Still Too Many Positives

So much has happened for our family over the last 4 or 5 years. Our children have grown older, school years have passed in the blink of an eye, preschool changes have taken place and most importantly: happy memories have been made. Sawyer is growing in to an amazing little boy, with unusually displayed yet prominent signs of empathy, emotion and happiness. Despite the demons he battles daily, Sawyer is polite, endearing and loveable. Many of the traits I feared he might never develop have – with help – started to appear, and many of the aspects of autism I feared seem to have been kept at bay. The struggle of autism and sensory meltdown continues daily, but if I’d been able to see ahead to 6-year-old Sawyer when he was diagnosed back in 2014, I would have been a happy woman. Neither Sawyer nor his autism has ever been the problem in our lives – we’re committed to helping him succeed. The problem is the system that professes to do the same.

In early 2014 my relationship with the Early Support system reached its untimely demise when Brenda told me that in her professional opinion Sawyer had ‘too many positives’ to get a diagnosis of anything. I’ll remember those words until the day I die because it occurred to me then how lucky I was to have other people around me who saw would I could see, and believed what I believed. Of course parents want to be told that there is ‘nothing wrong’ with their child – and if the excruciating waiting list wasn’t enough of a reason to give up hope, then a comment like that would sure as hell shove the nail right in to the coffin. Brenda must have sensed my disbelief at her comment because she quickly clarified that what she had meant was that the support Sawyer was being offered would be the same whether he got a diagnosis or not. It has taken me around 3 years to realise that actually, she was right.

Sawyer is now in Year 2 at school, and simply cannot access the curriculum in the same way his peers can. Although he has reading age of 11, he is considered to be behind with reading because he is unable to discuss the book appropriately with his group once he has finished. I’m reminded as I type that Sawyer learned to read in a way that the school systems fail to cater for. Instead of learning phonics and how to blend words, Sawyer simply remembered the words he had read. He stored all the words up in his brain and he taught himself to read through memory. Thank you autism. And thank you to school of course, because once he had mastered many words, he was then able to access the rules of phonics. My 6-year-old autistic son can read with more passion and excitement than most adults I’ve known in my life. Yet the curriculum doesn’t recognise those positives and his school report still came home stating an underachievement. It isn’t the fault of the teachers who are working so hard to help him – they are already exhausting their resources – it is the fault of the people at the top. The people with the money. They are the ones who refuse to help my son. They are the ones who make the decision that children should be expected to fail before they are entitled to any help. And even when they’re failing, the help may never come.

It took 2 years of preschool, a diagnosis of ASD, and 3 years of school before we had gathered enough evidence to send off for an Educational Health and Care Plan (EHCP). Along with the head of school, his teachers and the SENCO, we put together an application that shows explicitly how much Sawyer needs additional support in school. Case-studies; details of the many strategies that are in place; medical reports; psychologist reports; pictures; photographs; examples of his work – all in there. 5 years – almost the whole of my son’s life – written down, carefully adapted, and printed off in to a neatly labelled folder. Two weeks ago that folder was sent it off to the Powers That Be. Panel took place on the 1st June but it could take weeks to hear back about the decision. If we are successful in his application then Sawyer will be entitled to a sum of money that will allow his school to give him the constant and specific support he so badly needs. But pickings are slim, and I have no faith left in the system. Even if he is awarded what he deserves it could take another 10 months (at least) from now for the school to receive the money they so desperately need.

And so it saddens be to admit that Brenda was right after all. I realise now that autism was never against us, and nor were sensory issues. The school wasn’t against us and neither were his teachers. The issue that has been standing in our way for all this time is the fact that my son is absolutely and completely amazing, without question.

He simply has too many positives.

 

 

 

Click here to read Part I – Too Many Positives

 

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.

 

Sometimes

 

On a school day, Mummy or Daddy (or sometimes Piper) wakes me up and tells me it is time for school. I don’t like being woken up. I’m always very tired in the mornings, and Mummy says it’s because I stay up reading so late. I am supposed to read for half an hour and then go to sleep, but when I close my book I can still see the characters chasing around in the dark. Sometimes characters from lots of different books come out at once, and that is SO funny! Piper never wakes up when I laugh at the moving pictures, because we have shared a room since she was a baby and Mummy says she likes to know I’m there. Sometimes Mummy and Daddy come up to bed and I am still awake. They say that all my friends are asleep already and that if I go to sleep I can meet them in my dreams. Sometimes I do meet them in my dreams! But usually I see characters from my book and we play all night long, so when it’s time to wake up I’m exhausted from playing in my dreams all night.

