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.

sorry about the noiseWe live in a lovely house on a private estate, and I’m proud to be part of a proper little community. Just like in the olden days, we let our kids play out and at times it can feel as though the only socialising we do is with the people on our doorstep. This is not a bad thing by any stretch of the imagination. We are exceptionally fortunate that many of our neighbours have kids the same age as ours, and lots of us are on the same page when it comes to our outlook on life.

There are of course exceptions to this rule. Like the delightful woman that gave me a character assassination in front of my own children, after a nine hour trip back from Greece last May. Her beef was that we hadn’t informed her in advance that we were having work done on the house in our absence. Unfortunately the workmen had upset her by making a racket too early.

Apparently this was all my fault because I’m “so selfish”! 

She has gone on to complain to us and our landlord a handful times in the last seven months – about the noise levels. Most recently giving my poor hubby a telling off because he had lost his temper and shouted that morning. This woman has one child who has just turned 16, so it’s been a very long time since she’s had experience of witching hours and kids that wake up in the middle of the night. While I don’t care for her one little bit, there is a small part of me that wants to knock on her door and spell out for her how difficult our lives are to muster some empathy.

I want her to know how grinding it is to have a child who pushes you to the end of your tether every single day. How incredibly hard we are trying to stay cool, calm and collected in the face of adversity, but how beaten down by life we feel far too often. And although we are sorry about the noise, it is not at the top of our priority list. We have bigger fish to fry – like getting our daughter to a happier place and helping our family back on it’s feet. 

Oh by the way, did I mention that Polly is autistic? No probably not because her diagnosis came after we stopped exchanging pleasantries.    

I felt so bad for my poor hubby, because I know how hard he’s been trying to not lose his temper. To stay calm and not shout. To follow all the rules and GET. IT. RIGHT! 

Except there is no getting it right is there? All parenting is hard work, but parenting a child with autism is so challenging it’s likely to bring even the toughest of us to our knees

I think it’s too easy for parents to judge other parents. After all they’ve got direct experience of the situation. Or so they think, but they haven’t of course. No-one knows what goes on inside your four walls apart from you and the other people that live within them.  

If you hear shouting and screaming coming from your neighbours occasionally, please don’t assume the worst – that they must be awful human beings who are damaging their children. You have no idea how hard their day has been, and how tough their lives are. 

As for me, I truly am sorry about the noise, and wish it could be a different way.

Really I do. 

One Thing After AnotherI pride myself on my togetherness. My normalness. Some people consider the N Word to be as dirty as the C Word, no not Christmas. I don’t though. With my background, being as normal as I am now is a wonderful thing.

Lately though, I don’t feel very together. I can’t seem to shake my sadness. It comes and goes, and comes back again.

Sadness at the state of the world.

Sadness at what human beings are capable of doing to each other.

Sadness at the big picture.

Sadness at the small picture.

It feels like we take two steps forward and three back where my eldest is concerned, and it terrifies me.

The violence. The spitefulness. The screaming. The pinching. The destroying. The soul destroying.

I can’t bring myself to think about the future because it reduces me tears.

Questions plague me: what if we don’t manage to get her on an even keel? What if it just continues to get worse and worse? What if all the love and good parenting in the world isn’t enough?

What if our family becomes so messed up, and lost among the shouting and throwing and hitting and kicking, that we can’t get ourselves back to happy?

What if we’ve made a huge mistake deciding to home educate

What if so much damage has already been done to my marriage that it doesn’t survive?

These are the thoughts that run through my mind on a loop. Eating away at my sanity and waking me up in the middle of the night when the kids are actually sleeping.

Maybe I’m turning into an emotional wreck?

Maybe it’s the six long years of sleep deprivation getting the better of me?

2015-12-09 08.18.41Maybe it’s because Freddy has been unwell (the pox, poor boy), which has triggered off Polly’s morbid obsession with death that has been apparent since we lost Andy’s granddad? 

Or maybe it’s the relentless one thing after another cycle that our life has been this year? So much stress that I can almost see the god damn cortisol.

I know there is lots to be grateful for. I also know that I’m not a robot thoughI’m not super human. I have my limits.  

So what am I going to do about it?

First and foremost, as I mentioned recently, social media is not my friend when I’m feeling low. I’ve been online less and less these last few weeks and gone entire days without checking Facebook (my main nemesis). This has definitely helped.

Polly declared the other day that she hates me looking at my phone, so this has been the final kick up the bum I needed to completely stop checking it as much during the day. If I miss a blogging opportunity because I can’t answer an email quick enough then so be it.

I’m trying my hardest to not beat myself up and add extra pressure where it doesn’t need to be.

After all these years of doing everything myself and never asking for help, that is going to change. My lovely neighbour has offered to do some arts and crafts lessons at her house, which I’ll be taking her up on soonest. Any offer of the Grandparents coming to help out will be snapped up without hesitation.       

