Innocent Until Proven Autistic

I would imagine that guilt is something that heavily affects every parent of an autistic child. And I can say that with a fair amount of confidence, since I can’t remember the last time I didn’t feel guilty.

When Sawyer first started cruising the furniture and turned in to a beautiful little devil child, I felt guilty that he had made our summer holiday less relaxing for our friends. Like all my close friends and family, they accepted Sawyer for who he was and loved him unconditionally, but that’s easy for me to say now it’s being said with retrospect. At the time, when you’re living it and feeling the fact that your son isn’t acting like the other children his age, you just don’t have the ability to detach yourself from the situation and look at it from a reasonable perspective.

We’ve already talked about how I now look back on that holiday and realise I was seeing first signs of autism in Sawyer. You know that I can now recognise that the way he reacted to the sudden change of routine and surroundings was pretty textbook for autism. I can now associate his inability to keep still, sit or nap with sensory overload, and I understand that it must have felt completely devastating to his little 10-month-old mind. But would you like to know what I put it all down to at the time, bearing in mind that autism/ADHD had not occurred to me in any way? I put it down to the fact that I had gone back to work the month before. I put it all down to being my fault.

When I found out I was pregnant in May 2012 the guilt was overwhelming to the point that it completely clouded any feelings of joy or excitement for a long time. (Naturally I feel guilty for saying that. Are you starting to see how this works?). Sawyer was almost 2 when we found out he would be getting a baby sister, and I couldn’t fathom how I would manage to love anyone else as much as I loved him. Would I have to share my love out from now on? How would I possibly love my second-born as much as my first? I felt guilty that my first-born would have to share his parents, and guilty for feeling scared about how I would feel about my un-born.Of course when it came to it, it worked out just the same way it does for anybody who has more than one child – the love didn’t share out between them at all – but my heart got bigger.

Throughout my pregnancy, Sawyer couldn’t talk to us about how he was feeling, and he didn’t have the capacity to sit and listen to us explain things to him. He didn’t sit long enough for us to read any books about baby siblings, and he wouldn’t understand what a new baby gift was all about. Should I have taken him to more mother and baby classes when he was tiny? Should I have persevered and insisted he sit whilst I read books to him as a toddler? Perhaps I didn’t speak to him enough as he was growing, and that’s why he has such a speech delay. I spent a lot of time back then trying to work out what I did or didn’t do that had meant Sawyer was so delayed in some aspects of his development. It was confusing to me that he had hit so many milestones at around the expected times, yet his language and communication was so bad. I concluded back then that it had to be my fault in some way. I mean he was fine as a baby, wasn’t he?

Later, whilst we sat on that soul-destroying waiting list for diagnosis, my focus moved from how I’d managed to break my son by not reading to him enough, to what I had done during pregnancy that had made him autistic in the first place. I must have rattled a million ideas around in my head trying to make sense of why this had happened to him. I still enjoyed the odd glass of wine here and there throughout pregnancy with him, and I definitely ate soft-boiled eggs. Perhaps my baths had been too hot, or I shouldn’t have flown to Egypt in my second trimester. Strangely, I was so caught up in wondering how I had broken Sawyer that I sailed through my second pregnancy with relative ease. I acted much more instinctively, did what felt right for me and my body and didn’t spend (have) the time to do very much else. I just didn’t think that much about the fact that I was pregnant, and of course, I feel guilty about that now.

These days I have a very different relationship with guilt, but it is definitely still there, bubbling under the surface and attacking on the challenging days. And I find that guilt leads to guilt, so once it grabs hold of you, you’ll pretty much belong to it until something positive happens and allows you to make a break for it. For example, I feel guilty when Sawyer is invited to birthday parties because instead of feeling excited for him, I worry about how he will cope with the sensory overload. If the party goes well and he has a good time, I feel guilty that I doubted his strength and if it goes badly, I feel guilty that I allowed him to be put through the stress of it all. It has occurred to me (and by that, I mean it literally just occurred to me) that actually what I feel guilty about these days is that I’m making it all up as I go along. I don’t know if letting Sawyer play with Thomas toys all day is the right thing to do, or if I should encourage him to do something else even though he wont enjoy it. I don’t know if avoiding certain social situations is the right thing to do or if I’m making it worse for next time. I don’t know if I’ve done enough at school to ensure he is being afforded the same opportunities as the other children in his class. I don’t know. 

I’ve come to accept that guilt is not going to go away, in the same way Sawyer isn’t suddenly going to stop being autistic. I’ve learned to cope with guilt by acknowledging it as a normal part of the process, and by looking back on all the things I felt guilty about that now seem laughable to me. My current battle is feeling guilty that I look forward to my daughter growing up Neurotypical. I look forward to normal parents evenings, play dates and birthday parties. I look forward to taking her to busy shopping centres without worrying about how she might react to the noise and bustle, and I look forward to having conversations that don’t have to revolve around Thomas the Tank Engine. I look forward to all the things that other parents take for granted, and I feel guilty for being excited about them. But I also accept that in a few years, I will look back on these feelings of guilt and I will smile about how I felt guilty for no reason.

And I’ll probably feel very stupid for assuming that a teenage daughter would be easier to cope with than an autistic son.

Pity Party

 

It’s like this: The build up to diagnosis feels a bit like climbing a really steep hill, without knowing what you will find at the top. The whole way up, you know which direction you’re aiming for, but you have no idea what is waiting for you, or how you’ll feel when you finally reach the top. You climb for so long that climbing starts to feel like walking and the higher you get, the less you remember about what life was like when you were still on the ground. If you’re lucky, when you reach the top you will find what you had been hoping for. You’ll be exhausted from the climb, but you will feel like it had all been worth it, and you’ll start to plan what life will be like when you find your way back to the ground again.

It’s also like this: Life immediately after diagnosis feels like you have reached the top of the hill and found what you were looking for, but before you have a chance to process what happened, someone pushes you off the edge of the cliff. Without warning, suddenly you find yourself floating completely alone, in an expanse of water so huge that you can’t begin to imagine which way you should swim first.

It took me a couple of weeks to find my purpose again after Sawyer was diagnosed. Numb is probably the best way to describe how I was feeling, closely followed by confused, guilty and alone. Now by alone, I don’t mean that I wasn’t lucky enough to have a great support system in my family and friends (I was), only that I didn’t have anyone who could understand exactly what I was going through. I was lucky enough to have plenty of people around me who would listen to me talk about Sawyer, who would hug and reassure me, and whom I knew would love him unconditionally. But I didn’t know anyone who had been told their young child was autistic, or could advise me on what to do next. And so I did what I had felt like doing for a long time, but hadn’t been able to do – I threw myself a pity party. And I sulked.

The funny thing about time spent sulking is that it does tend to be rather reflective. I had spent a very long time disallowing myself to process any feelings, or slow down long enough to think about the gravity of what was going on. I suppose it’s fair to say that I didn’t feel like I could think about the future until we had a diagnosis, which would also account for my absolute obsession with making sure we got one sooner rather than later. I admit that it sounds a bit strange now even to me, since Sawyer didn’t magically change when we finally got the piece of paper that said ‘ASD’, yet diagnosis had felt like a massive brick wall in the distance, with the future of my family hidden behind. Once the wall came down, I started to see glimpses of what life would have in store for us, and for the first time I realised – I was scared.