Sometimes Piper is too noisy in the morning before I’ve woken up properly, and that makes me really cross. Sometimes when people are too noisy I can’t concentrate on anything else and all the colours go dark and gloomy. On days that Piper has been too noisy then usually my school uniform isn’t comfortable, and time moves too quickly. Sometimes Piper is quiet but Mummy asks me do to something in the wrong order, and before I’m ready. Then my uniform isn’t comfortable again, and sometimes it makes my breakfast not taste good. Before we go to school, I like to have lots of notice so Mummy gives me updates every 5 minutes so that I know how long I have left until we leave for school. Sometimes Daddy takes me to school instead of Mummy, but they always tell me the night before or first thing in the morning, because otherwise I don’t feel in control and that makes my uniform feel uncomfortable again.

Sometimes I take a packed lunch to school and some days I have hot lunch. Sloppy foods can feel funny in my mouth and make me sick, so Mummy and Daddy look at the menu and decide if I should have hot lunch or not. The school hall can be difficult for me even on days that I have a packed lunch. The noise can make me feel very anxious and if it gets very bad, my body doesn’t know how to react. Sometimes things get very loud and hot, and my uniform is very uncomfortable then I start to spin around and run and I can’t concentrate or hear specific voices anymore. Often people try to come close to me to make sure I can see and hear them, but it only makes my uniform feel more uncomfortable. Sometimes even my skin is uncomfortable. My teachers give me my ear defenders to wear in the hall, and sometimes that helps me cope with the noise.

After lunch, I don’t always like to sit with my friends in the classroom. There are so many children and it’s difficult to focus on my work. I prefer small groups, and often I prefer to work completely by myself. Some children are very kind to me but some are too noisy and rough, and I find that very difficult to cope with. I am a very polite boy but sometimes I am rude without meaning to be, because I say whatever is in my mind. Once, I ran across the playground so fast that I bumped in to another child and she fell over. I didn’t realise it was my fault so I shouted “WATCH WHERE YOU ARE GOING!” and Mummy had to wait until I had calmed down to explain to me why I was a bit wrong. Sometimes Mummy thinks the things I do are funny, and that makes me smile. My teacher and my teaching assistant are very kind to me too. They understand that sometimes I get very cross but they know me very well now and they know that I am a very happy and sweet boy who sometimes gets overwhelmed and can’t listen anymore. People who understand me make my life much happier. Mummy and my teachers work very hard together to make sure everybody understands me. My teachers help me to learn, even when I do it a little bit slower than some of my friends. Mummy says it’s important to try hard at school but that it’s also important to learn when I need a break. She says that learning is important, but that being happy is even more important.

When Mummy picks me up from school, I am always very happy to see her. Sometimes I have my coat fastened with my hood up, even when the weather is sunny because I am scared to leave it behind. This can make me feel overwhelmed so Mummy takes the coat off and holds it for me so I don’t get too hot. Mummy usually picks me up in the car because she drives straight from work, but sometimes she walks instead I get really confused and tell her that my legs are too tired to walk home! I love getting home. It is my favourite place to be and I would like to stay there every day if I could, even at weekends! Home is very safe and doesn’t confuse me very much. I get straight home from school and go on the iPad to play Thomas the Tank Engine Roblox. Thomas is my favourite, although I really like Spongebob too! My teachers draw Thomas and Spongebob during my free time at school. I’m allowed to play the iPad until dinner time and then I have to come to the table and concentrate on my dinner. I used to be very sensitive to dinner times but now I find it easier because the rules are very clear. I don’t have to eat all of my dinner but I do have to try it, and there is always something on my plate that I definitely like, so if I don’t like the rest then I still have something nice and safe to eat.

After dinner I like to play with my trains in my bedroom. I like to play with my sister too, but mostly I like to be by myself. Other children don’t always play my games in the right way and that can make me pretty cross! Sometimes at lunchtime in school if the order doesn’t go properly then I get very confused and stressed. I have been known to hide in bushes to get away from it all when things go wrong. But luckily I have very kind teachers who understand and help me calm down. Sometimes I get overwhelmed at the weekends too. Birthday parties can be very confusing for me, especially if they are very loud and I get too hot. I have friends that I have known since I was a baby, and their Mummy always checks with my Mummy to see if a party will work for me or not. People who understand my sensory issues are my Mummy’s favourite type of person, especially if they bring wine.

Before I know it, it is bedtime again! I like bedtime because it is always the same. In my bedroom I have a weighted Thomas blanket and an elephant light that shines stars on my ceiling. I lay on my big bunk and read my books. Sometimes Mummy and Daddy call up to tell me to read them a little bit more quietly because I love to shout my words out! I love reading, and I am very good at it. But sometimes when I close my book I can still see the characters chasing around in the dark. Sometimes characters from lots of different books come out at once, and that is SO funny! Piper never wakes up when I laugh at the moving pictures, because we have shared a room since she was a baby and Mummy says she likes to know I’m there.

