Autism, Family, Uncategorized

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.

Related content:
Still Too Many Positives
Innocent Until Proven Autistic

2 thoughts on “Too Many Positives”

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