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.

Dear Autism Parent You Are Not AloneLast October, when my family was at breaking point, I wrote a post about autism.

I addressed it to the other mums out there who were going through what I was going through, but it was by no means limited to the ladies. There are plenty of dads feeling the same way too (apologies for any offence caused, it wasn’t intended). 

I have never hesitated as much before pressing publish as I did with that letter, and the response was completely overwhelming. Within two days it had been read by over 50,000 people. I was shocked to discover that so many had identified with my words, because when you’re in the thick of it, you start thinking that you’re all alone, and that no-one else will ever understand.  

I’ve thought about filming a reading of the letter so many times in the last few months, but never got round to it. After a tough week and few glasses of wine on Saturday evening, I took a deep breath, pressed record on the webcam and did it. I start off by reading the letter, then I go off piste and say what I’m feeling.

The video isn’t perfect, it’s raw and rough around the edges. But you know what? My life isn’t perfect – it’s raw and messy and hard. Just like the hundreds of thousands of other families out there, going through unimaginable challenges every single day.  

Dear autism parent, this one’s for you…

I’ve always loved the term ‘prevention is better than cure’ and never was there a more apt phrase to describe my daughter’s sensory meltdowns. In short the best way to avert them, is to identify the triggers that send her into meltdown mode, and prevent them from happening.

It’s been almost a year since our high functioning autism diagnosis, and my hubby and I have been trying to identify P’s triggers ever since. By knowing the things that cause her to feel overloaded, we can ensure that we avoid them or at least keep them to an absolute minimum. During our most challenging times, where sleep has been practically non-existent and I’ve spent all day long putting out mummy fires, there has been little energy or inclination for doing this. It has, at points, felt like an impossible task, but it hasn’t been for nothing. P was having multiple meltdowns every single day just six months ago, and now she only has two or three a week. That is progress you can’t argue with!

As I’m sure most parents will agree, averting a meltdown is much better for the family than having to deal with the fallout during and after one.

How to Avert a Sensory Meltdown in an Autistic Child

Some triggers are pretty obvious – too much screen time, hunger, tiredness, feeling overwhelmed and overloaded. Other triggers aren’t as easy to spot…

Siblings. The biggest challenge in my family is that our younger children (2 & 4) can be triggers for P (almost 7). Just the sound of them making excited noises, or playing happily can send her into meltdown mode if she’s already feeling sensitive. Other times she can erupt in the middle of a game. If the three of them are playing and P starts being overly controlling, then I know I must step in for everyone’s sake. If P is in a pinchy or name calling mood, then it’s vital to separate her from the little ones, give her some extra love, calm her down, and do everything I can to make her happier. If it goes too far and she’s become violent, then the only solution is keeping her away from her brother and sister altogether.

Being ignored. P absolutely hates me looking at my phone for anything longer than quickly replying to a message or checking something online. Feeling like she’s being ignored is a huge problem for our girl, and it’s taken me a long time to come to terms with this. I thought I needed to teach her to have patience, but I now see how much it irritates her, so I was the one who had to change tact. If I have to quickly check something then I’ll announce what I’m doing to make her feel included. If I have to get the laptop out to work then we speak about it in advance, and agree a time limit. Sticking to that time rigidly hasn’t come easily for me, but I’m getting much better at it. 

Water. We figured out that P’s evening bath was one of her major triggers, so we stopped her from having them, and she now has a shower in the morning instead. We have to also limit the amount of time she is in the shower. It’s clear that P loves being in the water, but has issues getting out of it.

Not enough warning. Which brings me nicely to my next point. Switching tasks can be incredibly difficult for autistic children, and P needs lots of notice when change is on it’s way. I saw an infographic recently which likened an autistic child switching tasks to having tendrils pulled of their head. I knew it was bad, but didn’t get just how bad it could be, and it explained a lot!

Over watching. As well as overload triggers, being under stimulated can cause us huge problems too. P scares easily (which is a blog post in itself), and is very particular about the films she will watch. She won’t even watch Frozen because of being afraid of Elsa freezing everything at the start of the film, and the giant snowman in the middle of it. We learnt a while back that when she has over watched a film it will become a trigger, but she’ll still ask to watch it. If I’m aware that a film is in danger of being over watched, I ask about ten minutes into it whether she actually wants to carry on watching or if we should choose something else. Most of the time she’ll tell me she wants something else instead.