But that’s just sometimes.

 

 

 

 

Unfair Dismissal

 

This afternoon I was stood in the kitchen buttering rolls, when I asked my youngest, Piper, to lay a blanket out on the floor ready for their ‘picnic’. She was tired and hungry, so when the familiar whinge reply came back at me I rolled my eyes and buttered on regardless. But as I heard her get up from the settee to fetch the blanket, the whinge turned in to the sound of genuine devastation. “Why do you always ask me and not Sawyer? I want to watch my telly as well.” she sobbed as she straightened the blanket out on the floor.

The words came out of her mouth and made a beeline for my heart. She was right. I do always ask her to do things instead of asking Sawyer. If I’m in the bath and I forget my hair wrap, I call her to fetch it for me. If I’m making dinner and my phone beeps in the other room, I ask her to bring it to me. And when we’re running late for school because Sawyer has left his bag in the other room, it’s her I ask to retrieve it. Why? Because it’s easier. For me. I’m ashamed to admit that to myself, and even more so typing it out in black and white for everyone to see – but I’ll never figure out how to change my behaviour unless I first accept wholeheartedly that I’ve been fucking up. And so, I got down on the kitchen floor and I apologised profusely to my 4-year-old daughter.

By the time Piper was born, we already had a pretty good idea that Sawyer was autistic, yet strangely it had never occurred to me that any subsequent children might be too. I don’t know if that is because the section of my brain labelled ‘Autism’ was already at capacity, or whether denial was preventing me from thinking that far ahead, in case the world (or at the very least my sanity) imploded. Unlike her older brother, Piper was a fairly textbook toddler. When she started to cruise the furniture I didn’t feel the urge to throw myself off of the nearest cliff, and when she started to walk I didn’t cry as I chased after her behind tobacco counters and restaurant kitchens. She just walked . I suppose by the time it occurred to me that our future children might also have autism, it was already clear that Piper did not. We often joke that if Piper had been our first child it would have been much easier to describe what was different about Sawyer. And it would have almost certainly  given the situation more gravitas when we took it to the NHS (doctors are allergic to first-time parents. Symptoms include eyebrow arching and head tilting – fascinating stuff).

As Piper started to get older we were able to do all the things I felt I had missed out on with her brother. We walked by the road holding hands, we sang songs complete with corresponding actions, and we laughed at jokes. Although she was the youngest of two, she quickly established herself as ‘mini mother’ to Sawyer, opening bottles and containers for him, helping when he spilled a drink and trying to teach him to skip and whistle. I don’t know when or how it happened, but I suppose I lost grasp of how little she was. To me, Piper was a prodigy. The frame of reference I had for her was derived from raising my wonderful and kind-hearted, very loving, very autistic, son. When she was smaller she took great delight in being ‘grown-up’ enough to help me around the house, which I just was not used to. But as every mum knows, the days their children ask to help with the housework do not last long – otherwise living with teenagers wouldn’t be quite so difficult, now would it? But as the novelty wore off for Piper, the expectation level remained the same for me. Although I never expected her to boil her own potatoes or go out and sweep chimneys for pocket money, I was giving her lots of tiny, unnoticed and simple tasks, which just was not fair – since her brother was almost never asked to do the same.

Piper gave me a big hug on the kitchen floor and as all small children do, forgave me without reservation. I explained why I had been wrong, and promised her that I would make sure I share out the chores equally from now on. She ran off happily to her programmes and as I plated up their food I berated myself for my short-sightedness. I have spent time researching the issues that siblings of autistic children face, and I pride myself on being aware of the extra sense of responsibility they might feel as they get older. I take the time to explain Sawyer’s behaviour to her, and we have good, healthy conversations about that. I try to make time to spend just with her, so she never feels overshadowed, and I consider myself to be fairly tuned in to the issues and problems each of my children face every day. But it turns out that my 4-year-old daughter is more intuitive than I am. As we sat down on the picnic blanket, Sawyer straightened out his corner and Piper remarked what a good job he had done all by himself. And again,  she was right. Sawyer is perfectly capable of laying out a picnic blanket. It might have taken a little longer for him, but he could do it. And so today I owe both my children an apology. By constantly giving the small tasks to Piper instead of Sawyer, not only have I burdened my daughter, I have been taking away my son’s opportunities to learn. Instead of allowing him to try and fail, and spill and break, I have held him back just ever so slightly, but in hundreds of tiny, unnoticed fragments.

Today my 4-year-old daughter showed me how wrong I have been, and how I can help her grow up alongside her autistic older brother. I have been wrong about many things today, but one thing is for absolute certain.

