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?

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4 thoughts on “Diagnosis.

  1. Tim Parsons says:

    I suppose the simple answer is do what’s in front of you, as always. But keep writing, it’s helping us all to understand in some detail what’s been happening when we’re not there.
    Being detached from the daily struggle, we only see snapshots of your lives, and now we can begin to understand.
    For my part, Sawyer has, and always will be Sawyer, my beloved grandson that I adore with all my heart.

    Liked by 1 person

  2. Di Foster says:

    Nikki, I have just read all your blogs back to back, they were so compelling and moving – I feel exhausted.
    Sawyer sounds wonderful. I so admire your attitude and approach (and doggedness), he very lucky to have you as his mummy

    Liked by 1 person

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