Food sensitivities. Then there are P’s many food intolerances, which I’ve written about heaps before. Sticking to a mostly Paleo diet helps keep her level, and we always pay for it on the odd occasion that we don’t. This means her diet is free of all grains (not just gluten), cows dairy and refined sugar. 

It’s worth saying here that all children are different, and will have various triggers, which will probably change as they get older; and as I’ve already mentioned, knowing P’s triggers haven’t completely eradicated meltdowns from our lives. It has helped us immensely though, and hopefully this post will come in handy for someone else, somewhere else too.

Thanks for reading, and very best of luck to you and your family 🙂

An Open Letter to the Parents of Neuro Typical ChildrenDear Parents,

I see you, biting your tongue and trying not to roll your eyes at me. I know you think I’m precious and over the top the way I plan my family’s life to the last second. You don’t think I do myself any favours by saying no to seemingly ‘kind offers of help’. To be completely honest, before our diagnosis, I myself thought I was being OTT most of the time, so how can I possibly expect others to not view me this way? Also I’m probably rather paranoid when it comes to these matters – not sleeping for more than a couple of hours at a time for years on end will do that to the best of us.

The thing is, because your own kids are neuro typical, you could never fully understand what it feels like to walk in my shoes; nor would I expect you to. Parenting is challenging enough, constantly juggling and trying not to drop the many balls you have in the air. I haven’t written this to create some kind of ‘them and us’ divide, really I haven’t. It would be great if a little more empathy was displayed though, because it can feel at points that no matter how much I explain why we do the things we do, I still pick up on these vibes.

As you only see tiny snippets of my girl, you are usually privvy to a perfectly ‘normal’ child holding it all together. It must be almost impossible to imagine her in the middle of a sensory overloaded meltdown, like the ones she was having every single day after school towards the end, that were lasting up to two hours. It’s probably tricky to get your head around the idea of a six and a half year old who often sleeps worse than a newborn baby. One who is capable of turning on her little brother and sister for apparently no reason, and in a split second spitefully cause them such pain. How small amounts of food she doesn’t usually eat can impact her for a week; or how a slight change to the normal routine can throw her little world into chaos. Just because you don’t personally witness it, doesn’t mean it doesn’t happen.

I can’t even articulate the extra weight that I carry on my shoulders, and the agonising that goes on inside my mind. My fears about her future, as if growing up in this world wasn’t going to be hard enough. I try not to let my thoughts drift too far though, for the fear that she’s going to get chewed up and spat back out in the harshest of ways. With all our early intervention strategies I sincerely hope this isn’t going to be the case obviously, but people with no experience of autism telling me that “she’ll be fine” does very little to make me feel better.

I hope this note goes some way to helping you understand us a bit better. Please don’t take offence, or search for hidden meaning behind my words, because truly there are none to be found. I’m not blaming you for your lack of insight into our world. How on earth could I, when I’m still getting to grips with it myself?

Forgive me if I’m barking up the wrong tree, but I’ve been teetering on the edge for quite some time now.

Very best regards,

Reneé
(aka autism mama)

High Functioning Autism, Acceptance and Creating Family HarmonyAhhhhh. The A word.

No, not that one, the other one.

Acceptance.

There’s a lot of It needed when you start factoring autism into family life. It is well documented that all parenting is hard work, but the extra challenges that come hand in hand with additional needs can often push you to breaking point. Then you also have the regular stuff to deal with on top. Which is where the A word comes into effect.

There is plenty that I’m prepared to accept, and some things that I point blank refuse to.

The double edged sword of stimming

“Self-stimulatory behaviour, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders.”- from Wikipedia

I completely understand that P needs to stim, in order to feel calm. I will accept and support and encourage her to do so in a healthy way. Certain stims, such as hand flapping and jumping on the spot, are almost always the precursor to a meltdown. They are a great warning sign for us, because if we manage to distract her away from whatever is causing her irritation while she’s still in the stimming phase, then we have a good chance of averting the meltdown. Always a win.

What I’m not prepared to accept or encourage is what the wonderful Kirsten Lindmith refers to as the Dark Side of the Stim

You might be wondering why a parent would want to ‘train their child’ to be anything other than their natural self, but when their stims involve hurting them or their siblings, I feel it’s my duty to help channel that energy elsewhere.

As Kirsten says in a way that I could never articulate (after all I have less than one year under my belt of officially being an autism mama) not all stims are created equal.