That girl is a fucking prodigy.

Letting Go

One of the most difficult parts of being Sawyer’s Mummy has been trying to find a balance between ensuring his safety and ensuring that my own anxieties never stop him from living as normal a life as possible.

Until Sawyer turned 5, whenever we went out walking we largely confined him to a buggy board attached to his sister’s pushchair, because he was still too erratic to trust alongside busy roads. As he got older I was acutely aware that the buggy, along with its board, wouldn’t be with us forever, and that we would need to find alternative ways to keep him safe. Of course his peers had been walking (even cycling – the horror!) alongside their parents for years by this time, and I knew I could not keep him strapped to me forever.

On the way back from the park one day, I had Sawyer step off the board so I could get the buggy up a high curb. I waited until he was up on the far side of the path before negotiating the buggy (complete with small child, shopping bags, snacks and other general mum paraphernalia) up the curb. 2.5 seconds later I turned my head to the empty space where Sawyer had been, catching  only a glimpse of his bright blue coat out of the corner of my eye. I can only describe the feeling as horror, as I watched a car approach and swerve, narrowly missing my baby boy as I stepped out and yanked him back to safety. I loathed myself. And even more than I loathed myself, if at all possible, I loathed autism. Being a mum of two young children is bloody hard work – yet even the bits that should have been simple were a fucking nightmare. In true ‘me’ style, I waited until I was safely home before I went to the bathroom and burst in to tears.

Autism and anxiety often seem to go hand it hand, and although I wouldn’t say it is one of our biggest issues with Sawyer, it certainly plays its part. Sawyer finds it difficult to understand figures of speech, and for a long time that was a source of his anxiety. I’ll never forget for example, one Sunday afternoon in our local pub when my sister was asking Sawyer not to drink all of his juice in one go. She smiled as she said to him innocently, ‘Don’t drink it all in one go Sawyer, you’ll go bang!’ Not one of us could have imagined the reaction she would receive. He took it so literally that he genuinely thought if he drank his drink too quickly, he was going to explode. I actually laughed while typing that, but Sawyer certainly didn’t find it funny at the time, and nor did his poor old auntie, who undoubtedly wished she could wind back the clock and say something much, much plainer. With hindsight, in another situation he may not have reacted that way to those words at all. We were in the pub with some friends he did not know too well. It was a hot day in summer and he had been running around outside with unfamiliar sounds and smells. If we’d been at home in the kitchen, would he still have taken that harmless phrase so literally? Would he have even noticed? It’s impossible to tell. But what I do know is that it scarred his auntie for life.

I’d never really thought about my own anxieties surrounding autism until a few years ago, when one of my oldest friends decided to send her son to a childminder instead of preschool. We had boys of the same age and I remember thinking how homely his childcare seemed, and how lovely it was that he was considered part of a family – a home away from home. They often went out to toddler groups and soft-play sessions, and I was happy they had found a childcare scenario that worked well for them. Yet in the back of my mind all the time was a niggling anxiety, knowing that I could never give the same to Sawyer. You see, when I dropped him off at preschool, I needed to know he was staying in the same place. Soft-play sounded wonderful, but I didn’t feel I could trust anyone else to take my son out in to the world without me. How could I go to work and not know his movements at every moment? What if they underestimated how reckless he could be and before they knew it he was gone? And there lies a perfect example of autism and anxiety going hand in hand – only the autism was in Sawyer’s hand, and the anxiety was in mine. Fast forward several years and I rediscovered that familiar sick feeling in my stomach when Sawyer was due to go on his first school trip. The school were informed and prepared for him, he was excited and ready to join in, yet I was an anxious mess. So what did I do? I told him how excited I was, and I masked the fuck out of however nervous I  was feeling. Or at least I hope I did.

Letting go of Sawyer has not been easy, and I don’t think for a moment that I’ve relinquished my anxieties surrounding him and his autism completely. I’m not so naïve to think that I can tidy my anxieties away and live freely forever because, okay, I’m not autistic – but I am human. Autistic or not, we all have our own vices, sadness, problems, issues and anxieties that we’re trying to battle and beat.  I still feel that underlying sense of panic whenever he goes on a school trip, but you know what? I don’t want him to fear the unknown any more than autism already demands of him. I want to make sure that I don’t allow my insecurities to become tangled up in his own and make his life even harder to lead than it already is, and might be.

I feared I would lose my first born that day he ran out in to that road. And although it amounts to one of the worst days of my life so far, I have found solace in what came after. Realisation. I realised that I wouldn’t and couldn’t have done anything differently that day, and that I had put every reasonable thing in place to ensure the safety of us all. And it happened anyway. And from that I realised that I simply cannot control everything. My son deserves a chance to experience the same opportunities as his friends, without me intervening for the sake of myself. I of course make reasonable suggestions to his teachers if I feel it is necessary, but after that I kiss him at the door, wave goodbye and go about my day. Easy? No. Anxious? Maybe.

