Battlegrounds

“I’m scared”, Sawyer’s little voice came from the back of the car. My eyes immediately filled with tears and I did that deep breath and shaky exhale thing that you do when you’re trying really hard not to completely lose your shit. I listened as a deceitful cheery tone forced hopeful words out of my mouth, I switched off the engine and turned around with what I hoped looked like a genuine happy smile.

When I started primary school in the late 80s, there wasn’t a huge emphasis on the transition between nursery/home care and school – you turned up on day one and that was the end of that. These days preschools and primary schools work together to ensure a smooth transition for the children, and the settling in stage is absolute paramount, held in much higher regard than starting any kind of school work during those early weeks. I was around a year older when I started school than when Sawyer did, and I still remember crying fairly frequently for a few days (weeks, Mum??). I think starting school was far more confusing in those days than it is now.

Battle One came before Sawyer had even set foot inside the school, and I’m a bit ashamed to say that I hadn’t expected it. The playground. I had been so busy making sure that Sawyer would know where he would be going and what he would be doing that his sensory issues had escaped my attention almost completely. That said, most of his sensory issues became far more obvious after he started school, so maybe I didn’t fail after all –  and perhaps I should cut myself a bit of slack. The playground was crowded, noisy, children were running around with excitement and parents stood laughing and chatting. It’s a bit difficult to explain, but when Sawyer gets overwhelmed and a meltdown is on the way, he starts to sort of… tick. He will jerk his head backwards and let out a sudden, sharp squeal. And he will do this repeatedly (along with some flapping) until whatever he feels is wrong, gets fixed. Sometimes it escalates out of your control and sometimes you can calm him down before it gets worse, but at that point he was unable to vocalise any issues he was having and so we made do as best we could. I’ll dedicate a post to meltdowns (NOT tantrums!) at some point, but for now let me say that I could tell as soon as we entered the playground that a meltdown was on the way. And so we did what we knew how. We found a corner of the playground, and we sat down on the concrete away from everyone else. We heard the whistle go, ignored it, and with our hands clamped over our ears we waited until the playground had almost emptied. By that point, thankfully, Sawyer had calmed down, and we made our way across and to the door of his new classroom.

Most primary schools seem to phase children in during the first few weeks of school. In order to help with all the new changes they tend to start with mornings only for a few days, then mornings plus lunchtime, and eventually they start to go all day. At Sawyer’s school this was the case, and as well as that, parents were permitted to enter the classroom and help settle their children for the first week of school. During the summer I had been comforted by these sensible steps to helping your child start school life as calmly and happily as possible. What I hadn’t expected was that they would, for Sawyer, turn out to have the opposite of the desired effect. Firstly, trying to enter a classroom filled with 30 children and their parents is worse than battling the the playground: A tighter space, as much noise (if not more) and heat coming from all the bodies being in one small area. I became the official problem parent on day two when I requested that Sawyer be able to bypass the playground for a few days, and enter the classroom from the side door before other children arrived. School reluctantly agreed and as I had suspected, it did the trick. In the days that followed, dropping him off went smoothly and he smiled and waved me off, knowing exactly where he was and when I would pick him up. I knew at the time that this couldn’t be a permanent solution (boy did school make that clear!) but I also knew that if Sawyer could get used to school first without the trauma of the parts he was finding so hard, it would give us a better chance of filtering those things in, and finding ways to help him cope with them. As it happens the playground coping mechanism before school still exists today, and involves us turning up at school at the last possible second, when most of the children have gone in and the parents have started to disappear.

Battle Two came in the shape of the phased sessions that had seemed such a good idea during the summer holidays. I had booked a week off work during Sawyer’s first week of school and so the timings weren’t an issue, but the changes in schedule affected him negatively almost every day. For the first morning, Sawyer went to school 9am – 12pm, but only with the younger children. On the second day he went 9am – 12pm with all the children, and on day three everyone went 9am – 1pm, which included the lunchtime session. Then there were another couple of days doing the 9am – 1pm, before eventually they started to go 9am – 3.15pm. Not only is this phasing-in stage difficult for most working parents (I’m lucky enough to have a fairly flexible job), but for children like Sawyer it has more negative effects than positive. If I had my time again I would try to sort something out so that starting school was a bit more structured from the very beginning. However school can seem quite intimidating for parents too (think about the last time you were there!), and with hindsight I wish I’d spoken up about all the concerns I was having, no matter how much of a pain in the proverbial it would have made me seem.