A multitude of emotions and thoughts washed over me during the time I spent in Sulk City. I suppose the feeling that acted as the engine for all the others was an overwhelming sense of fatigue. Imagine it like this: you have to stay up all night at work for the most important project of the year. You attack it enthusiastically, fuelled by coffee and the adrenaline buzz of the 9am deadline that you have to meet. 8.55am and you don’t even feel tired, in fact you feel amazing! You meet the deadline and make your way home from the office. Coffee wears off. Adrenaline fades, and suddenly you’re alone on the train trying desperately not to fall asleep before you reach your stop. Who knows where you could end up?

With hindsight I had taken on a lot over the years. I was a mum of 2 small children, and my youngest had taken a liking to waking up at 4.50am. Every. Single. Morning. My eldest demanded more energy than most children his age and in order to feel less guilty about being a working mum, I had taken on the role of Chairperson at his preschool playgroup. On top of that I had planned our wedding almost entirely by myself, the whole time pretending like everything was a breeze. When I look back now I think a lot of the decisions I made in the run up to Sawyer’s diagnosis were driven by guilt. I had taken on more responsibilities both in work and out, and although I wanted to do all of them, it’s an overpowering feeling to believe that you aren’t doing a particularly good job of any of them. I was too focused on Sawyer’s diagnosis to commit my full self to work; I had too much work to allow time to Chair the preschool effectively; I was too busy with all those things to spend as much time with my friends and family as I would have liked. I became the person who cancelled stuff, and I hated it.

The strange thing is, at the time I didn’t actually feel like I had too many responsibilities, despite feeling a bit drained. I just thought I was rubbish. My friends would tell me (still do) that I was taking on too much and needed to give myself a break, but I refused to listen. I think that truthfully I was taking on more and more tasks because I didn’t want to slow down and feel like I wasn’t doing enough. If I had gaps in my day then surely that would mean that I was being lazy when I could be dedicating that time to getting Sawyer’s diagnosis more quickly. Guilt. After feeling guilty about my ‘failure’ to get a diagnosis for so long, finally we had one. The coffee wore off, and I just wanted to go to sleep and sulk, but not necessarily in that order.

This next bit is difficult for me to write, but I feel like it must be said. I can’t imagine I’m the first person to ever feel like it, but I’ve never heard anybody admit to it, so deep breaths, once it’s said it’s said: In the weeks following Sawyer’s diagnosis, I felt like I was mourning the loss of a son I would never know. Done, said. Now please don’t misinterpret what I’m saying. If someone had offered to take Sawyer away and replace him with a non-autistic version I would have grabbed hold of him and ran away so fast you wouldn’t have seen us for dust. I wanted my son. The only son I had, and the only son I would ever have. What I was mourning was the loss of my son’s normal childhood (let’s not forget that Sawyer was still only 3 years old at that point). I had no idea if he would ever speak properly, make friends, go to birthday parties or enjoy cake (he still hardly ate anything). Thinking further in to the future I didn’t know if he would ever be able to endure a trip to the cinema, or go ice-skating. Would he grow up and find girlfriends, or be able to drive a car? I felt like my opportunity to raise a ‘normal’ son had been stolen from me, and so on top of feeling exhausted and scared for his future – I was angry.

Once I’d done as much crying, sulking and shouting as felt necessary, the pity party was over. I tidied up my mind and did my best to put guilt, sadness and anger back in to their boxes. What right did I have anyway? I had a healthy, amazing son who was happy, safe and loving. I’d had my time to grieve, cry, scream and shout but that couldn’t last forever, could it? I had a job to do. Sure, one task had been completed, but the work was just beginning.

 

Diagnosis.

We weren’t kept waiting long, which was a good thing since the waiting room was stifling and Sawyer was fighting his way in to any adjoining offices that had unlocked doors.

When the paediatrician came in to the waiting room and introduced herself, I was pleasantly surprised. She had an air of calmness about her that I found infectious. It’s amazing how the way a health professional comes across to you in that first meeting can change the way you feel about the appointment that will follow. Particularly when you’re at an appointment for your child. There is something quite heroic to me about someone in a position of authority, well educated and experienced, who also manages to put you at ease with unspoken kindness. She asked us through to the office and we dutifully followed – all 5 of us, including Sawyer and his little sister.

When we arrived in the office there another lady waiting. She was introduced to us as Emma, but I can’t remember what her job actually was. I think my sister will, and she will be writing a blog for us soon, to give a different angle of this part of Sawyer’s story. I do know what Emma’s role was during that meeting, and it was to observe and interact with Sawyer. Simplistically, her role that day was to offer him toys, ask him questions, watch how he moved about the room and assess him as she did so. In the mean time Dr Waters asked us about Sawyer and made notes on everything we said. She gave us the opportunity to voice our concerns, and then asked questions that allowed us to elaborate. I’ve already given you a catalogue of issues that we were concerned about with Sawyer, and we basically detailed all of those concerns that day. I did most of the talking, my husband filled in the gaps, and my sister offered input whenever she felt we weren’t able to say exactly what we needed to say. As parents, that can sometimes be difficult and it helped to have an outside view. Throughout the appointment there were pauses as we all stopped to watch Sawyer play. He acted, well, exactly like himself. I remember feeling both relieved that he was showing signs of the very things that had brought us to that appointment, but also sad that I already knew my suspicions were correct. At that point it dawned on me that what I wanted more than anything was a diagnosis of autism. I realised that what I desperately wanted was for this doctor to tell me that I wasn’t crazy, that he is showing signs of autism, and that he wouldn’t just grow out of it. Suddenly I realised that I didn’t fear autism at all – I feared they wouldn’t be able to see it.

There are two things I remember distinctly about the way Sawyer behaved in that office. The first is that I recall in detail how Sawyer saw a set of Thomas the Tank Engine trains up high on a shelf. He had pointed up at them and made some sounds to suggest he wanted to play with them. Emma spoke to him with the tone you use to speak to any 3 year old, asking if he would like her to get the train set down. Sawyer stood up, raced over to her as she sat on the floor and, as though she were a ladder, used her to climb up closer to the train set. I remember thinking that he had just done something so textbook for autism, and hoped that they would recognise it as a marker. Surely they would be able to see that he just used that woman as if she were an inanimate object? Surely they are trained enough to see the signs? Still, even then, I had no idea if they would.

The second thing I remember about how Sawyer behaved that day was when he noticed his sister playing with one of the toys. The toy was sort of a wooden abacus-style frame, with strings of metal beads hanging from the top. She was now around 18 months old and was sat on a little chair next to a little plastic child’s table (incidentally Sawyer hadn’t recognised these objects as things to sit on/at, rather as obstacles in his way). At the point she caught Sawyer’s attention, the toy in question was on the table in front of her, and she was waving her hand through the metal beads, exploring what they felt like and how they reacted when she moved them. Sawyer showed an interest and Emma sprang to action, asking him if he would like a turn. ‘Yes!’ he exclaimed, excited, immediately climbing up on to the table and attempting to crawl past the metal beads, and through the frame. He simply had no concept of how toys were ‘supposed’ to be played with.