But that’s my own cross to bear.

Lemon Squeezey

My name is Nicola and I’m a fixoholic. I don’t mean that I like to tend to leaky taps or spend my time super-gluing old toys back together (that’s what my Dad is for) but rather people, and their broken situations.

Sawyer is now six and a half years old, and dealing with his sensory issues and meltdowns only becomes more composite as time goes on. As a serial fixer, it can be difficult to understand why suddenly and without warning, techniques we’ve been using successfully for weeks and months suddenly don’t do the trick anymore. Autism – how can you be so fickle? How can the symptoms you provoke demand such routine and stability, when the treatment you require is so changeable and complex?

When I started writing this blog, I wanted to tell my story out of frustration for the common misconceptions I’d been facing for so long. But as I continued to write I realised it seemed to be helping people along the way, which, as a serial fixer continues to appeal to me and encourages me to keep on writing, even when sometimes I don’t feel I have anything worth saying. I guess I hadn’t anticipated that my words would help not only other Autism Warriors (PLEASE remind never to be that twee ever again), but also my own family. I never stopped to think about how difficult other people close to Sawyer must have found his diagnosis and all the unknowing that came along with it. It was actually the response from my own flesh and blood that was incredible to me because I realised then how fixated I had been for so long, and how I had expected people to understand Sawyer, without ever explaining what exactly had been going on.

My name is Nicola and I’m a fixoholic. I like to fix people and their broken situations, and for those reasons, I never like anyone to see the times when I feel broken myself. I have fought hard and I have done well; I am proud of the way I fight for my son, but with autism, every day doesn’t just get better. Some days get worse and some days get a LOT worse before suddenly things seem to click in to place again. And then click out of place just as quickly. The hardest part of being an autism mum is reaching a point where you think to yourself I JUST DON’T WANT TO DO THIS ANYMORE, but you know that giving up isn’t an option, and that a rest will probably never come.

I end most of my blogs with a sincere air of confidence and determination, which I hope each time will inspire others to gather their own confidence for whatever issue they are currently facing. But you know what? My blog endings don’t always reflect the endings of day-to-day life. Many of my days end with a defeated face-rub, a headache, exhaustion, and almost always wine. But feeling exhausted is okay. Being a warrior (damn it) isn’t always about gun blazing and anger-wielding. It is about sometimes feeling beaten, tired, achy and sad, yet still getting up and getting the fuck on with it.

You aren’t on your own. And neither am I.

Sense of Impending Weirdness

I suppose the most frightening part of having an autistic child is not knowing what they will be like when they are fully grown.

Sawyer is an extremely loving and kind-hearted boy. He is well liked by his peers, despite not having formed any close relationships with anyone in particular, and as well as that he seems to be a bit of a favourite with the grown-ups. I think the latter is largely due to his unusual enunciation, and his way of expressing approval that you don’t usually hear from children. Sawyer didn’t form meaningful sentences until well after he started school, but before that he had coined phrases by way of echolalia – meaningless repetition of words and phrases. Two and a half years on, the echolalia that used to feel sad and empty now partners with his vast vocabulary and those traits merge to form the most delicious outbursts of love, agreement, disgust and happiness. It is amazing that the very things that make dealing with autism tricky, can later become part of making it a joy to behold.

Recently I sat down with Sawyer’s teacher and we discussed how he was getting on in school both academically and socially. She is completely accepting of Sawyer and his condition (always a relief) and tries lots of tactics and methods to encourage him to engage in all aspects of school life. We started speaking about a plan of action for the coming few months and one of the issues I raised was that at a certain point, not too far from now, I want to explain to Sawyer that he has autism. While he is so young, his peers aren’t noticing the unusual traits that Sawyer has in both his speech and behaviour. At the moment it goes relatively unnoticed that he is the only child in the class who has to run back to say goodbye to his teachers, give them a hug, kiss them on their stomachs, and tell them with a tone of devastation, that he ‘will miss them SO much’. But those children wont not notice forever. And I need to prepare him for that.

As well as Sawyer being made aware that he has autism, I am adamant that his classmates should be a part of the process. As they grow older together, these children will need to learn to have patience with Sawyer, understanding that although he sometimes acts a strange way, there are reasons behind it, and things they can do to help. I don’t mean for a second that the children should be told to pander to Sawyer’s every whim, I simply mean that they should be given the opportunity to understand autism, and be educated on what it means to feel the way Sawyer feels each day. With that in mind, I will start the process of involving his younger sister at the same time. Sawyer gets a pass when he goes in to sensory overload – but she wont. We have to be aware that she has grown up every single day with Sawyer by her side, and I don’t want her to suffer long-term repercussions because she believes it to be the norm. I sound like I know it all, don’t I? I don’t. I don’t know yet quite how to implement any of this, and how it will work – but I know for definite that it’s the next learning curve we need to take – educating children (including my own) so that they have the opportunity to be compassionate, and grow in to compassionate adults.

