Written by Trina Lawrie
I was asked a while back if I would consider writing an article on how hard it is to get a ‘special’ child diagnosed. Suuuuure, piece of cake I thought…. Forgetting that I barely have time to fart, let alone carefully craft an essay for the first time since 1998.
I started to realise something was a bit off with my son when the ‘terrible twos’ were far more extreme than my friends’ children, and, well…. never ended. He has the most terrible rages. Back then I thought it was temper tantrums. Now I know they are meltdowns (and there is a very big difference once you know what to look for). Looking back, there were signs from birth, but he was my first boy and I thought that boys were just harder. The clincher was when my health visitor looked at me out of the corner of her eye and virtually whispered had I considered getting him assessed.
Until that point, I had just thought he was a naughty child who didn’t sleep, and that I wasn’t a very good mum. Many a night after a Somme-like battle to get him to sleep, I would slump in a chair and cry down the phone to my Mum, before staying up until 2am or later attempting to do housework, and repair the damage Monster had done during his waking hours. I can’t do anything whilst he is awake. He has to be watched like a hawk. We have locking window restrictors after he attempted to climb out of a skylight onto the roof, and he takes any kind of child proofing as a personal affront and a challenge.
Following our health visitor’s comment, I trotted off to the GP. Monster duly obliged by having an EPIC meltdown in the consulting room, which left me with a sprained wrist and a black eye. It took the GP less than five minutes to make the referral and usher us out of the door, no doubt fearing for the safety of his ornately pruned bonsai tree on his desk. “Winner!” I thought. Finally we are getting somewhere.
I. Was. Wrong.
Little did I know that it takes months to get an appointment. There is no support or advice in the meantime. I hadn’t even been given a leaflet. The GP was happy to tell me there was “something” wrong with my son, but would not be drawn on his suspicions of WHAT.
Finally our appointment came through and we were seen by a consultant paediatrician and a senior health visitor. I was disappointed and a bit disconcerted that they were not assessing him for the concerns I had raised, but whether he was reaching milestones. Sods law it was the one day he decided to co-operate and he did everything they asked of him with a beatific smile on his face.
These ‘standard’ tests do not fit ‘non-standard’ children. Monster is extremely intelligent – to the point of being at least a year ahead of his peers academically – but socially and emotionally is far behind. He is desperate to please (when he’s in the mood for it) so when they said “draw me a house”, he did. However if they had said “draw me a picture” they would have got pages and pages of numbers – a sign of his extreme OCD. Visitors to my home often comment on the wall under my bay window, where in one of his ‘moments’ he decorated it with Good Will Hunting-esque algebra, in bright orange crayon. I have yet to re-decorate.
I came away from the appointment deflated and feeling utterly defeated after being fobbed off with “well he IS only four”, “get re-referred if he starts school and you feel there is still a problem”, and my all time favourite “everyone has a degree of OCD”. I was frustrated. The notoriously-difficult-to-convince DWP were happy my son has issues, as they awarded him DLA. So why wouldn’t a doctor give me an answer?
After a couple of days brooding, and the phone call equivalent of a kick up the arse from my Mum, I began googling. I came across Sensory Processing Disorder Parent Support – Jeanette Baker on Facebook and it was a revelation. I stayed up all night reading posts and comments. My Monster ticked virtually every box. These other parents could be describing MY child. Over the course of the next few weeks and months, I learned from these other parents. I discovered tricks, strategies, triggers and coping mechanisms. Most importantly of all I discovered I wasn’t a bad parent, and I wasn’t alone.
We have been re-referred (partly thanks to another epic meltdown terrifying another GP). This time I will go prepared. I have video evidence, pages of his “artwork” and I will have written testimony from family and friends with experience of special needs’ children who have witnessed his meltdowns. This time I will NOT be fobbed off with milestones and platitudes.
Unfortunately, unlike in the USA, Sensory Processing Disorder is not officially recognised in the UK. Mostly it is lumped under the “autistic” label, and SPD children are often as far from stereotypically autistic as you can get. This can make getting any diagnosis very difficult to get. I have also been warned by other parents that the professionals are extremely loathe to give a diagnosis until a child is 7 (why this is the magic number, we are yet to find out). It will not be an easy fight to get my son his diagnosis, and the support that he needs. Nor will it be a short fight. But it is not a fight I will ever back away from, and I am eternally grateful to the SPD Parent Support page and its network of parents and carers for having my back.
Written by Trina Lawrie