I would say that reception class was designed to get the children ready for school in a way they hadn’t had access to before. In reception class they focus on things like strengthening hand muscles to help with pencil control, thus setting the foundations for everything they will learn throughout the rest of school life. Reception class had its difficulties for Sawyer but on the whole he coped well with his new life, which had been my biggest concern. In terms of school work, he made slow but steady progress and I quickly  realised that the educational side of school would not be our challenge. At least not for a while.

For a long time I made sure I was early to collect Sawyer from school each day, so he wouldn’t have any extra stress or unanticipated changes to his routine. One day, perhaps 3 weeks after he started in school, I stood in my usual spot in the playground waiting for the door to open. Sawyer was never at the front of the line (it took him a long time to get his belongings together and realise he needed to stand in line), and in the early years of school they don’t release children until they are sure a parent is there to receive them. On this particular day as I stood waiting, I saw Sawyer’s happy little face appear at the door behind the teacher, and I waved of course. As the teacher took each child one by one from the front of the line and passed them on to their parents, I watched as Sawyer, not yet understanding the regimen, slipped quickly behind her and ran across the playground and in to my arms. A lovely moment, he was so glad to see me. But beyond that, if I hadn’t been there? Would he have still ran? Could he be in the road by now? I crouched in a cuddle with him for a few seconds, my eyes on the doorway trying to decide if anyone had noticed his escape. They hadn’t. And so battle Three had began.

Battle Three is still an issue for me, since each and every day I feel I’m the only person to understand how unpredictable Sawyer is. Every day for me is a guilt-ridden conflict between acknowledging potential dangers, yet not wanting to react to his actions in a way that will cause him to be fearful of exploring the world. It’s an impossible dilemma and one that I can only cope with by implementing trial and error as I go along. Thinking out loud, it’s probably my biggest daily battle with life as Sawyer’s Mum, because I don’t know all the answers and I have to let him ride his bike along the path, and run ahead on the way to school, knowing that it could be dangerous, but knowing it wouldn’t be right to stop him being…. a child. The inner conflict is so overwhelming I can’t begin to touch upon it in this post. Another post for another day. We could be here a while.

Year One for Sawyer has been more easy going. For us, it has been more structured and I think it’s the reason he has taken to it so well. When he started year one I though that perhaps reception had been a waste of time, but with hindsight I realise it was probably the most important phase of his life so far. Throughout reception Sawyer couldn’t hold a pencil properly, and he couldn’t read particularly well, yet the very day he began year one, I realised reception had done exactly what it was supposed to do. Suddenly, Sawyer gripped his pencil, and he wrote his name (his name!!). Without warning, he started reading books for fun, and asking me questions about letters and numbers. That’s another thing I’ve learned about Sawyer and his autism: just when you think he’s paying no attention at all, he goes and does everything you’ve been waiting for, and all in one go.

These days he’s doing pretty well in school, and he seems to have made some friends along the way, although it’s difficult to tell since he only ever talks to anyone about Thomas the Tank. I don’t know what the rest of Sawyer’s school life will be like – there is no way to tell. There are some days he seems so different that I can’t imagine how school life will ever be normal for him, and then there are days like today, when he came running out of school hand in hand with his classmate, and the two of them excitedly told us all how they want to go to each other’s houses to play. My hope is that I’ve done enough to ensure that the adults around Sawyer know how to help him, and that with time they (along with us at home), will help the other children to understand too. I don’t know at what point his classmates should be told about autism, but it’s something I think will have to come up sooner rather than later, so that the children can make certain allowances for Sawyer in the same way most adults can and do. It scares me to write that down because it means I need to accept that there will be a next stage in Sawyer’s life, and that at a certain point autism will grown beyond my control. In many ways I will need to hand my knowledge and concerns over to children the same age as my son, hoping for dear life that they will understand and support him instead of ostracising him.