My husband and I recently sat down to watch a programme called The Undateables – a documentary series about disability and dating. Many of the ‘undateables’ had psychological disorders such as Tourette’s Syndrome, OCDs and Autism, and although the title gives a negative view from the outset, I hope made an audience realise the difficulties some people face in situations that others take for granted. It was the first time I’d considered what Sawyer might be like as an adult. Would he have the same issues that so many of these people were having? Will he be difficult to date because he can’t sit still long enough to get through 3 courses, or because he can’t look anybody in the eye? I realise more and more even as I type, that I will need to look at Sawyer’s gorgeous childish traits and think to myself – I need to help him to change that, and show him how to act in a more appropriate way. As he gets older, I need to open my eyes just a bit, and start to think of positive ways to help him integrate in to society, thinking not only about how he acts now as a child in year two, but how the way he acts might stay with him through to teenage years and beyond. Again, I don’t yet know how I will achieve any of this whilst also allowing him to maintain the parts of him that make him so… Sawyer. But we will get there.

Jumping back to my discussion with Sawyer’s teacher – she paused as she drew near to the end of our discussion. “It makes sense that his peers should recognise that Sawyer isn’t just….” And without hesitation, I helped her with a word she didn’t feel she was allowed to say. Weird. At first she looked mortified (people generally do) but after a short time looking at the seriousness on my face she seemed to realise that I hadn’t said it to be flippant or disrespectful, but that I don’t see it as a bad word at all. My baby boy is brilliant. He is hilariously, quickly, erratically, ever so slightly weird. Thinking about it,  I’ve always found it interesting how words can carry such different connotations for different people. I remember once having an argument with my 6th Form Head of Year after he overheard me using a swear word as an adjective. ‘Why do you find it so offensive? It’s only a word, I don’t understand how anybody at all could ever get pissed off at a tiny little word’. I was 18 years old and I still mean it, only now that word (f**ky) has changed to ‘weird’.

I just do not know what Sawyer will be like as an adult. I don’t mind him being weird. In fact, I quite like it. But what I have an obligation to do is ensure that I teach him enough of ‘normal’ and ‘socially acceptable’ to keep him safe and allow him to live an enjoyable life as he gets older. I want to make sure he has the tools to form a close relationship with somebody, if that’s what he wants. I want to make sure he understands friendships so he never ends up alone. I want him to have all the opportunities other people have, and since at the moment his main ambition is to work at our local Aldi, I’m quite excited about the employee discount.

My Sawyer doesn’t act the same way or do the same things as most of his peers. He doesn’t like birthday parties, he doesn’t like roast dinners, he doesn’t want to go to the park, and he definitely doesn’t like it during the summer when he has to wear short sleeves instead of long. But most joyously, he has no inhibitions. And when I stop to think about it, I guess maybe it’s all because he’s never slowed down enough to pay attention. Sawyer has always been running too fast for society to catch him up and mould him, prod him, and squeeze him in to something he was never meant to be.

And you know what? Thank fuck for that.

I If I Only Had a Heart

I’m not sure if I was excited or nervous when I finally heard his little feet on the stairs body ricochet off every wall on his way from his bedroom to the living room. I was sat in quiet reflection with my tiny newborn sleeping on my chest, and with one almighty crash, there he was.

Sawyer burst through the door and in his usual routine, without looking up, started to make his way across to the room toward my place on the settee. “Morning Sawyer!” I sang as he approached. In the moments that followed, time seemed to forget itself and I watched in slow motion as he glanced a double take at the baby in my arms, changed direction and continued about his day. My heart broke in two as the familiar feeling of guilt washed over me. I simultaneously berated myself for the fact Sawyer had been completely unprepared for this major adjustment to his life, and reassured myself there had just been no real way of preparing him.