P used to pinch herself, and her brother and sister. A lot, and hard. She would do it in such way that I don’t think she even realised she was doing it half the time. For a long while I was at my wits end about this, but can now see that she was (is) stimming. For years I didn’t understand why she was doing it, and now that I do, I feel quite enlightened.

Play Foam has been a huge winI totally appreciate that she feels the need to pinch, that she’s sensory seeking, so rather than trying to train her out of it, I get her to pinch something else. Anything else. The operative word here being ‘thing’ not living, breathing person. We came across a brilliant sensory toy called play foam, which is thousands of teeny tiny styrofoam balls connected together with a non-toxic glue like substance.

She can pinch it, twist it, pull it apart and fiddle with it until her heart is content. It’s been a huge hit, and we’ve seen a dramatic decline in pinching when she has her little play foam ball at her side. I always make sure she has it with her when she’s watching TV, because at the point where she inevitably starts to get bored (under stimulated) her default is to start pinching.

Licking things in public places

One thing I will never be able to condone is licking things when we’re out. As we’re a non-driving family, we catch a lot of public transport, and every time we do, P will try and lick the rails and windows. Filthy dirty metal, plastic and glass, that hundreds of thousands of people touch every day.

My stance on this has absolutely nothing to do with what other people think of us, because believe me with my history, I genuinely couldn’t care less about what a stranger thinks. It’s also not because I’m a sterile clean freak, seriously you should see my house most days. It’s because autism and a poor immune system seem to go hand in hand. Whilst I actively encourage her to make potions with soil in the garden, and get covered in mud, I’m not so keen on playing Russian roulette with her health by letting her lick things.

The only way to stop her from licking is by ensuring she has activities for the journey that will keep her fully focused. Reading doesn’t work for her at all, as she finds it way too hard to concentrate with so much background noise. Sometimes we play a short travel game such as mini snakes and ladders, but usually we give her the tablet to play a game or watch some TV. This way we know that she’s happy with her end of the deal, and it keeps her frustrations at bay.

Meltdowns

Although they are pretty indistinguishable from each other to the naked eye, a sensory overload meltdown is not the same as a toddler tantrum. A toddler will have a tantrum usually because they are unable to communicate their feelings. An autistic child will have a meltdown when they are feeling overwhelmed by life. This is why we made the decision in November to start home educating, because it was apparent that school was causing P a lot of anxiety and she felt overwhelmed by it.

Since we’ve been at home, we have kept life as low key and trigger-free as possible. For the most part anyway, the couple of occasions that we’ve left the house without a clear cut plan, or stayed out that little bit too late, it has ended in complete disaster. Put simply, it’s just not worth it. So we have accepted that this is the way things will be for the foreseeable future, because if it keeps our lives relatively meltdown free, then it can’t be a bad thing.

trampoline jumpingI’m going to write a more detailed post about meltdown distraction techniques that work for us, but for now here’s our top five.

– Taking P off on her own for some undivided attention (the most effective, but most difficult to achieve, because I’m parenting solo during the week)
– Jumping on the trampoline
– Building a tower out of wooden blocks and knocking it over
– Practising gymnastics
– Colouring sheets

It’s what makes high functioning autism so bloody hard

I always come back to this thought: the higher up the high functioning end of the spectrum you get, the tougher life seems to be for them. P feels the pain and injustices of childhood so much deeper than her peers, but her struggles are invisible to them. Unless she gets overloaded, and then they treat her like she’s a baby.

It’s my job as her mum to equip her with the tools she needs to cope with these feelings, but never ending battles within the home can make it impossible to do anything else but fire fight.

The popularity of my recent post about HF autism parenting leads me to believe that I’m far from being on my own when it comes to my thoughts on these matters. It’s difficult to not end up feeling like a lone voice though, when every other post I read about autism is so shiny and positive. It can make me feel like it’s my attitude that is wrong, and with a little bit more acceptance all would be much rosier. Perhaps the writers of these articles have less kids, or get more sleep than I do, or aren’t quite as broken as I’ve been. Or perhaps they’re just cut from a different cloth to me.

I don’t love my daughter any less because I choose to write about autism in an honest way. I refuse to only write about the good bits, because that is not a true account of what’s going on. This attitude in general just perpetuates the idea that everyone else is doing a much better job and having a much better time than we are.

I will be her biggest advocate until the day I die, and I’ll go above and beyond the call of duty to ensure that she thrives (not just survives!) in this world. I will never stop learning so I can understand my girl as best as I possibly can.

I’m taking a leap of faith that by continuing down this road, we will eventually have a much happier family.