About 45 minutes after we walked in to that room, Emma and Dr Waters said they would leave the room for a short time to discuss what they had observed. By this point I felt incredibly numb. My mouth was dry and didn’t seem to be connected properly to my brain anymore. Suddenly I felt very, very tired. When they came back in to the room 15 minutes later, I had no idea what they were about to say. Dr Waters started by detailing what they had observed, but she paused for a moment. She stopped herself to double check that we already had some idea of what she was about to say. I knew then that she was judging what we expected to hear (or not hear) and deciding how to phrase the diagnosis based on that. And so at that point, I already knew what she was about to tell me. The actual words are a blur, but finally, 2 years after those first signs and 12 months after I started trying for a diagnosis, we got one. Sawyer was diagnosed with Autistic Spectrum Disorder (ASD) on that day in July 2014.

We walked back through the hospital on our way back to the car. Sawyer was, as always, unrelenting in pursuit/escape of something none of us could depict. He ran headlong down the corridors, not noticing the people who were forced to dodge his approach. When we got to the car park I was forced to catch up to him and scoop him up kicking and screaming. I remember my sister trying to calm him down, speaking to him in simple language and explaining why he needed to slow down. I felt guilty then that I hadn’t afforded him the same time and energy. But I dealt with him day in and day out. Not only that but I was usually on my own with the two children, and daily life didn’t allow for a sit-down session with Sawyer every time he did something like this – which was all the time. Sometimes instead of talking it through and doing things the way I knew I was supposed to, I needed to scoop his sister up on to my hip, grab him by the hand, and pull him to where we were going, not letting him go until we were somewhere safe, where it didn’t matter if he ran out, or decided to hit the ground screaming.

That little meltdown on the way out of hospital reminded me why I’d fought for his appointment. I could now teach people the difference between a meltdown and a tantrum, explaining that he won’t just grow out of it. My child has autism, and he will always have autism. I got home that afternoon, cooked dinner, read stories, and put the children to bed as I always did. Only when the house went quiet did I start to realise that the purpose I’d had over the past 12 months had found its end. We had a diagnosis; I could call Brenda from early support and tell her she had been wrong. I could give people a reason for Sawyer’s strange behaviour at soft play, at birthday parties, and in shopping centres. I can’t deny that it was a huge sense of relief, and more than that, for the first time I allowed a little voice to tell me ‘well done’. I had done a good job, hadn’t I? I fought for this and I’ve put so much in place to make life easier for him. So why suddenly did I feel more lost than I was before? I guess that before that day, the goal at hand had been to get the diagnosis I knew he needed.

So what the bloody hell was I supposed to do next?

Too Many Positives

In January 2014 we were told that Sawyer was 9th on the waiting list to see the paediatrician. Still, nobody could give us an actual date and time, but it was reassuring to know at least that we were definitely on a list to be seen. I continued to call the child development centre daily, and had regular conversations by email with the secretary, who seemed as desperate to get Sawyer seen as I was. I’m not sure whether it was because she empathised with my cries for help or if she was simply so fed up with seeing my name flash up on her screen that she was literally trying to get rid of me as quickly as possible. Either way she was always reassuring, and I believed her when she told me that if any cancellations came up, she would call me straight away.

Meanwhile, I continued to research autism and the different sensory issues Sawyer was facing. An appointment was made with Occupational Therapy, albeit a long waiting list (shocker) and Brenda from the early support team was still observing Sawyer at nursery as well as visiting us occasionally at home. Nursery had implemented visual timetables for Sawyer, and they had already started to take little trips through to the adjoining school, mostly when the classrooms were empty, preparing him months in advance for his transition in to school. Starting school will be another blog post on another day, but I will say this – the extra preparation paid off. If you are a parent of a child with or without a diagnosis, don’t feel like you can’t push for extra help for your child in the run up to starting school. Sawyer had extra visits to classrooms, he met the teachers many times in advance, and we spoke constantly about school life. The school gave us pictures of his new teachers and created a storyboard for us to take home over the summer holidays, so that we could talk about what a school day would be like with him. I would say that Sawyer integrated in to school life about as easily as any of the other children in his class, and I put that down to the combined effort of nursery and school (along with our own work at home).

At the beginning of 2014, our youngest was just over a year old. The differences between the two children were, and still are, remarkable. Our youngest started to crawl at around the same age Sawyer had been, and just like him, a few months after that she began to cruise the furniture. But unlike Sawyer had been, she was already cautious, methodical, comparatively calm. You could already see her assessing a situation before she committed to anything, deciding whether she would be able to balance on a certain piece of furniture or if she had better find a different way around. She would sit at the table and enjoy playing with her dinner, crawl around after her older cousins, giggling at them, and tantrum if you told her ‘no’. She could nod and shake her head, point to objects and was already starting to form very simple sentences, stringing a couple of words together when she needed to. ‘No ta’ was a particular favourite of hers whenever you had asked her to do something she didn’t want to do. Sawyer was now over three and a half and although he was still slowly finding more words, he couldn’t string together a proper sentence, relying mostly on 2 or 3 words at a time. I began to worry about how other children would accept him at school if he couldn’t communicate like everybody else. He was still unstoppably fast and didn’t take much in. His obsession with his little sister had continued and they were still inseparable. In short, he was making slow progress, but the autistic tendencies, OCDs and sensory issues weren’t going away.

Brenda from early support came to visit us at home one day at home and as usual we chatted about Sawyer’s development – in particular, things that had worked and didn’t seem to be working for him. I told her that I was expecting to get a paediatrician appointment through any day and her reaction was as surprising to me now as it was then. I still don’t fully understand it. Just to recap, Brenda had been a teacher for many, many years before she went in to working with children with extra educational needs. She knew her stuff, had helped recommend different routines and objects (weighted blankets etc) and she had worked with nursery to ensure these things were implemented there too. So I was shocked when she turned to me and said that she thought the paediatrician appointment was ‘pointless’ and that in her professional opinion she didn’t think he would get a diagnosis of anything, because he had ‘too many positives’. Too many positives? What does that even mean?! And when did anybody ever say that he had any negatives?! I must have looked as shocked as I felt, since she then fumbled a bit before clarifying that she meant their support would be the same whether he got a diagnosis or not. That was the last appointment we ever had with Brenda.

The following week, I got the phone call I had been waiting for. A cancellation appointment had become available the very next afternoon. I accepted the appointment without hesitation, told work I would need to leave early, instructed my husband to do the same, and asked my sister if she would come with us. Trace knew all the right terminology, and I felt like I needed the support of a professional who I knew would be on my side. I needed someone who already knew Sawyer – somebody who already understood. By that point I had no faith left in the system and I went to the appointment assuming that I wouldn’t be listened to, that they wouldn’t understand the issues we had been facing, and that they would think I was an overprotective, exaggerating mum. I had no idea what the actual appointment would be like, who would be there and what they would do.