That first day home as a family of four unfolded more positively as the hours passed. I wont lie, that afternoon took a lot of ‘gentle, Sawyer’ and ‘slowly, Sawyer’ but on the whole it wasn’t nearly as bad as I thought it might have been. I had spent months scared by a memory of when I was about 18 weeks pregnant with his sister, when I had taken him to a toddler soft play session. As was often the case, Sawyer was overwhelmed, reckless and unstoppable as he chased around the room Tasmanian Devil style. He didn’t understand for example, that children mustn’t take their drinks on to the soft play mats, but since I couldn’t explain these issues to him in the traditional way, he simply went in to meltdown mode as I took the cup (not even his) away. I’m acutely aware that it sounds like nothing more than a normal toddler tantrum, and I’m reminded that I must write a post dedicated to the difference between a tantrum and sensory meltdown. In any case, he ran over to a newborn baby car seat, and within a split second had ripped the fleecy blanket from within and thrown it behind him in a spin. Thankfully there had been no baby inside, but nevertheless my heart raced straight up and in to my mouth. This is going to be a nightmare, I thought. And with that in mind, it was a relief to reach the end of that first day feeling positively surprised when Sawyer went to bed typically easily, and happily.

The weeks that followed were as tough as you would expect with two small children to look after, and arguably a little bit tougher with Sawyer being more active than your average 2-year-old boy. But as for him accepting the new baby, after that first day it was a non-issue to the point that I started to wonder if perhaps he wasn’t seeing her as a person at all. With a complete lack of interest/intrigue on his part I started to ponder whether he was accepting this new addition as an inanimate object rather than as a human being to love and cherish. And that made sense to me, as to why gaining a sibling seemed so easy for Sawyer, when all advice states how difficult it is. After all,  it must be rather difficult to feel jealous of a table leg. Jokes aside, I always explained to people that Sawyer was ‘far too busy to notice’ that he had a new sister, but I’m not sure I ever believed that. And I constantly wondered whether he had accepted his new baby sister with commendable ease, or whether he simply was not seeing her as human. I added that to the long list of questions I believed would never be answered, and I carried on with life in the unknown.

After having my youngest, I left hospital at such speed that they hadn’t had a chance to perform the standard hearing check. In order for them to discharge us quickly I agreed that we would make an appointment at our local health centre to have the test carried out at a later date. The letter came through a week later and so with husband, toddler, baby, changing bag, snacks, pens and toys in tow, off we went to her appointment, running smugly on time. We had attended the same appointment for Sawyer when he was a baby and so we knew exactly what to expect this time around (baby stays sleeping calmly in car seat; nice lady performs test; we leave). If someone could point out exactly where my brain was that day, I would be interested to hear. I suppose as a new mum-of-two, I had gone to that appointment in blissful ignorance, not yet knowing quite how logistically impossible any kind of children’s appointment would ever be again. And I had my husband with me! WHY DID WE ALL GO? I digress.

In the little room, Sawyer was noisy. Of course he was bloody noisy, he was(is) always noisy! We tried to keep him quiet for a little while, but he was simply to loud and active for the health visitor to concentrate properly on the test, so I suggested my husband take him outside the room for a few minutes whilst we finished up. Hubby dutifully obliged and they calmly and quietly left the room. Presumably you’ve been reading my blog long enough to know that my life just doesn’t work that way, and my previous sentence was an absolute WHOPPER. Sawyer screamed and kicked, threw himself to the floor, and wailed in what can only be described as complete desperation. I ran after them to calm him as I could hear him screeching through tears ‘OH NO, BABY! BABY!’. Frantic, he tried to dash past us, in to us, behind us, round us, in to walls, his eyes wide with fear and his limbs crazed with helplessness. There was no calming him and the only thing I could do to keep him safe was scoop him up and hold him for a few seconds until I heard my name gently called from inside the room to say our daughter’s hearing was normal. As we went back in to the room, the stress visibly left Sawyer’s little body and he raced to the car seat, attempting to collect it up himself to ensure we could not ‘forget her’ again. He kissed her forehead and refused to let go of the handle until she was safely inside the car.

As I drove home, my mind span around with everything that had just taken place. I wondered if he had truly believed we were going to leave her behind and that he would never see her again. Why, when he had paid no real mind to her since she had been born, did he suddenly seem so sad to leave her side? Could it be that he did understand that she was family? 

And then I found hope. Perhaps he can learn to love a table leg after all.

 

Un-expectancy

The first thing I felt when I stared at my positive pregnancy test was guilt. By that time, Sawyer was 1 year and 9 months and was taking up every inch of my time and energy day in and day out. What if someone were to happen to me during childbirth and I left him without a Mummy? What if I couldn’t give him the attention he needed once a brother or sister came along and took up a big portion of the time I’d always allocated to him? How could I possibly have considered bringing another child in to the world when my heart was already so full of Sawyer and my mind was so full of everything it meant to be his Mummy?

