May 2016. It’s now 2 years since our GP referred my son to the Autistic Spectrum Team for an assessment. He was accepted onto the waiting list in early 2015, but I’ve been assured more than once it’s that the original referral that determines his place on the list.
This winter we had a really bad couple of months with the boy, colds, tiredness, sleep issues, feeling cold, wearing fleecelined waterproof trousers, a bodywarmer and a coat over his school uniform in class, taking his teddy everywhere with him whenever he left the house, tantrums on the way to school, being left at school in tears, anxiety attacks every time we tried to leave the house, clingyness, trying to forbid either parent from going out of an evening, increase in the number of tantrums/meltdowns. It was not fun. For any of us. It seemingly started with a cold and then got progressively worse for about 3 months. We tried everything we could think of to help him, to manage the situation, to preserve our sanity, to enable us to go about our lives “normally”. I was at my wits end. I spoke to a locum at my surgery, she referred me back to the community paedatrician who’d recommended us for the list (seeing her appeared to be a triage type situation before we were accepted onto the list, well, once I’d chased and chased and found out they had no record of the letter and got it resent anyway). I emailed the Special Needs Co-ordinator at school.
Then things started getting better. I have no idea why (just like I’m not really sure how it got that way to start with). I’d be nice to think it was our patience and persistance in handling the situation, but I’m not convinced.
After that school held a Team Around the Child Meeting and someone from the Communication and Interaction Team came. Later, one of them came to read him panicosaurus and tell him about how the brain works. His teacher fed back to me that this mainly seemed to annoy him, as she referred to the model brain she was holding as “My Brain”, which he found factually incorrect. I’m guessing he growled. Oh yeah, the growling at things he doesn’t like to hear started this winter (that’s still with us, maybe it’s happening less, maybe I’m more used to it, maybe with less other things going on I’m just coping with it better).
Today we had an appointment with the Community Paedatrician, the follow up to the GP writing to her. 4 months later. Good job things got better really.
She listened, she made notes. She’s suggested visual timetables (which we were using before we ever new they were called that or anyone had mentioned that he might have an ASC) and Social Stories (I tried one of those once, he teared the paper up it was written on), and said she’d write to the GP asking them to prescribe Melatonin to help with his sleep. She’s also going to write to the ASC team telling them things have escalated in the hope this speeds his referral up (although in theory we should be near the top of the waiting list by now, after all it’s a “2 year” waiting list). She’s also going to refer him for a Sensory Assesment as that is apparently a separate waiting list and not done as part of the ASC assesement, even though as she pointed out, they’re both part of an Integrated Services Team. And she suggested that if, when we get to the end of this process, we have any energy left, we might like to feed back on the system (that so clearly frustrates her).
I’m not sure what else I could expect her to do. But on a day to day basis it’s not that helpful, wouldn’t really have changed things much last January, if things hadn’t started to get better of their own accord.
The worse thing though that this was an appointment with him, so he was there, listening, while we talked to her. He was given the option to wait outside, but didn’t respond. He sat there, playing minecraft on the tablet, wearing his favourite jumper, holding his teddy bear, but listening, I’m sure of it. Afterwards he was quiet and withdrawn, cuddling his teddy, chewing the cover his fragile ted was wrapped in, not responding to questions.
I took him back to school. I didn’t want to. I wanted to take him home and hug him. To take him into one of his favourite coffee shops for a hot chocolate. To let him come to the farmers market with me and chat to his favourite stall holders. To bring him back home and watch a documentary with him. But I didn’t. I think a return to normality was probably for the best. But I do think that school have no idea how much emotional toll these appointments have. He came home for lunch as planned and was better, but he’s not been at his best this evening.
And me, I have been quiet, withdrawn, upset, agitated, echoing with resonance at his distress all day.