowns are not the same as temper tantrums, they come from a feeling of being overwhelmed by life. The best way to stop meltdowns is to get really good at identifying your child’s triggers.
When Polly feels upset or anxious about something, she will often start lashing out at her younger brother and sister. If my husband or I manage to step in early enough, we can usually nip it in the bud before it escalates. That way we have the best chance of calming our girl down before she’s too angry, and figure out what’s really bugging her.
However, it’s also worth stating what (might be) the obvious. Yes she is autistic, but she’s also a not-quite ten year old kid. Nine year olds are well known for being annoying at times, and if you have a precocious child on your hands, even more so. Sometimes their behaviour is purely them acting their age, completely in line with their peers. On the spectrum or not.
Choosing battles wisely to help create harmony for the bigger picture
I often joke about how much my standards have dropped in the last few years. I was full of ideas about how things would be when I had a family BEFORE I had children, and with each new addition, my ideals have loosened up. I don’t plan too far in advance these days, and I’m a whole lot more flexible than I used to be.
I never hesitate to cancel plans, or change things at the last minute, if I know the original plans are going to cause us problems. I’m also okay with preparing three or four different versions of dinner, because I would rather my kids eat than bash my head against the wall.
We must learn to trust our parental instincts
Regardless of who tries to tell us otherwise, and how qualified they might (or might not!) be, our parental instincts are our biggest asset. Especially when we have kids with extras. Once we’ve tuned into our gut feelings, they will not let us down. On the odd occasion that I have gone against my instincts, it has been an absolute disaster.
When we sent Polly back to school after the summer holidays in 2015, I knew in my heart of hearts that she’d be better off home educated. She was only at school for seven weeks of the new academic year, before we decided that home education was definitely the right path for us, but it was seven weeks too many. The damage they caused took us a long time to undo. Since then, I vowed to never go against my gut, and I’m proud to say I haven’t, so far.
There’s a brilliant Grace Hopper quote that I adore: “the most dangerous phrase is: this is the way we’ve always done it.” My husband and I are always on the lookout for ways to improve family life. Often it requires digging deep, and assessing ourselves as much as the kids. Not going to lie, this can be a bitter pill to swallow, but positive change cannot be underestimated.
A loving push
I stand firmly behind what Temple Grandin has said about lovingly pushing autistic kids out of their comfort zone. A few years ago Polly was tripping over her own feet as she walked, and could barely cross her legs. So we enrolled her into a weekly gymnastics class, and started encouraging lots of OT activities at home (including setting up a mini trampoline in our living room).
Next she was terrified of the idea of taking the stabilisers off her bike. After a full day in the park, dedicated to her learning to ride it on two wheels, she started getting the hang of it. The mere mention of swimming without armbands was once enough to induce a meltdown, but lots of practice later (without organised lessons, but one to one with mostly my husband), and she is a very proficient swimmer. Polly has become a valued member of the jujitsu club she attends on a Saturday. She can cartwheel, do round offs and has very nearly nailed the splits. Most adults are put to shame by Polly’s cooking skills, and she’s given all the freedom she wants in the kitchen to hone her craft.
Feeling the fear, but not letting it stop us
Polly will never feel like something is coming easy to her. She will always have to put in a crap tonne of effort to get the same results as many of her friends. She will probably always be a kid who feels the fear a hundred times more than her peers. But she does it anyway, and I couldn’t be prouder of her for that.
As a mum, perhaps the biggest lesson I’ve learnt has been to let go of what I used to think we should be doing as a family. Tuning out from the lies we are fed on social media. Not allowing FOMO to take hold. Slaying the green eyed monster. We do things our way, and for that I make no apologies.