At that point I was member of an online forum, filled with other mums, expectant mums and their experiences. Alongside the steady stream of invaluable information each day came, as you would expect, competitiveness and judgement. Shortly after finding out I was pregnant, I remember lurking on threads where the topic of conversation was scathingly similar to my own situation – it isn’t unusual on parenting forums to find other parents with a small age gap between children. One comment, unfairly to both the person who posted as well as me, still rings in my ears and pushes my heart downwards. Her eldest son was 4 and her youngest was around 2 years old. I remember feeling numb and disbelieving as she decided merrily that a 2 year age gap was perfect because the toddler is able to help you with simple tasks like bringing you a nappy and fetching the wet wipes. She happily described the way her son had helped her out at such a young age. I looked up from my screen and called Sawyer’s name in sing-song tone. Nothing. I tried again. Again, nothing. “Sawyer, do you want some chocolate?”. Nothing.

We found out we were having a little girl during a private scan when she was around 17 weeks gestation. By that point the initial feelings of guilt had lessened and I realised that we were about to give Sawyer the greatest gift of all time. I am 1 of 4 siblings (two crazy sisters, one crazy brother) and I cannot imagine what life would be like without them. Having siblings, to me, is like having friends that you know will have your back no matter what crazy shit you do to get yourself in trouble. My husband and I had started to get excited about the prospect of having a little girl, and so began the process of baby clothes, blankets, breast-pads, overnight bags and tens machines. When the kicks began, I knew we were exactly where we were supposed to be, and already I loved that baby girl with such inexplicable fierceness.

A few weeks later, I got chatting to a colleague who I don’t chat to all that much – we work in a big building and his lab is two floors up – but when we do chat, we always have an express catch-up effort. His son is a few months younger than Sawyer but it was obvious from the way he spoke that developmentally he was far ahead. He asked me something that I would come to hear a lot over the months that followed: “How does Sawyer feel about having a baby sister?”. I explained through false smile that Sawyer was far too active to stop and listen to us talking about anything in particular, and that he didn’t really understand he was having a sister at all. It was a sugar-coated version of the some truth, but I would say it was about 95% sugar. The truth was that I hadn’t even attempted to explain to Sawyer that he was getting a sister, because there would have been as much point as explaining it to a brick wall. He simply did not have the ability at that point, to listen to a conversation or understand anything other than very clear and simple instructions. I started to think about all the books I’d seen in the past – children’s books designed to prepare a toddler for their new baby sibling. I started to think back to when my sister had her second son and she and his Dad put a gift in to his moses basket ready for his big brother to find, both of them hoping it would help their eldest son understand that the baby was a friend and not foe. These things sound so small and unimportant, but for me they are added to my long list of opportunities I was never afforded when so many others were, and still are. I don’t resent anyone. But it is a bitter pill to swallow when you realise you are living in a world where good advice and common sense are simply not tailored to fit you.

My pregnancy with Sawyer had been difficult, and so my pregnancy with Piper passed with comparative ease. Before I knew it the cot was set up, my bags were packed, and I was already starting maternity leave. Although the excitement had increased immeasurably as the weeks passed by, I still had an underlying yet overwhelming feeling of guilt that plagued my days. My biggest neurosis was leaving Sawyer when I went in to hospital to have his sister. At first we planned to take him to Grandma’s house for the night but somehow the thought of him being sent away and not sleeping in his own cot (yes, still cot – where he stayed until he was 3) devastated me, and it wasn’t until I called my Mum and burst in to tears (I don’t do that often, so people generally shit themselves) that we came up with a solution I could cope with. I was at the end of day 2 of labour, exhausted, and Mum was coming to the hospital with us to act as my birthing partner. She would come over with Dad, and he would stay with Sawyer (who would already be in bed) whilst we went and delivered his sister. We got to hospital at around 10pm and our daughter was born at 12.56am. I refused pain relief of any kind and the real reason was that I didn’t want to risk anything slowing down the labour. I had already told the midwife that I wanted to be home before Sawyer woke up, to keep things as normal as possible for him, and despite her assumption that I was joking, that is exactly what I achieved. I thank Sawyer for getting me through that labour – he gave me the strength and determination I needed to get the job done and go home. And home is exactly where we went, 4 hours after my long-suffering and awesome Mum saw ‘THE HEAD, IT’S A HEAD!!” for the very first time.

I had worried so much about how I could possibly love another child as much as I loved Sawyer, and how she would possibly find an equal place in my heart. What I didn’t realise is that they wouldn’t need to share at all. The second I met my baby girl, my heart widened and both children took equal place, naturally. Easily. When we arrived home, I woke my Dad up mid sleep cycle and I still remember the pale and confused expression on his face as I told him the baby was downstairs. He then spent hours washing up and making tea, periodically appearing at the door, staring at this gorgeous new baby girl and stating ‘I can’t believe it’, as my husband and Mum slept next to me on the sofa. But I could’t sleep.  My mind wouldn’t let me rest until the final piece of the puzzle had been fitted.

Sawyer.