I didn’t sleep very well that night. It had taken so much energy to get the appointment that I hadn’t actually stopped to think what happen once we had one. I had imagined we would eventually be given a date far in advance, giving me extra time to process all the thoughts and feelings that would come with booking an appointment like this one. I suppose somewhere along the way it had become elusive to me and I had become so obsessed with getting it booked in, that it had lost its meaning. I had waited nearly 12 months to get an appointment, and within 24 hours it would be over, and my son’s fate would be determined. Except, it wouldn’t. That night as I lay awake in the heat, a terrifying realisation washed over me. Even if they were to give Sawyer a diagnosis of autism, still no one would be able to tell me to what extent it might affect him as he gets older.

The next day, after a year of anticipation, we finally made our way in to the hospital.

The Mean Time

Autism. Could my son be autistic? What would it mean if he were? Question after question after question, and what I’ve learned most throughout this journey so far is that when you are affected by autism you will ultimately have to learn to accept that often, there will be no answers. Let alone the right ones.

I had fairly regular conversations with my sister from that point on, and of course I started doing my own research. The more I read, the more I understood and the more I understood, the more I realised that Sawyer was, without question, showing some signs of autistic tendencies. If anything, that realisation forced me to chase his paediatrics appointment with growing impatience. I would be lying if I said I hadn’t felt scared for what future would mean for Sawyer, and for our family, but back then I must have, instead of addressing those fears, turned them in to something else. I became quite obsessed with making sure Sawyer got all the help he needed and that he was afforded the same opportunities as other children his age. I didn’t recognise any of that at the time, but I see it now and I understand it now more than ever.

In the weeks and months that followed, Sawyer’s speech progressed slowly and his attention span remained the same. He started developing many other issues that we tried to learn to deal with on a day-to-day basis. I recall vividly an evening when my husband and I were going out to celebrate the birthday of one of his colleagues. By this time I was 6 months pregnant with my youngest, and Sawyer was heading toward two and a half. My parents arrived at our house to look after Sawyer and he was incredibly excited to see them. We all sat around chatting and doting on Sawyer, as is the norm with a child of that age, when he did something that upset us all. I’m not sure that I will even be able to explain what happened in words on a page, but I will do my best. Sawyer was walking from the kitchen to the living room, with a smile on his face, toward us as we sat on the settee. He got almost half way across the room and then suddenly looked terrified about something. He shook his head, he screamed, he cried, his eyes flicked around as though they were out of control. It was as if he has seen something that we could not see. Of course we all looked around to try and find whatever it was that had upset him, but there was nothing that could be easily rationalised. This had happened before, and happened again several times over the coming months, always around different people and in different places. It is a perfect another example of an unanswered question because we never did and never will understand what had upset him on those days. He couldn’t tell us then, and he wouldn’t remember now. I can only put it down to some kind of sensory imbalance, and feel glad that it didn’t continue for very long (although it seemed like it at the time).

After playing cat and mouse with the system for the longest time, I finally managed to find out the details of the secretary who works on the children’s centre at the hospital. I contacted her and begged her to find out what was going on. I loved that woman. She took it upon herself to find out where the ball had dropped, who she needed to speak to, what she needed to do to get the CAF form to the right place, and to get Sawyer the appointment he had been promised. Two weeks later, we received an envelope stamped with the children’s centre logo. Finally, an appointment! I ripped it open with anticipation, hands shaking as I read it out to my husband. They had put us on the waiting list. All of these months, and we were only on a waiting list? I was due to give birth the following month and things were all getting too much. 7 months pregnant and dealing with a toddler is difficult. 7 months pregnant and dealing with a toddler like Sawyer, as well as work and trying to battle through the system? Impossible. Every day was a struggle. I was tired even more than before, and when maternity leave finally came on my birthday in 2012, the relief was unimaginable.

My pregnancy with Piper was bittersweet. Many of my friends were having second children whilst their first was 2 or 3. I read facebook statuses about how excited their child was to be getting a sibling, and forum posts detailing cute discussions parents had been having with their toddler. People would ask me if Sawyer was excited to be getting a new baby. I can’t begin to tell you how saddening it is to feel like you need to lie in the face of a question like that. Was he excited? How could he possibly be excited when there is no actual way of telling him in the first place? Excited? He doesn’t even know what the hell is about to happen to him, and how his life will change. There will be no discussion, and there will be no warning for him. No preparation, no ‘this gift is from your new baby sister’ – nothing.

I went in to hospital at 8pm, by which time Sawyer was already in bed. My main concern throughout labour was getting back so that Sawyer’s routine wasn’t disrupted. I wanted things to be as normal as possible for him. By this point he was already dealing badly with sudden changes to routine, and this didn’t feel like a good time to disrupt things further. After labouring a long time at home, Mum took us in hospital before 9pm and I had Piper at 1.53am. I wont go in to details about the pregnancy or labour – that’s not what this is about – but I will tell you that I insisted we leave the hospital before 5am and we were home before Sawyer knew I had even left. I don’t know how much my labour was influenced by my maternal need to get back home as quickly as possible, but I imagine quite a lot. My Dad brought Sawyer down the stairs at about 8am. He walked in and he glanced at me. He double glanced. He double glanced?! Did he see that I’m holding a baby? I asked him. He found his toys and he got on with life.

By this time Sawyer was two and a half years old. He had never really shown any compassion for anybody, he didn’t have friends as such at nursery; he tended to play alongside children rather than with them. So imagine our surprise at how he reacted when we had to take Piper for a standard hearing check when she was only a couple of weeks old. We, all four of us, went in to the room where they were to test Piper’s hearing based on sounds that went in and came out of her ears. The room needed to be quiet, and Sawyer was rarely conducive to those types of scenarios, so we decided to take him out in to the corridor to play, whilst the lady did her job. No sooner had we left that room, Sawyer panicked. I distinctly remember him shouting, pained and over again, ‘OH NO, BABY!’, over and over again, frantic in his movements, disturbance all over his face. This became a habit to the point that when I took them anywhere, I had to take Piper to the car first and then go back for Sawyer – just so he could be sure we weren’t leaving her behind. This was probably the beginning of Sawyer’s OCDs and obsessions. We have plenty of time to talk about those later.

Meanwhile I had been in regular contact with the Early Years Support team (part of the local education authority), who were coming to meet with me both at home and at school, in meetings with Sawyer’s nursery. The lady who was assigned to us, let’s call her Brenda, was around 50 years old and was pleasant and experienced. She told me in one of our first meetings that she had been a teacher for many years, and then moved on to the support team where wanted to help children with additional needs. She observed Sawyer in nursery as well as at home, and gave us all advice on what we could do to help him feel less anxious, and cope with changes in day to day life. Brenda reassured me that even without a diagnosis, the Early Support Team would assist Sawyer and help him day to day, as well as when the time came to transition in to school.

