Sense and Sensory Ability

It is 7pm on bank holiday Sunday and I write this post from the comfort of my living room. The doors and windows are open, and I can see the sun starting to hide itself behind the foliage at the end of my garden. Days like these in the UK are few and far between, and a sunny bank holiday – even in late May – is an anomaly. So here I am sat in shorts and t-shirt, with a welcome evening breeze sliding through my home, bringing with it the scent of a dozen local barbecues, and the sound of happy, relaxed, satisfied laughter.

Sawyer had a hard week at school. It was the last week of half term and historically he starts to collapse emotionally during the final week. I suppose it could be down to any number of reasons but most likely it’s a mix of them all. The last week of a half term is often arranged slightly differently than standard weeks, and I think he struggles to accept the disruption. Don’t get me wrong, these changes are handled incredibly well by his school and he is given a lot of notice and preparation. Nevertheless it seems to affect his sense of security, and more often than not it results in daily meltdowns. On top of this, like most children (and teachers – am I right?!) Sawyer gets tired as half term approaches. And when Sawyer is tired, all of his other senses seem to be thrown completely off course, and the meltdowns become all the more prominent. And Sawyer is tired most of the time. Because Sawyer cannot get to sleep.

It is now almost 9pm and only two short paragraphs have managed to escape my fingertips. Sawyer is currently howling in his top bunk, and his sister wails out of frustration from the bunk below. They are hot and bothered. Five minutes ago Piper called down to ask for Sawyer’s ear-defenders, which for a few moments I thought was an incredibly perceptive observation to make about her older brother and his sensory issues. However I think I jumped the gun slightly, since her motive was not entirely selfless – she simply wanted to wear them to block him out. Perhaps I should order an extra 3 pairs. We have tried everything to help Sawyer drift off to sleep at a reasonable hour. From light displays to music, to white noise, weighted blankets, lava lamps, and beyond. His brain simply will not switch off. The worst part about his inability to drift off to sleep even when he is supremely tired is that on school days, of course he needs to be awake by a certain hour. We become trapped in a catch-two situation that I haven’t yet found a way to out-manoeuvre. He stays awake late because he cannot wind down, and then he is tightly strung the next day because he is so tired.

This weekend we had planned to take the children to the seaside. We can reach our favourite beach in less than 2 hours, and with the weather so uncharacteristically pleasant, we thought it would be a treat for the entire family. Unfortunately Sawyer has found it so difficult to cope with ordinary situations this week that on the day, the thought of taking him to a packed seaside town filled me with dread, and we eventually decided to give it a miss. I spend my life trying not to avoid situations because of Sawyer’s autism and associated sensory issues. I fight a battle with myself almost daily, trying to decide if I’m being overprotective, lazy, emotional or naïve. This weekend I decided to admit defeat and we settled for a walk by the river instead. I’ll be honest and admit that I sulked for a fair amount of the afternoon, mourning the loss of my fish and chip lunch. But I had an epiphany as we stood smiling and waving at the people sailing by: Manchester lost children this week, and mine are both here by my side. Autism might be inconvenient, but I don’t know what I would do without it.

Sometimes I forget the extent of Sawyer’s sensory issues. I forget that simple things we all take for granted can make him feel scared and confused, or sad. This week has been hotter than any of us are used to, and where most of us sit back and revel in the warmth, for Sawyer it is just another sensation that he needs to battle. Sawyer cannot easily pinpoint his discomforts; rather they blend in to one. He cannot easily differentiate between tired and hungry, and hot and cold. I suppose it must feel a bit like when you’ve got an itch somewhere but you can’t work out where it is. It drives you crazy and it consumes everything until it is rectified.

This weekend Sawyer has worn his ear defenders more than he ever has before. When I bought them for him a few months ago I was adamant that I only wanted to use them if absolutely necessary, because I of course want to avoid anything that puts yet another barrier between my son and the rest of the world. But interestingly, what I have learned this week is that those ear defenders don’t just help when a situation is too noisy, they help when another sense is taking over and he doesn’t realise it. Today he was getting too hot and uncomfortable as we walked along the river, and the ear defenders helped. It seems that sometimes if we can reduce one of his senses, the others don’t appear quite so overwhelming to him. If we manage to catch the subtle early signs that he is feeling overwhelmed, perhaps this will be our way to further reduce the meltdowns he endures.

As I sit here enjoying my wide open windows and summery breeze, I remind myself that to Sawyer, the windows being open is just a way of allowing extra sounds to invade the place he feels most safe. The smell of coal on a barbecue is appealing to almost everybody, yet it is unfamiliar and disruptive to him. I can hear the neighbours chatting and laughing in their gardens, and their contentedness is so infectious to me. But to my 6-year-old son, the very same sound is repugnant and unnecessary. It simply has no place.

