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.