And to end on a positive note, my wonderful friend is taking the girls off our hands this weekend for a sleepover, which will provide a much needed time out. Some breathing space, so we can gather our thoughts and just be for 24 hours.

Only three more sleeps… not that I’m counting 😉 

welcome to the Polly show

welcome to the Polly show

There has been something going on with my eldest daughter Polly since she was a tiny baby. First it was reflux and eczema covering her face – related to reacting to dairy coming through my breast milk. Then came the multitude of food sensitivities which we discovered at two and a half.

A few months previous to that she stopped sleeping (both during the day and at night) and was waking up ten times plus. Even now she hardly ever sleeps through, and she is six next month. On top of all this she never outgrew the toddler meltdowns, and her violent outbursts have been steadily getting worse over the years.

Always something

Something has felt not quite right for a very long time, and I just knew there was more to this story than everyone else allowed me to think.

“She’ll grow out of the allergies, don’t worry”

“She’ll be so tired when she starts school that she’ll start sleeping all night, don’t worry”

“It’s all normal kids stuff, mine fight like cat and dog all the time, don’t worry”

The well intentioned, yet largely unsolicited advice, has been of little comfort to me over the years.

I’m kooky when it comes to my gut instincts, but they very rarely let me down. Last summer P had a whole bunch of gastro tests done, to investigate whether there was something medical going on, but every single one came back negative. It was a huge relief, I had major stomach surgery at 5yo and would do anything for my own kids to not have to go through the same. It left us not really knowing where to turn next though. So on we plodded with the best parenting we were capable of on no sleep, and a diet so wholesome that her teachers regularly comment on how envious they are of her lunch.

Last September I wrote this over on my GAPS blog.

“I’m going to set the cat among the pigeons here. What if her problems aren’t being caused by standard allergic reactions to food, but by a toxic overload and leaky gut syndrome? What if the super clean diet of cooked from scratch organic goodness she has been eating all her life is the only thing saving her from an ASD diagnosis? It’s no secret that ASD and food sensitivities go hand in hand. I’m starting to think that my hubby and I have been tearing ourselves into pieces looking in all the wrong places.”

wpid-img_20150509_103810.jpgChristmas saw my family in absolute dire straights. Hubby and I then went on a mission to try and turn it all around, and totally eradicate our own negative behaviour. Which trust me was bloody hard, but we didn’t so much as raise a voice over the two week holiday. We saw improvements but it didn’t work the miracles we were hoping it would. By Easter her sleep had gone to pot again, and her violent outbursts were getting more frequent and intense. To the point where we couldn’t trust her to be alone with her baby brother in case she hurt him. I conceded that what we were doing wasn’t enough and that perhaps my theory about autism wasn’t so whacky after all. Then I read this post by fellow blogger Reprobate Mum and alarm bells started well and truly ringing.

Our biggest red flags
– lack of empathy
– inability to read body language or communicate non-verbally
– toddler like temper tantrums
– obsessive about her likes
– has to be in control
– incredibly poor sleep

Getting the help we desperately needed

We are lucky to have private medical insurance through work, and jumped the queue massively to see a top specialist at The Portland Hospital two months ago. Dr. K assessed Polly and asked me a million questions, all the time being privy to her full range of emotions. Dr. K told me it would be high functioning, but there was definitely something needing to be investigated. I booked a follow up (again lucky enough to queue jump) and in the mean time had to complete more questionnaires, as did P’s school and our GP. We had the appointment yesterday and went through what the sheets said, and were asked even more questions. Dr. K also got to see the way P interacts with her little brother (little sister was left with the Grandparents).

To be completely honest I think Dr. K had made up her mind about Polly last time, she is a leading expert in autism and sleep disorders after all. The questionnaires seem to be just a formality. We were asked whether we wanted to contest her diagnosis of High Functioning ASD, and see another doctor to have an independent assessment done, but we declined. She was just confirming what we had already come to terms with. Now we have a diagnosis on its way, we can start to access the support our family so desperately needs.

It’s Official. She’s on the Spectrum. Now What?

Why am I writing this and telling the world that my kid is autistic? Quite simply because there is no shame in having a child on the autistic spectrum. P’s condition hasn’t been caused by anything that anyone has done, or could have done differently. There will be no guilt, and there will be no apologising. This is the way she was born and what my husband and I now need to do is start equipping her and the rest of the family with the tools we all need to live a happier life.

Attitudes will only change once people start talking about this stuff out in the open.

I keep hearing the term early intervention over and again, and because she isn’t even six yet I am very hopeful that we will be able to get ourselves to a much happier place fairly quickly. Hubby and I will be tapping into the support networks and parenting groups that will help us do this. You can learn more through the National Autistic Society.

A plea to trust your gut

I’ve also written this as a little plea to parents to trust their gut instincts when it comes to your kids. If you know something is up then fight for an answer, and do not allow yourself to be rail roaded into thinking that everything is fine, when you know in your heart of hearts that it’s not.