I don’t think anybody knows what I’m about to say next (not even my husband). But let me explain. Before you get a diagnosis, as a parent, you are not quite sure if it might be possible, that you could be, maybe, just a little bit crazy. Even if you’re 99% sure of what is going on, there is still that niggling 1% that says ‘you’re just ever so slightly nutty’. So I’ve never told anybody to this day that I phoned the paediatric department at least once a day for 6 months. The turning point came only when I broke down on the phone to them, and finally got a reaction in January 2014.

This seems like a change of subject, but bear with me. Two of my oldest and dearest friends have two children of almost equal ages to mine. We always joke that we have matching families because we both had a boy first and a girl second. Their children are gorgeous, an honorary niece and nephew that I’ve known from day one and I love very much. I took both my children to their house for a birthday party one Saturday afternoon and at the end of that day, the camelly (like a camel) straw broke. Incidentally it was the first time that I became aware of Sawyer’s inability to cope with loud rooms. These days I understand sensory issues (which I will talk about later) in detail (though still ever-learning), but back then it was all new to me. The living room was packed full of children, and it was warm. Toys were flashing lights, making sounds and racing across the room in all directions. Adults, happy, and enjoying watching their children play were laughing and talking at volume, as you would expect from any party, but more so when you are trying to beat the volume of a group of 2 year olds.

I can’t explain what happened next very well without it sounding flippant. Sawyer couldn’t cope when someone took his toy. Normal for a 2 year old, right?! And that’s where it becomes difficult to explain – the difference between an autistic meltdown, and a tantrum. Again, we’ll come back to it later and I’m sorry to not be able to address it all in one go (believe me, I want to) but it’ s just not possible. So for now, let me say that the meltdown was, and always will be, significant.He couldn’t cope, and the party ended for us with me scooping him up carrying him screaming and kicking to the car, going back for Piper, and driving the half an hour home with Sawyer in indescribable internal agony in the back.

I got home with my mind in pieces, and text my husband to tell him what had happened that day (oh, did I mention he was on his stag do?). It seemed to me that there was nothing left that I could do.

From now on I would call that unit twice a day.

 

 

Cat and Mouse

I want to talk about how awesome the system is for parents who suspect their child may have additional needs. I really want to tell you what a flawless process it is, and how we were incredibly lucky to receive the amount of support we had to get an appointment with a Paediatrician quickly and efficiently. I desperately want to tell you all those things – but I can’t. They’re simply not true.

I had called the Health Visitor and arranged an appointment to discuss my concerns. She arrived the following week and we started to talk through what was bothering me. She was pleasant, took lots of notes and she heard what I was saying, yet despite all of the different concerns I had voiced, she only wanted to focus on Sawyer’s speech delay. What I didn’t know at that time was that this would be the first of many frustrating meetings that would lead to more frustrating meetings. The first of many appointments where I would talk and talk and someone would nod and write notes, hearing only the problems they wanted to hear and casually ignoring the rest. I wont say that any of the meetings were pointless because as you know by now, we eventually got to where we were going, but each one became more draining than the last. And what I also didn’t know at that point was that I wasn’t even off the starting blocks yet, and that it would be another 12 months before we got anywhere near any definitive answers.

A week after that first appointment, we followed the health visitor’s recommendation, and found ourselves at a speech and language drop-in organised by our local Children’s Centre. I still didn’t think that Sawyer’s issues came down to speech and language, but hoop jumping was to become a speciality of mine in the months that followed. The drop-in looked as I had expected  – a room with toys everywhere, children playing together, and a few mums stood chatting at the sides of the room. Sawyer gravitated to a pile of toys and I sat myself down beside him, talking at him about the toys he was playing with and trying not to feel too much like I was being judged more with each word that left my mouth. No sooner had I sat down, Sawyer ran off (I was midsentence but that wasn’t unusual) to a different part of the room. One of the specialists soon came over and started to ask me questions about my concerns. She observed Sawyer for a while and at a certain point he came running back over at me (not to me – very different) and started to grab at some other toys. Eventually it was decided that although she had seen he could give me good eye contact (he shot a couple of fleeting, accidental glances at my face) his speech delay was significant enough to be referred to Speech and Language Therapy.

The waiting list for therapy was a couple of months long and to be honest I felt frustrated at having to go at all, since there was no-one on this earth that would be able to give my son any type of therapy. I mean what would they do? Look at books with him? Flash cards? Not a hope. It seemed that nobody was understanding the type of issues Sawyer had. Surely he couldn’t possibly be the first child with these issues that had ever been through the system? He surely couldn’t be that unusual? In anticipation of the appointment we were asked to take Sawyer to a routine hearing test, which we dutifully attended. (As a complete aside, I was -still am – a working parent, and these appointments are all offered on weekdays between 9 and 5). The results of the hearing test came back clear (as expected) and we finally got an appointment through to see the therapist at one of the local GP surgeries.

The appointment was very different than the ones I’d experienced so far. This lady listened to me. She saw almost as soon as we walked in to the room that she could not get through to Sawyer with speech therapy because he wasn’t able to stay in one place for long enough. She recognised it. She saw it. This was the first moment that a health professional had shown an understanding of what I had been trying to say, and it felt amazing. I could have actually kissed her, and I’m pretty sure I told her so. She explained to me that often people are made to jump through these hoops and come to speech therapy because then it becomes her responsibility to fill in what was known as a CAF form. A CAF (Common Assessment Framework) is a lengthy form. It serves as a standardised tool used to conduct an assessment of a child’s additional needs, helping practitioners to decide how those needs should be met. She explained that this would be sent to the relevant people and that we would then be able to see a child psychologist for assessment. She said that she was satisfied he needed to be assessed and that she would fill in her parts of the CAF form and forward it to me to fill in the gaps. I left the appointment that day feeling like we were finally on the right track. Finally we would be able to get Sawyer seen by a pediatrician! A couple of weeks later she sent me the form for me to add my parts, and I sent it back almost immediately.

To this day I’m not sure what happened next. A month went by, and another month. I tried to call the speech therapist but the phone automatically went to a message box and I never got a call back. I contacted the Health Visitor to see if they could shed any light but they had no idea which stage in the process we were at, and who had been ‘holding the ball’ last. I called the pediatrics department directly and they didn’t even have Sawyer’s name on a waiting list. Each time I contacted someone I was told they would look in to it, and another week would go by without my hearing anything. And so the game of cat and mouse began.

At some point around this time, I called my sister. Trace had been a Clinical Psychologist for many years and I seemed to remember that she had worked with people with additional needs. I don’t remember exactly what words were used during that phone conversation, but I do remember incredibly clearly, the way that I felt and the realisations I had. I told her I was taking Sawyer to some appointments and that I was concerned by his lack of concentration in particular. I think I mentioned that ADHD had crossed my mind, but that I wasn’t really sure. I do remember very clearly thinking that she didn’t sound surprised, and that she was definitely positive about the steps I had decided to take. She listened to what I had to say, and asked me some questions that seemed excruciatingly relevant. Trace had spoken about some of Sawyer’s sensory issues in the past (rubbing head on carpet when tired, spinning around in circles) but at his young age, I had always put them down to – well, being that young age. She mentioned those issues again during that phone call, but for the first time (to my recollection) she began to relate them to something she had never related them to before. Autism. And that’s when it hit me.

