The Things I’ve Learnt in the Year Since my Daughter’s Autism Diagnosis

one year on from autism diagnosis blog titleIt’s been a full year since my eldest daughter Polly (7) was diagnosed with high functioning autism.

To say it’s been a rocky road from there to here would be an understatement. We pulled her out of mainstream school and have been home educating since November, which has gone to prove that above all else, us parents have to listen to our instincts and do whatever it takes to make our babies happy.

Here are some of the other things I’ve learnt on my journey as an autism mama

Low expectations. That’s not to say that I let my kids run wild, and don’t have aspirations for them, but I don’t place ridiculously high expectations upon their tiny shoulders. I’ve come to accept that not all days are going to be great learning days, or wonderful relationship-fostering days.

Celebrate the successes. Big wins in our house include Polly sleeping all night, or when she goes to the toilet in the small hours without waking me or my husband up. If we manage to get through the morning without violence, Polly cooperates with her learning, or gets through a whole weekend without having meltdowns, then it’s more cause for celebration. Our wins might seem small and insignificant to other people, but they make all the difference for our family.

Consistency is key. Most kids thrive in a stable routine, and like to know what’s expected of them, but with autistic kids these things are absolutely vital, especially when it comes to bedtime and sleep. Last June we set about creating good sleep hygiene, and each month we’ve seen improvements. Back when Polly was waking up ten times each night as standard, I pinned a lot of hopes on all our troubles disappearing when she started sleeping better. Unfortunately even when she does sleep through the night, she often wakes up in a foul mood, and we’ve concluded recently that her sleep quality isn’t great. However – and it’s a HUGE ‘but’ – if I’m well rested then I can cope with our day so much better than I would if I’ve pieced together a few broken hours.

rainman autismCare less. I grew up in a noisy dysfunctional household, where the loudest shouter got heard. Surviving my childhood was a huge accomplishment in itself, and I didn’t go into adulthood paying too much attention to what other people thought of me. I care even less nowadays, and never actively think that I’m being judged. This is partly because I’m not on the lookout for it, but also because I have enough to worry about without adding other people’s opinions to the mix. Good vibes and helpful suggestions are welcome, anything else can do one.

Consequences and rewards. Polly loves being incentivised, but can become obsessed with the reward, and in the process talk herself out of it. For example if I promise TV once we’ve finished our learning, she will get so focused on the idea of on watching her programmes that she’ll stop concentrating on the task at hand. I have to dish out rewards immediately if they are appropriate, and the same goes for consequences. If things happen which cannot have a blind eye turned towards them, giving an immediate consequence is vital. It might result in some form of fallout, but we can deal with that and all move on. There is nothing worse than threatening action and not following through with it.

A gentle push out of her comfort zone. Temple Grandin, a commonly revered autism expert, says that it’s essential to lovingly push our kids to step outside their comfort zone. I’ve witnessed this in Polly so much, be it when she’s in her gymnastics class, diligently working through her books, or on our recent holiday when she was learning to swim without armbands. As long as she’s given tons of encouragement, and she feels safe, then she’ll feel the fear and do it anyway. Seeing her progress has been the most heart warming part of this year.

Stop searching for the answers. I’ve learnt that the answer is not at the end of a google search, or at the bottom of a bottle. The answers can’t be found, because they don’t exist. No-one else’s child is Polly, she’s uniquely her, and the answers to her problems won’t be the same as other kids. The answer for us, which is the hardest part for me personally, is to always remain calm in the face of adversity, especially during certain times of the month. This is another thing I’ve come to accept though, I’m not a robot, and I will lose my shit every now and then. And that’s okay, providing that losing my shit doesn’t become the norm. The answer is always love, love and more love. Oh and remaining as positive as possible, even when everything appears to be falling apart.

Solidarity. Us autism parents are not alone. If you’re reading this, and feeling alone, you might like to watch the video below.

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