Autism Help: What Has Truly Worked For My 10yo Daughter Since Her Diagnosis in 2015 and What “Advice” I’ve Ignored

autism help

If you type “autism help” into Google, the first things that come up are adverts. Essentially trying to sell you solutions to your child’s autism. Then come the guides and articles that certainly look helpful. In a very generic, written-by-experts type of way. I’m not claiming to be an expert, by any stretch of the imagination. I’m just a mum of three, whose eldest daughter happens to be autistic.

A mum who spent three solid years teetering on the edge of a mental breakdown. Forced into home education by an under funded and uncaring school system. One who has been to the depths of hell and back – with challenging, violent behaviour and soul crushing sleep deprivation. If this rings bells for you, my words might just resonate.

Schooling and the other F word

When Polly was diagnosed in 2015 our little family was in a pretty bad way. She was averaging five broken hours sleep per night. After school meltdowns were between one and two hours, every evening. Her violent behaviour towards her younger brother and sister was out of control. We were told that once she was officially diagnosed we’d receive appropriate support, which never materialised. In fact, I see it as the “autism help” carrot being dangled in our faces. Help was simply not available, because funding to support services had been cut to the bone. Sadly this continues to be the case, year on year, here in the UK.

After Polly returned to school after the summer holidays in 2015, it quickly became apparent to my husband and I that help would not be coming our way. She was being bullied by several kids and hated her new teacher. We had two choices: fight a losing battle against an unfair system for a substandard education. Or home educate and shoulder the responsibility ourselves. Needless to say we did the latter, and so began an epic journey that had the potential to go either way. If out and out refusal and post-school meltdowns are ruling YOUR life right now, I urge you to properly research the alternatives.

Before the event, home education felt big and scary. Let’s not underplay this, it’s a huge deal. It remains the hardest thing I’ve ever done (and I’ve led a very eventful, colourful life). But it’s also – without doubt – been the most rewarding thing I’ve ever done. Having left school at fifteen myself, without a qualification to my name, I’m not your average home educator. Five years ago, I wasn’t confident enough in my own abilities to believe I could take control of my kids’ education. Now I see that I’m the best person to do so. No longer do I view home education as something we’re being forced to do.

Cards on the table: I used to see autism as a curse

We had a flying start to home ed. Polly flourished in those first few months. I genuinely thought it would be as simple as removing the source of our problem (school), working hard on improving areas in which we were struggling, and boom. Happy family. Turns out, when you have autistic children, there is *always* something else you hadn’t thought of to consider. Small inconveniences, which most kids just accept or hardly react to, have the capacity to cause huge problems for kids on the spectrum. Change of any description can throw their worlds into utter chaos.

When you have one child, you can devote all your parental energy into ensuring they thrive. When you have more, and when they potentially also have additional needs, life can quickly descend into survival mode. Fight or flight becomes the norm. You cry all the tears. All of them. Every single day. It’s very difficult to achieve anything more than the bare minimum. You might have even grown to hate autism (sometimes, at least).

I’ve come to see this as a natural process I needed to go through. In order to get to a place where I’m no longer questioning “why us?” or frantically searching for autism help to solve our problems. Now I have truly accepted and embraced the family I have, I fully trust myself enough to make good decisions for our future. Life is still tough, but I don’t feel broken by it, which is (more than) a huge step in the right direction.

Above all else, you have to let go of the past

All families with autistic children, have a story to tell. No matter how instantly accepting you were of the diagnosis or how much you fought it. Regardless of how well or little you and your child(ren) have been supported along the way. Whether they’re four, fourteen or forty. There will have been tears shed, fists flown, crockery chucked to the ground and at the wall. Food refusal, school refusal, participation refusal. Other medical conditions, allergies. So many doctors appointments. Not to mention the bone crushing sleep deprivation, which has lingered like a bad smell for years. And years.

If we are to truly help our children, we must make peace with whatever has gone on in the past. When the past hangs around our heads, like a noose, it can mean we make terrible choices. Anger, resentment and guilt lead to poor judgement and bad decision making. Which perpetuates the negative cycles we get ourselves into, which end up feeling impossible to break.

autism awareness day 2019

Parental instincts are everything, so why are we brainwashed into tuning out to them?