She already knows.

Seeking Help

When Sawyer turned 2 (at which point I was 3 months pregnant with his sister. Yes, I know – we’ll talk about it later) I started to realise that his speech was, although developing, coming along very slowly. Nursery had noted that he was behind with his speech, and I was becoming increasingly aware of other children his age (and much younger) who had far better speech than he did. He seemed to not only have fewer words but was also unable able to string together simple sentences using the words he did have. I started, naturally, trawling the internet and came across several speech therapy websites that gave indications of how many words children usually have at certain ages. Of course this varies from child to child but I very quickly came to realise that Sawyer was actually further behind with speech that I had thought. The realisation that this was something more than ‘just not having many words’ yet came when I read about the other side of speech, which hadn’t occurred to me yet. Listening.

It makes perfect sense to me now, that in order to learn to speak, a child must first be able to listen and absorb information. As I read through page after page of speech and language websites it became clear to me that Sawyer wasn’t following simple instructions. I recall some of the exact instructions that one website suggested children are usually following by age 18 months. One suggestion was that children of around that age usually enjoy games like peek-a-boo. I can remember thinking that Sawyer would never be able to sit and pay attention to me long enough for that sort of game. Another one was ‘bring me the ball’. At that point he might have heard/listened that instruction 1 time out of 20, but I definitely couldn’t have said that he could categorically complete that task. Point to things when you ask them to? Urm, no not really. Enjoys pretend play such as pretending to talk on the phone? No.

I grew up with a younger sister and with lots of children around me. Of course I had seen that children like to make believe. That they like to do peek-a-boo and pat-a-cake and all those little things parents take for granted (I’ve still never done either with Sawyer. Again, another post for another day). Slowly the realisation was sinking in that if I was completely honest with myself, Sawyer did none of the speaking/listening things that were typical of a child his age. Or even of a child 3, 4, 5 or 6 months younger than him. Sawyer simply could not concentrate. He couldn’t stay still. How was he supposed to learn the language we speak, when he couldn’t stay still long enough to take anything in? I started to understand at around that time, that his inability to speak stemmed from an inability to listen and that the inability to listen was clearly coming from… something else. I began to recognise for the first time that actually I wasn’t worried about his speech at all. What I was worried about was something much deeper. Something that I didn’t yet understand.

Isn’t that terrifying? I knew something was wrong with my son but I didn’t know what. Isn’t that haunting? So why didn’t I feel scared? Why didn’t I feel much at all at that point, aside from tired? I think part of it was, plainly, that whatever this problem was, it wasn’t life threatening. He wasn’t about to die. Beyond that, I’m not really sure why I felt so detached,  but I have a hunch that it simply had not sunk in. You know what? Now I come to mention it – I’m still not sure it has sunk in yet. Not completely anyway. Shall we come back to that later? I’ll add it to my list.

With the realisation that Sawyer’s issues extended beyond speech, past lack of concentration and landed somewhere I hadn’t thought of yet, came several others. Could he have ADHD? We’ve all heard about those children *rolls eyes ironically*. Google told me fairly quickly that the symptoms seemed to fit well with his characteristics. He was inattentive, hyperactive, impulsive, had a short attention span, excessive physical movement, unable to sit still. I called the Health Visitor and booked an appointment for the following week to discuss my concerns.

 

To be continued.

 

 

Acceptance is multifaceted

I have so much to tell you, I can’t keep it all in. I started this blog only this morning and I seem to have found a form of inspiration so magnetic to me that I now cannot stop typing. I don’t think I’d realised how much Sawyer’s first 2 or 3 years had affected me emotionally until I started writing it all down, and I don’t think I’d realised until now how much my life has been changed by them.

I have so many stories to tell you that I want to stay up all night writing, so I can send my stories out in to the universe. But I want them to make sense, and I want them to do justice to how it was. To how it is. I want my words to do justice to my son. All the stories are coming, I promise. I don’t know which order they will come in or if the order, once established, will make any sense to you as a reader. But when the time is right my stories – his stories – will be told.

For now I’ll make do with making chronological sense. Where was I?

Ah yes, Sawyer learned to walk.

I remember so clearly the day that I typed four words in to Google. “Safety helmets for toddlers”. Not for when he was riding a bike (he wouldn’t sit for that long!) but for general day to day use. Sawyer was running and falling so much that I genuinely feared for his brain. Surely other children didn’t fall over this much? I mean is it normal for a child to be so clumsy? It would appear so, since at his 1 Year Check with the Health Visitors he ticked all the boxes to indicate he was developing normally.

I answered the questions as honestly as I could but developmentally the truth was he just wasn’t behind. Aside from what I thought was a slight speech delay at that age, he said Mama and Dada and he used them for the right people. He could walk, crawl, roll, spin, jump, throw. He had teeth. He slept at night. He no longer had a bottle. I will never forget at the end of the appointment, the Health Visitor asking him if she could weigh him and measure him. He didn’t even hear her. In fact, he hadn’t been interested in her, the toys around him, or anything in the room from the second we arrived. She moved over to the scales and stood patiently, calling him in a calm voice and waiting for him to follow her instructions. He didn’t. I scooped him up and plonked him on the scales, but trying to keep him still, I already knew, was futile. Eventually, she wrote down something that could have been his weight, and we left.

November 2012 we decided to go on holiday to Lanzarote. Our first attempt at a little holiday had been scuppered by his inability to keep still, but he was older now (18mo) and we were going just the three of us so I hoped it would be easier for him to deal with. He would have our undivided attention after all.

I will never forget sitting on the tarmac at Stansted Airport with an overwhelming feeling of panic washing through my veins. I was shaking and my chest was tight. We had left the house at 6am and he started before we even got to the end of the road. He didn’t want to be in his car seat and he screamed bloody murder for most of the 35 minute drive. Where had I gone wrong? I had done everything I had read about in the holiday blogs. I’d sought advice from other Mums about how to keep an active toddler happy on a flight. I had snacks, I had milk, I had cartoons, I had books. So why had we not even got to the airport without a meltdown? Shouldn’t this be the easy bit?

We boarded the flight and Sawyer sat on his own seat in between us both. He needed to sit on that seat for 3 hours, with a seatbelt holding him in. What exactly was I thinking when I booked this flight? How did I think this would ever work? There was a moment where my husband and I looked at each other in complete desperation, that I’ll never forget. We were silently looking at each other, each of us hoping that the other had the solution. There was no solution. “Shall we just get off?” he asked me, as the doors shut. We were committed. Stuck. Already the woman in the seat in front of Sawyer had asked us to stop him kicking her chair. She will never know how devastating that one sentence was to me. I desperately needed people around me to understand and see that he was having trouble coping with having to sit still, and that was what I got instead.

Thankfully the people in the row behind us were lovely. Sawyer would stand on his seat and peer over at them and when they acknowledged him he giggled and hid. I will forever be grateful to that lovely couple in row 3. They calmed my nerves without knowing they had done it. I’ve always remembered it and ever since that day I have tried to remember how hard it was so that I’m never quick to judge when a child is being hard work and it seems their parents have no control. I don’t always manage it, but I am human after all.