The future has never been more scary, and has never been more unclear.

I can’t bloody wait.

 

 

 

 

Schoolitis

In the 6-week break before Sawyer was due to start reception class, I was anxious about how he would cope and whether he would be able to fit in with his peers. Uniform and books started to arrive, along with the stark realisation that I was about to relinquish some of my responsibilities and hand my son over to someone else for several hours each day. Although Sawyer had been in preschool while I worked part time, I had been on maternity leave with his little sister for almost a year and so he and I had spent a lot of time together. I would miss him.

Although I knew that Sawyer wouldn’t be expected to recite times tables from day one, I couldn’t help but worry about how he would manage academically at school. As a summer-born boy he would already be one of the youngest in his class, and on top of that he had a significant speech delay caused (probably) by his acute inability to sit still or focus. Children younger than Sawyer at nursery had been recognising their own names and some had even made good attempts at writing them down. Sawyer couldn’t tell you what his name was. I would often collect him from nursery and encourage him to tell me what he had been doing, or what he had eaten for lunch etc. There would always be silence. I could ask him a closed question, like ‘did you have a jam sandwich?’ and he might sometimes be able to answer yes or no, but that was as far as conversation went with Sawyer at that time. Any short phrases he used were learned and meaninglessly repeated (echolalia) but at that point there hadn’t been any actual conversation between the two of us. When I was young, my Mum owned and ran a preschool in the town where we lived. I would often ponder the conversations I’d been able to have with children far younger than Sawyer and although all children are different (I’ve heard that a few times!) it was difficult not to compare him, and not to worry about how his difficulties would affect his school life.

I was worried that Sawyer would stand out as ‘weird’ from the start of school, and that the reputation would follow him throughout the rest of his school life. Simple things that other parents wouldn’t even think about when preparing to send their child to school haunted me constantly in the weeks before he started. How would he cope with drinking out of an open top cup? Sawyer lacked the concentration needed in the crucial moments between a cup being safely on a table, and haphazardly pressed to his mouth, causing frequent (constant!) spillages.  By the time most children reach 4, concerns of this nature are usually few and far between, but the magnitude to me was overwhelming. His eating habits were also a concern, as they had been from as soon as he weaned on to solid food. Sawyer knew that he liked certain foods and those foods were (still are) jammed in to his mouth until it was full to capacity. I’ve read that mouth-stuffing is a common trait in children with autism, and that it stems from a sensory issue I am yet to understand. I intend to dedicate an entire post to the issues we’ve faced with food, but to give you the gist Sawyer basically lived on jam sandwiches until he was 4.5 years old. For those wondering, yes, I’m sure he would have eventually eaten when he was hungry, but I wasn’t willing to starve him half to death for a few days before his senses finally told him it was time to eat. Bit of pent up resentment there? You could say that.

I’ve just realised that I’ve identified some of my pre-school concerns as speech, eating and drinking. No wonder I was stressed, they’re pretty fundamental things to be concerned about. I mean when was the last time you went a day without doing any of those 3 things? When was the last time you went an hour without doing one of them? I wonder if it’s a coincidence that those things have jumped to the front of my mind, or whether it was my brain’s way of trying to put things in an order of importance. In any case, my concerns were vast and spanned all areas of school life, from education to friendships, enemies and fitting in. It also occurs to me now that when I thought about Sawyer starting school, I wasn’t only thinking about reception class and how he would find this new chapter of his life – I was thinking about things on a much larger scale. I wasn’t just trying to give Sawyer the tools to cope with starting school, I was trying to give him the tools to cope with year 1, secondary school, work…. life. And that’s how life is for me most of the time. I spend my days thinking about how the way things are dealt with now will affect the future for Sawyer. I try to teach him daily how to adapt to the world around him in the hope that as he grows older he will already have the resources and knowledge to cope with whatever life throws at him and his additional needs.