Our parental instincts are our biggest superpowers. They tell us more about our children than all the so-called experts put together. Unfortunately our ever-busy lives, in this modern world, mean most parents have never been more out of tune with their kids. We’re overwhelmed by all the things we are told we should be doing. Bombarded by social media ramming everyone else’s perfect-looking lives down our throats, making us feel less-than. Making us question ourselves at every turn. Us mums, especially, can feel damned if we do and damned if we don’t.

So what’s the solution?

Learn to trust yourself.

Truly give yourself permission and give yourself the genuine belief that you are capable. In the midst of my toughest times, the first thing I’ve lost has been confidence in myself. Without self-acceptance we will massively struggle in all areas of our lives.

To help our kids on the spectrum, first we need to help ourselves

Much of my parenting journey has been about recognising when I need to change something within myself. If you’ve read this far and all of a sudden you start feeling uncomfortable, that’s a good thing. It means that deep down you know there are things that need to be changed so you can move forward. When we’re busy fighting for our children, we often end up forgetting to look after ourselves. Self-care is vital, but it’s become a bit of an overused buzz phrase. Associated with running a bubble bath, enjoying a cheeky gin and reading a book for half an hour, uninterrupted. As relaxing as these things can be, we all know they won’t change our lives any time soon.

Have you ever taken the time to figure out who you are and what you truly want? Do you have issues left over from your pre-parenting days that you haven’t dealt with? Do you drink too much? Eat unhealthily? Have toxic people in your life? As a society, we are living in the era of mass discontent and disconnect. Digging deep and uncovering why you feel this way will put you in a great position when it comes to autism help for your child(ren). Although focussing on them feels like the right thing to do, if we ignore our own needs for long enough, they will come back to bite us. My lovely friend Sophie runs an incredible support group for women in need of a life reboot. Check out her website for more info.

Find strategies that work for your family

All children (people!) are different, and those on the spectrum are no exception. What has worked for my ten year old daughter might not necessarily work for your five or fifteen year old son. I believe the list below universally applies to all strategies, however, the strategies are going to vary from child to child.

  • Get to know what the meltdown triggers are and work around them (probably avoiding them in the beginning). At one point Polly was so sensitive to water on her body, she couldn’t handle having a bath. I’d have never figured this out if I wasn’t carefully monitoring her meltdowns and behaviours.
  • Consistency is paramount. If something is working, find a way to blend it into every day life and make it a habit. All new things are hard at first, but once we’ve been doing them for a while it gets easier and easier.
  • Don’t make threats, give clear instructions and consequences. Following through with your consequences is an absolute must, no matter how horrendous the fall out might be. Otherwise your words will seem empty and become worthless.
  • Praise isn’t always as simple as it sounds. Some kids bask in the glory of being praised in the traditional sense. Others will feel uncomfortable by it and need it given to them in other ways.
  • Your time is your most valuable asset. Spending time with our kids, without technology or expectations, is exceptionally powerful. Sitting in the living room and building Lego together is a great sensory activity for all ages.
  • Sleep and quality of that sleep cannot be underestimated. I wrote this article about turning our sleep situation around, which you’ll hopefully find useful.

The greatest gift we can give our children

Everyone has bad moods and off days, but if the same issues crop up, chances are the same causes are at the root. Unpicking why our kids are doing the things they do can be the most challenging part of autism parenting. As with absolutely everything else, there is no way you are going to be able to help if you don’t understand why help is required. All too often we blame our kids behaviour for xyz, but when we truly understand that behaviour, we see there is almost always a deeper meaning behind it. Remember, kids who need love the most often ask for that love in the strangest (or outright unpleasant) ways.

Finally, it’s worth mentioning the link between food and behaviour. I’m a huge advocate of eating as naturally as possible and feed my children nutrient dense food. They find life difficult enough to navigate, and if they are not receiving adequate nutrition, everything else becomes harder for them. They fight more, have more meltdowns, are impossible to reason with. They are less likely to go to bed at a decent time and more likely to be up in the night.

Having spent a lifetime recovering from my own dysfunctional, traumatic childhood, I have come to know this, for sure. The gift of wellness is the biggest head start we can give our children.

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