We got off the plane and on to the coach. It was only a half hour journey now, we had nearly made it! Sawyer fought sleep but I couldn’t blame him. We were all now hot, stressed, upset, tired. Tired. He screamed the whole way to the hotel, and finally just as we reached our destination, he fell asleep. Somehow he stayed asleep as we got off the coach and put him in to his buggy. At that point, motion was the only thing that kept him asleep so we kept him moving the entire time. We checked in, I rocked him. We got to our room, we took it in turns to shake the buggy whilst the other one went to the toilet and tried to wind down.

We had made it. We had made it and Sawyer was asleep. For now.

The rest of that holiday followed suit. The days were impossible aside from the 2 hours he would sleep in his buggy after an hour of running on the sand followed by an hour walk in his buggy trying desperately to get him to sleep. The only way he would stay in his buggy was if he was moving. The second you stopped to look in a shop, or to scratch your leg, he was off again and screaming. My birthday was the 23rd November and I spent most of the evening crying. In the bar area there was a children’s play room and a stage which was low enough that all the other children were running around on and playing together. Sawyer ran on the stage with no concept of when to stop or that he would fall off the edge, which of course he did. Other children tried to speak to him and he didn’t notice, or if he did, he didn’t care. He would fall from the stage and run any which way he could, through the crowds. We went back to the room at 6pm, put Sawyer in his cot, and sat imprisoned in the heat watching a film on our phone.

Back then we were new parents of one child, and we were making it up as we went along, like all new parents do. Now we have second child who is Neurotypical, we often ponder what the differences would have been if our children had been born the other way around. I think if Sawyer had been second after Piper, his issues would have stared us in the face from a lot, lot earlier. At the point I’ve been describing, I felt something wasn’t quite right but I just didn’t know what it was. And that’s not something you can casually pop along to the GP about, is it? “Hi, my son seems a bit weird but I’m not sure why. Oh and he likes to run a lot”.

Acceptance of Sawyer’s condition, for me, came in three stages. First, was accepting that there was definitely something not quite ‘normal’ about him. Accepting it and acknowledging it personally speaking. Second was accepting that we needed to seek professional advice. In doing this, we needed to tell family, friends, nursery, etc. The third stage of acceptance came after the diagnosis, when suddenly we found ourselves certified parents of an autistic child. Less than a six months before he was due to start primary school.

Maybe there will be more stages of acceptance to follow. And maybe they will unfold as I continue to write these blog posts. Maybe you’ll even notice it before I do, I just don’t know. And that is another thing that I have learned to accept.

I just don’t have all of the answers.

 

 

 

 

First Signs

Sawyer was a lovely baby. He didn’t think much of sleeping at night time, but I hear they rarely do. He would happily lie in his pram for an hour when we went out for walks, and in the evenings he would kick around on the floor with his nappy off, gurgling and cooing. He started sleeping through the night at about 7 months old and once he mastered it, he would sleep from 6pm until 7am every night. Sometimes he would sleep for 14 hours in one go. Those heart-stopping moments when you wake up of your own accord and instantly panic – what’s happened to them?!! Then the next day, he was off again. I would describe him as a wind-up toy back then – as soon as I lifted him out of his cot and on the floor the next day, the very second his feet touched the ground, he was off like a shot. Another day.

I would say that for the first year of his life, Sawyer met all the ‘targets’ that you would expect. He had a fairly low birth weight for an overdue baby (6lb 5oz) but he gained weight steadily and it was never a cause for concern. He got his first tooth at 5 months, and he was saying Mama and Dada by the time you would expect him to. Aged one year and one week, he took his first solo steps, and at that point life for us changed forever. Drastically, without warning. Forever. But before I get to that, let me rewind a couple of months.

Sawyer – aged 10 months

With hindsight, the first ‘signs’ of Autism showed when Sawyer was about 10 months old. I remember it well because it coincided with a UK break we had taken with our friends and their 5 month old son. We had booked a lovely town house in Gorleston, close to the beach and with a little shopping centre and local pubs nearby. I remember that it was the first experience I had where I realised something was a bit unusual about Sawyer.

We all hear that life changes once a child starts to move around, and that you have to move everything out of their reach. Of course we expected that we would need to adapt our surroundings and make allowances for him, but what came next for us was far more than I’d anticipated. Sawyer simply wouldn’t, or couldn’t, stay where you put him. Inside the house, he was beyond destructive. Anything he could find that wasn’t nailed down, he would pull on to himself. I lost count of the amount of times he fell and hurt himself. He pulled curtains down, coffee tables were pulled over on top of him, he would climb up on to the window ledges and grab at ornaments, etc. But this was only one part of this break that made me think something wasn’t quite right. Pub lunches were impossible because Sawyer wouldn’t sit in a high chair any longer. Now he knew how to move, it was all he wanted to do. We would barricade a section of the pub with tables and chairs but nothing worked, he just wouldn’t focus. He wasn’t interested in the food unless it was something he could hold and eat whilst running around. Perhaps a trip to the beach instead?

On the beach, under glorious sunshine, families sat and played with their children on the sand. We reached a clear spot and laid the blanket out with snacks and drinks. Our friends’ little boy, at 5 months, sat happily on the blanket and kicked his feet around, all smiles. His parents lovingly checked his sun cream, adjusted his hat, and generally revelled in this special first experience with their son. On the other side of the blanket, was Sawyer. Sawyer showed no interest in playing with the sand in the way that other children seem pre-programmed to do. He didn’t want to touch it and explore it, or build sandcastles on it or anything of the sort. He simply wanted to go somewhere else. Anywhere else. He crawled off, we moved him back, he screamed, he ate sand, he just wasn’t…. he wasn’t content. Was he missing something? Children are supposed to love this stuff. Maybe he needs a nap?

Back at the house I stood alone in the downstairs hallway, pushing his buggy back and forth, tilted back so he was fully reclined, with a towel draped over to make it dark. The child just could not switch off. He was overtired beyond belief, hot and bothered and upset, but it was as though his mind could not switch off. He was beside himself, and so was I.

Looking back on that holiday now, I think that I was seeing the first signs that Sawyer had some difficulties. Of course we will never know for sure, but I look back and wonder if being taken out of his usual routine could have, even at that young age, disrupted something in his mind and set him on some sort of anxiety trip that none of us could explain. All three of us were emotional and tired by the time we got home from that trip.

Sawyer – aged 1 year and 1 week

Like any parents, we were elated when Sawyer took his first steps. There really is no feeling like it. He was only a tiny thing so he looked a bit like a giant baby running around – because that’s what he did from the moment he learned to walk. He ran. He ran away. He ran in to things. He fell. He ran at people. He ran inside gardens. He ran behind shop counters. He ran out of the house. He ran. I can think of many examples from this point on, where I knew something about Sawyer’s behaviour wasn’t normal, but I will tell you about one in particular that still haunts me to this day.