Sawyer’s first day at school came with a mix of emotions as you’d expect to hear from any parent. It was a strange feeling that my first-born was going in to someone else’s care for such a large amount of time each week, and I knew that I would miss him. The control-freak in me found it difficult to accept that someone else would be ‘in charge’ from then on and I was nervous that they wouldn’t understand him and his issues. One main reason I wanted Sawyer diagnosed as early as possible was so that when he started school they would understand that he had additional needs and not put his lack of concentration and social impropriety down to being naughty. To give you an idea of what I mean by that, when Sawyer was 4 he didn’t like his clothes to get wet, but instead of being able to vocalise it, he would simply undress wherever he was at the time. When he needed a wee, he would pull his trousers and pants down before any attempt was made to find the toilet. His vocabulary was limited and I guess to him these actions seemed like the first logical step in seeking assistance, oblivious to the fact that people were watching and laughing. You can’t help but admire that quality. Sawyer’s diagnosis was the piece of paper I felt I needed so that I could show his teachers why he behaved in certain ways, and why sometimes he seemed a bit… well, weird.

On his first day of school, Sawyer and I had never had a conversation. He had never been able to recognise emotions and if he could, he certainly wasn’t able to express how he felt. Although we had talked at him throughout the summer holidays about starting school, what the days would be like, who the people were and so on, he had only ever repeated my words back to me, and had never shown any signs that he had taken anything on board. Sawyer was un-phased as I attempted to take pictures of him in his school uniform that morning, and he didn’t stay still long enough for me to explain that his water bottle was in his bag, or that I would pick him up at the end of the day. We got in the car and he was his usual noisy, happy self as I started to drive to the school. I asked him some questions that he ignored and then there was a typical period of silence, before suddenly his little squeaky voice came from the back seat.

“I’m scared”, he said.

 

Mighty Misconception

I’ve found that when people question Sawyer’s diagnosis, it is usually down to one of many misconceptions surrounding autism, and my first post was titled ‘He Doesn’t Seem Autistic’ for exactly that reason. Now I come to think of it, common misconceptions were also to blame when I was told by a health professional that we probably wouldn’t get a diagnosis of anything because Sawyer had ‘Too Many Positives’. Wow. Yet again, I’ve sat down to write for this blog and before I’ve managed to reach the end of a paragraph I’ve started to acknowledge things that only become clear alongside a healthy dose of reconsideration.

As it turns out, misconception was a big part of why it took so long to get a diagnosis for Sawyer, and it is still a major issue today. I dare say misconception will be at the root of many other issues we will face alongside Sawyer as he grows up, and it hurts my soul to expect he will then face them alone when he finds himself a grown man. Not to say of course that he wont always have my support (you know me by now), but I simply acknowledge that one day he will be facing these misconceptions in places I wont be, with people who wont know him, in situations I will no longer be able to control. Autism or no autism, he will grow up.

Sawyer was daytime potty trained by two and a half years old. By today’s standards that is considered to be very young, and it was a question that came up time and again with health visitors and the early support team. It was as though Sawyer’s ability to control his bladder was a big red cross in the ‘could be autistic’ column and therefore nobody needed to worry about him. Interestingly, when we finally got as far as the child psychologist, she only asked about potty training after she had given her diagnosis of ASD. If you’re reading this and people are fobbing you off, don’t stop until you find a health professional who asks you questions you feel are relevant. Those people know what they’re doing, and they probably understand what you’re going through way more than you do. Keep moving until you find them. They’re out there somewhere.

I’m about to jump back in time ever so slightly, and I know it’s not the way we should do things, but it’s how my thought process is working today so please join me if you will. I have realised that there was a hindrance in our quest for diagnosis that dated back even further than potty training at his young, beautiful age. Walking. Aged one year and one week (exactly) Sawyer took his first steps in our favourite local pub garden, in the village we live. Like any parents, we were overjoyed, giddy even (!) at those first steps, but little did we know that two years later those fast steps would slow us down. It turns out many health professionals don’t like an autistic child to have walked early. Fast forward back to potty training and there we were with a two and a half year old boy who not only walked at the expected age, he was potty trained! How could I possibly think he was autistic when he was clearly so, so… normal?!