Autism keeps me on my toes and forces me to constantly learn and adapt. Basic tools are readily available for parents of autistic children, but the truth is that you have to just do the best you can do with what you’re dealt with at the time. There are no quick fixes and obvious answers. You know what? Sometimes even when there are good suggestions, you just aren’t willing to hear them because you’ve spent the entire day (week, month…) just doing your best. It genuinely is an exhausting and relentless education. Last year I realised that sometimes Sawyer’s biggest meltdowns stem from something as simple as hunger, because in unusual circumstances he cannot differentiate one unpleasant sensation from another. A couple of months ago I realised that holding Sawyer in a firm embrace for a while can eventually calm him down. And this week I have realised that dampening-out one of Sawyer’s senses helps him to better manage the others. It is an exhausting journey, but there is no alternative when you are determined to guide your son toward living as happy a life as possible. Sawyer’s autism isn’t going anywhere, after all.

And lucky for Sawyer, neither am I.

 

The Parent Trap

Marriage is a funny concept when you stop to think about it. Strip away the legalities and the love, and you’re basically left with an agreement to spend the rest of your life desperately trying not to kill another human being. Perhaps that is why, traditionally, people get married before they have children. Perhaps it isn’t so much about religion and chastity, as about the chance to practise being legally bound to somebody that you genuinely might accidentally kill.

A day or two after Sawyer was born, a stark realisation washed over me: that what we had done could not be undone. Staring at his little face in the middle of the night, milk leaking from each of my nipples and deep grey puddles beneath each eye, I realised that Lloyd and I now had this inexplicable responsibility for the rest of our lives. And although that prospect terrified me to the core, I do also remember feeling a connection with Lloyd that was unlike any other I’d known. We were bound, truly, forever. Not by a verbal, or even written contract, but by shared love and protection of another human being. We were no longer her and him. We were Mum and Dad.

The early Sawyer days were both exhausting and exhilarating. We would go on long family walks pushing him in his pram, sit in pub gardens enjoying the sunshine, and have friends and family over to snuggle with him whilst we made dinner. He wasn’t a velcro-baby like his sister turned out to be 2 years later – he would happily kick about on his play mat for hours, giggling and cooing like a cartoon. Looking back, Lloyd and I were smug. Having our first baby had not put the immense strain on our relationship that you hear about so frequently before you have children – in fact the opposite had happened. We were stronger. Happier. Sawyer and I were lucky enough to spend a summer and a winter together before I went back to work in early 2011. As many of you will know from my earlier blogs, it was around that time that I started to notice some subtle differences in Sawyer’s behaviour, and it is at that point in our history that an invisible yet poignant line has been drawn. First there was a life before Autism, and then there was life after.

I don’t think the full pressure of parenthood really hit us until our daughter was born in December 2012. Sawyer was two and a half and the process of potty training had begun. Meanwhile, my beautiful newborn daughter would not sleep unless she was on my chest, and her greatest hobby throughout the day was screaming for her Mummy. She would not take a dummy, nor a bottle, and she would not go in to a pram. On top of those usual parenting issues, Sawyer, as we know, was incredibly hard work by that point. Suddenly and without warning, the relationship that Lloyd and I had been strengthening was put under intense strain as we muddled through in the dark, sleep deprived and stressed.

  1. Take one painfully tired female with leaking nipples and a sore vagina.
  2. Add one sleep-deprived male.
  3. Confine them to a bedroom for a few hours during the night
  4. Stir in one grizzling, moaning, sniffling, stirring, crying, coughing, screeching baby
  5. For maximum effect, serve alongside a hyperactive, autistic toddler.

I can’t speak for Lloyd, but it certainly took me a good few months to stop wanting to rip his face off when he swanned cycled off to work at 8.30 each morning.

I suppose all parents go through the rollercoaster of emotions that comes with the changing dynamics of a growing family. I certainly don’t wish to downplay anyone else’s parenting experiences (unless you’re going to tell me you found it easy, in which case you’re simply not welcome here). But I will admit that the added stress of knowing something wasn’t ‘normal’ about Sawyer, and the constant underlying burden of needing to find out what, was something I hadn’t been prepared for. I’m not sure anyone could be. That said, there are many issues that parents face that we have been lucky enough to avoid. I never had postnatal depression, for example. I didn’t have any major complications during their births. Lloyd, despite his insistence on BREATHING at 3am each morning, was, and still is, a very good and hands-on dad. There are couples, and single parents (shout out to you), who go through far more traumatic experiences than we did, and I will always be glad that the affliction Sawyer was dealt with is autism and not something more sinister. My son will be fine, and others are sadly not so lucky. What parenting an autistic child has taught me is that we parents could all stand to be a little kinder to each other,  since nobody truly knows what is going on behind closed doors. Do I have a hard time of being a mother of autism? Yes I do. But would it be fair to assume I’m having a harder time that any other parent? Would it fuck.

Our children have now grown that little bit older, and the tensions in mine and Lloyd’s relationship have lessened considerably. Eventually Piper learned to sleep, which gave us back those crucial few hours rest each night, and although we will never have that same respite from autism, we have learned to fit it in to our daily lives, and in to our marriage. It would be a lie to say that Sawyer’s additional needs haven’t been a source of conflict in our relationship, and an even bigger lie to say they never will be again – but like all parents, we make the best decisions we can at the time and we hope that we’re making the right ones. Nothing will test a relationship like having children, and for us autism is just part of that. As well as being married to each other, we are married to autism.

And some things will just never change.