Another friend of mine has a son 4 months younger than Sawyer and we saw each other whilst on maternity leave, and then later, on my days off from work. We decided to go to a local coffee shop, where there was a children’s play corner with toys and books to keep the children amused. The idea of course is that busy Mummies can drink a cup of tea while it’s still hot, and children can play together. Sawyer had screamed the entire walk there because he had developed an absolute hatred of his buggy. Half way there I decided to let him walk a little way in the hope he would stop screaming (it did), but instead of walking alongside me, holding my hand as I’d seen so many other mothers with toddlers do, Sawyer simply ran away. Towards the road mostly. And so he had to go back in to the buggy, screaming the rest of the way there.

When we got to the café, my friend and I bought snacks and drinks, and sat down near to the children’s corner. My friend’s son went over to the toys and started playing with another boy of around the same age. Sawyer ran in the opposite direction, through in to the adjoining function hall, where he proceeded to run around in circles, refusing to leave. My sausage roll went cold, and he ate nothing. We left, and he screamed the entire way back again. On my way home in the car that day, I called my husband in tears and I distinctly remember at that point sobbing in to the phone ‘it’s just not fucking normal’, with Sawyer, confined to his car seat, screaming in the background. My brain hurt. I was tired. I got home and counted down the next couple of hours until I could put him to bed. At that age, I did that a lot. I couldn’t face the battle of the highchair that night, so he ate his toast (the only thing he would eat without a fight, but that’s another blog post) whilst running around the house maniacally.

And there we have it. The first signs (I think) that Sawyer had some issues beyond the level of comprehension I had at that time. When he was screaming at being in the buggy or highchair, it never felt to me like he was having a tantrum. It seemed like he was scared of something. It was as if he could not comprehend why I would make him do that when all he wanted to do was be free. When I explained the problems out loud to people I recognised even myself that it sounded like I was describing most other year-old boys. I’d heard many people joke about their active toddler boys, yet somehow I knew there was something more to it than that.

I just didn’t know what yet.

He Doesn’t Seem Autistic

My son is sitting next to me as I type this. He is wearing a Thomas the Tank Engine top, holding his favourite Thomas the Tank Engine toy, whilst watching Thomas the Tank Engine tutorials on YouTube. For those of you unfamiliar with Thomas tutorials, basically they involve watching people open Thomas the Tank Engine toys and play with them in various ways, over and over again. Sawyer is mesmerized. If you are thinking that you have read the words Thomas the Tank Engine too many times for a paragraph this short, then you are currently viewing just a tiny glimpse of life as Sawyer’s Mummy. A world in which you hear the word Thomas well over 500 times a day.

Thomas has featured heavily in our lives since before Sawyer turned 2 years old. Our house became filled with all different types of Thomas paraphernalia – clothes, toys, towels, books, games, cups, plates, the list goes on. Now of course, it isn’t particularly unusual to find a boy of 2 years develop a fondness for Thomas the Tank Engine, so when his Thomas obsession began, we fully expected it to be a phase that would inevitably soon be overtaken by the next Big Thing. Sawyer will be turning 6 in July and Thomas features more heavily in our lives now than ever before. It is clear to us now that Thomas is more to Sawyer than just a fad; he is a constant in his life. He’s the thing that never changes, no matter how Sawyer is feeling or what challenges he has been faced with. Thomas the Tank Engine, for Sawyer and our family, is not just a passing phase, and we accept that wholeheartedly. Society, however, does not.

“Why don’t you give him some older toys to play with, he’ll soon forget about Thomas”. “He’s a bit old for that isn’t he?!”. “He’ll grow out of it”.

Growing out of it. I don’t think I had realised even until I typed that phrase out quite how badly it sits with me, and all the emotions I have tied up in it. With hindsight I knew there was something a bit different about Sawyer when he was 10 months old. As soon as he could cruise the furniture he became unstoppable to an extent that I somehow knew just wasn’t quite normal. “That’s just his age”, they said. When he was a little bit older and could walk, we couldn’t take him to parks unless they were completely gated because he didn’t play on the apparatus like other children his age – he simply ran. “All boys are like that”, they said. His third birthday was spent at a local softplay centre and instead of playing with friends he took his Thomas toy in to the ball pit and lost him, resulting in a meltdown of epic proportions and having to leave early. “He’ll grow out of it”, they said.

I think it’s important for me to say that I completely acknowledge that these phrases and ‘reassurances’ don’t come from a place of hate. I completely accept that people use these words to make me feel better about a situation I can’t control. Before Sawyer’s ASD diagnosis these words were used to try and reassure me that he was ‘normal’ and that I shouldn’t worry about him. And since diagnosis the words and phrases are used to try and reassure me that he ‘doesn’t seem autistic’ and that he will probably grow up to be completely normal. It’s amazing how many people suddenly choose to tell you about their Autistic cousin who was diagnosed with Asperger’s and has grown up to be a very successful something or other. And of course I’m bloody happy for them, because clearly that is what I hope for Sawyer. Yet telling me about said cousin is just not helpful to me, because I don’t need Sawyer to be normal in the way that other people seem to. I need him to be Sawyer, and for other people to just accept him as he is.

Being a Mum of a highly functioning Autistic child is challenging for many reasons. When we finally got Sawyer’s diagnosis he had just turned 3, and after struggling through the system for so long, was actually a relief. I already knew he had Autism, so I wasn’t sad. If anything, I felt like somebody had finally told me that I wasn’t imagining it. I was happy. Sawyer would always be Sawyer but suddenly I had a piece of paper explaining that he just doesn’t view the world the same way other people do. We finally had a diagnosis that explained why Sawyer sometimes called (still does) his Aunts and Uncles by the wrong name, and why he rubbed his forehead on the carpet when he was tired. I thought that the diagnosis would help people to understand Sawyer’s condition and make allowances for some of his strange behaviour. I was wrong.

Society wants my son to be normal, or abnormal. Society wants Sawyer to fit in to the Autism box a little bit more neatly. I mean come on, Sawyer, for Gods sake be a little bit weirder for the audience if you please!! I still have other parents in the playground insisting that his strange traits are just the same as their ‘normal’ child. I’m still ‘reassured’ that he will grow out of his Thomas obsession, and that I shouldn’t worry because he doesn’t seem Autistic. Even teachers make me feel like I’m imagining his Autism because he’s a well-behaved boy who isn’t underachieving. What I actually want is for people to accept Sawyer and his unusual mannerisms, and love him for them. I want people to accept that actually, he IS different and he DOES seem a bit weird, and he DOES need some allowances to be made. He DOES need just a little bit more help to understand the world, and he DOES need you to help him stay calm (even if that means carrying a Thomas toy in to the swimming pool).

Sometimes I wish that Sawyer’s anxieties and struggles manifested in ways that were more obvious to the naked eye, so that finally the people around us would accept that Sawyer is and always will be, just a little bit different. Sawyer needs to be allowed to be Autistic. He won’t magically grow out of Autism and it wont go away if we don’t look at it directly in the eye (Sawyer couldn’t anyway!).

To me, pretending my Autistic child isn’t Autistic is like pretending a disabled child doesn’t need a wheelchair. Sawyer needs a little bit of extra help and someone to fight his corner. Lucky for him, I’m just warming up.