Walking and potty training are important milestones for most parents, with us included. It is only with hindsight that I realise those magical moments went on to inhibit a process that would turn out to be crucial for our son, and for our family. As you know, we got the diagnosis, but the misconceptions didn’t stop there. The one that sickens me most is ‘he’s such a lovely boy though’. He’s a lovely boy… though? Why the though? Autistic children, people, they can’t be lovely? He’s a lovely boy… despite his autism? Breaths, Nic, breaths. I do understand it to an extent. Sawyer is lovely. He is a lovely, loveable, excitable, happy and energetic kid. It might be cheesy to say that he brings colour to a black and white day, but that is honestly how I see him, because you simply cannot be upset when Sawyer is around. My family and friends are reading this and smiling – they get it. Now they’re smiling more.

So, to sum up, I’ve established that Sawyer is lovely. But he’s autistic, so he’s probably a bit violent? No. He’s crazy energetic, but he’s not violent. When he melts down he can be difficult to contain, but he’s not violent. Yet he’s still autistic. Once Sawyer goes to sleep at night (eventually, it’s 9.24pm and counting…) he sleeps like the dead and most of the time I have to wake him up for school in the morning. He’s still autistic. He has had a lot of help at school and he doesn’t under-achieve, in fact he does very well in some areas of his education…. But he’s still autistic. Sawyer doesn’t line up toys around the house, he doesn’t dislike being cuddled, he likes to tell jokes, and he isn’t particularly good at maths. He is still autistic. I will put in to another post a few of the characteristics Sawyer has that are typical of autism, but it was important to me to point out how not every autistic child is the same. No doubt there are many autistic children who don’t potty train until they’re 8, and those who are really, really good at maths. But my son is not one of them. He’s just Sawyer.

I don’t have any control over how other people misconceive autism. And I never will. But what I do have is the ability to bring up my son to accept that although other people might misunderstand him, their opinions will never change who he is. I can give Sawyer tools to help him acknowledge misconceptions of autism, and address them in a way that is helpful to both them and him. I don’t know how I’ll do it, or when. But I’ll do it.

And more than that: I’ll dedicate my life to it.

Awetism

I suppose I don’t think of Sawyer as autistic any more frequently than I consciously acknowledge that he has blue eyes, or that his 3 year old sister whinges for most of the livelong day. So when I put his school bags on the same cushion of the settee every single morning, I don’t really think much of it. And when our usual ‘parking spot’ has already been occupied, I don’t think twice of driving around the village until it’s freed up again.

It took a few years of his little life so far for me to understand in some capacity what sort of things were bothering Sawyer, and how we could adapt his surroundings to make things a little bit easier on him. I’m ever conscious that I don’t want to stop him doing things just in case he can’t cope with the over-stimulation, but I also understand enough about him/autism now to be able to (most of the time) put things in place that will soften the blow if we think he will struggle with certain situations. Many people don’t understand the way I choose to deal with Sawyer’s sensory issues, and I can understand that from the outside, it would seem I am pandering to a picky child. Luckily, the people I care about know me, and they know my son. Those people are my priority.

If there is one thing that will teach you who you no longer require in your life, it’s people being judgemental of your parenting. And when your child is autistic, that is almost everybody. There have been many times when I’ve been told that Sawyer was ‘just being naughty’ and that instead of ‘bowing to him’ with visual diaries and weighted blankets, I should try implementing the naughty step and teaching him right from wrong. These days, those people forcibly exit my life as quickly as they entered because I don’t have time, and I’ve certainly run out of energy. I accept it sounds a little bit harsh, but that is one thing I have to thank autism for. It has shown me who my friends aren’t, and I couldn’t be more grateful.

My friends and family accept that Sawyer has an obsessive nature, and as we all know by now, Thomas the Tank Engine is his number 1 blue ally. In our house Thomas has become our best friend and our worst enemy! Thomas calms Sawyer down and acts as his comfort wherever we go, but that also means that our lives revolve around Thomas, his friends, his sheds, his Youtube videos, his films, and his books. Now, I’ve just typed and deleted the same sentence several times, because it’s difficult for me to put in to words what Sawyer’s obsession is like. Okay, let’s try this: Imagine a child who likes trains. The kid likes trains so much that his parents buy him a train bedspread, and read him train bedtimes stories. For a few months his parents buy loads of toys, films, books, etc. The kid really likes trains. Got it? Okay. Now imagine Sawyer. Sawyer cannot imagine a day when there wouldn’t be Thomas the Tank Engine. If there are no Thomas toys around, he will find anything that relates to Thomas, and he will talk about that instead. When you try to do Maths homework with Sawyer, and you ask him what 3 – 2 is, he answers ‘One! And that’s Thomas! The Number One Blue Engine!’. And it isn’t an accident either. Because he can also tell you the number and colour of every single other engine that features in Thomas’ long history. It’s actually pretty incredible. Sawyer disappears quite frequently in to what we call ‘Thomas Land’, a land in which he is so happy and engrossed that you have trouble trying to encourage him back out. He will sit for a long time all by himself, reciting stories and escaping reality.

What I’ve learned is that the Thomas obsession is far from unusual in children with autism, and these days, it makes so much more sense to me. Firstly, the trains can be categorised easily in to size, numbers, colours and shape. They can be lined up, and they have wheels you can spin. Secondly, after watching one or two (million) episodes, I realise that their expressions are very obviously connected with the given storyline. The faces are static, so they are either happy, sad, cross, angry, etc. Sawyer recognises these faces and connects them to an emotion. I have Thomas to thank for a lot, even though I want to derail him fairly frequently. He helps my son get through so many difficult times, and on top of that, Thomas and his acute understanding of autism has made birthday and Christmas presents incredibly easy to think of for the last 5 years. Thank you, Thomas. And thank you, Autism.

I know I am his Mum, but I think it’s fair to say that everyone who meets Sawyer falls in love with him pretty quickly. Sawyer is a kind and loving soul, trying to make sense of a world that does not understand him. It’s another trait he has that I think will fascinate me for the rest of my life – his ability to see the world in a different way to the rest of us, yet somehow manage to join in. Of course I don’t know how life will change for him, and us, as he gets older, but at the moment I’m envious of the way he operates. He gets to school and kisses me goodbye in the same spot in the playground. He puts his bags in exactly the right place, and he turns around to wave at me. Without even knowing it, he puts things in place that keep him feeling secure and in control, which is more than most adults can accomplish in an entire day, let alone before 9am. Sawyer joins in at school (for the most part) and plays alongside other children, but I’m very aware that children don’t notice the subtle differences at such a young age. When one of his school friends asked me ‘Why is Sawyer so weird?” one day, I wasn’t surprised and I wasn’t upset. I gave her a massive smile, and I told her ‘because being a bit different is awesome’. She smiled back, and she agreed, and off she skipped. Sawyer doesn’t think he’s weird, and he doesn’t know that he seems a bit different. I don’t know if that will change as time goes on, but for now autism keeps him… protected. Ever so slightly oblivious (if that is possible), and I’m thankful for that.

I love Autism. I love it because I love my son. Do I wish Sawyer wasn’t autistic? How could I? Autism isn’t a trait or habit that Sawyer has, it is a crucial part of who he is and whom he will always be. Sawyer doesn’t have autism, he is autism. Being Sawyer’s Mummy continues to bring different challenges each and every day, but autism has become part of my life in a way that means I don’t think about it until I stop and reflect later on. Reflection is key for me. This blog is key. A time where I think of how things went and what I could do better, without beating myself up about decisions I made when something took me by surprise. Yes, Sawyer does things differently to other children his age, and sometimes he does them much later, but that’s okay. I can’t help but wonder if autism has helped me to appreciate the milestones whenever they arrive, in ways parents of neurotypical children won’t ever grasp. And I include myself in this, since I already take for granted that my daughter can whinge out 15 word sentences like it’s a sport, and that she potty trained herself long before she was 2 years old.

Sawyer was 4.5 years old and had been in school for nearly 3 months. He still didn’t say much and he didn’t have the coordination to hold a pencil like the other children. But he had settled, and that had been my aim. On the 23rd November 2014 he hurtled in to my bedroom, ricocheting off of furniture and walls as standard. But whilst he danced his morning jig, I realised that his usual high-pitched voice wasn’t usual at all. It was a song. He was singing me happy birthday for the first time.

Thank you, Awetism. For everything.