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Misdiagnosis is not the end - a school that listened

Updated: Aug 18, 2020

Contrary to what some might think, the SEN journey of a child begins much earlier than Reception at school. Also, contrary to what some might think, it’s not always a straightforward process of referral from the school or GP, followed by assessments, diagnosis and, based on this diagnosis, getting the right educational support. Our story is a story of repeat misdiagnosis, years of frustration, trusting professionals against our own instinct - until, one day, we followed that instinct and ended up where we are today.

For our family it had felt, and still does at times, like wading through a swamp - in the fog. That’s not to say that there are not some lovely areas of lush green grass and sunshine, fun, love and laughter – or that you can’t always see the way ahead, with professional advice, support groups, or moments of clarity and insight.

By the time my son was two years old, I had already spent a considerable amount of time in the swamp, and mostly in the fog. A mother’s intuition, and the inevitable comparison with peers, quickly leads you to the conclusion that “all is not well”. I looked down at the bump that was to be my second child in just a few weeks’ time, and wailed, “what am I thinking having another one, when I cannot even cope with this child?” My son screamed for at least 4-6 hours a day, in 30-60-minute bursts, any time of day or night, and had been referred to Kings hospital for the investigation of “stomach pain”. The GP was at a loss to help us with the sudden mood swings, the extreme upset, the constipation, hiccups that lasted for hours, and the endless reflux.

Of course, we did plough on through the swamp with the extra baby in tow, who thankfully slept at night and was not such a handful. Husband was dispatched to Guy’s and St Thomas’ Hospital for a vasectomy as there was no way on earth, I would ever cope with three!

My son would never walk anywhere but run, however, never in a straight line and with everything in his way becoming an obstacle course. Any minor tumble or scratch resulted in the reaction of a child who had broken a few bones. He had to be held down for socks and shoes to be put on, or for a toothbrush to be allowed near his mouth – which thankfully opened to be cleaned, but only because he screamed.

Looking back, I have no idea how we all carried on a lot of the time. Nights out were almost impossible, weekend off - forget it. Friends houses or parties resulted in us running out early with the screaming child who could not be consoled. Sitting in a car for anything more than an hour was just not feasible with the screaming that ensued.

Finally, nursery and school beckoned. Potty training had not gone well and all attempts to encourage holding a pencil were a disaster. However, as every other parent, we had high hopes that the “professionals” could help us, so we were optimistic. I was certainly glad to finally have an hour or two during the day to just sleep… Reception followed, and soon we were being invited to a meeting to discuss his impulsive behaviour and potential ADHD. It was almost a relief. Finally - a clue, an idea of something that might help us define what the hell was going on – and then how we might deal with it. We bought the first book, about ADHD, and after about 12 months’ wait went to see CAMHS, and started trying to find a way forward.

This was the first of three diagnoses by CAMHS of ADHD. Each one resulted in us “slipping off the register”, having to return to the GP asking to be referred again, and then waiting another year for the next assessment. The final one, when he was ten, saw me literally pleading with the Head of CAHMS to put my son forward for an ASD assessment, or at the very least, “autistic traits” assessment. I begged them to diagnose him correctly before he started secondary school as the list of issues we had pointed directly to the ASD spectrum rather than ADHD.

As my son grew up and became more able to express himself, he could explain that socks felt “scratchy”, that toothbrushes “hurt his gum”, and that it wasn’t the writing that was hard - in fact, it was his extreme aversion to touching anything made of wood! Add into the mix an inability to lose at any game, being unable to admit fault or error, flinching at the sound of lead on paper, and many other sensory and tactile issues – and things were a lot more complicated to deal with.

Following our unsuccessful interactions with CAMHS, we had to settle for a private diagnosis of SPD (sensory processing disorder) and steadily work our way through endless and costly private OT appointments and psychotherapy, learning to adapt our family life to make it a less stressful place for my son and for all of us.

Throughout the primary school we felt generally well supported although it didn’t come without a fight and continuous effort from our side. After the first ADHD diagnosis at the age of five, the school was quick to implement aids such as a “wobble cushion” to help our son sit still in the classroom, (somehow those two things surely work against each other!) There was also extra support provided in small groups to try (in vain) to develop his writing skills, or longer parent evenings to discuss SEN targets.

Friendships were not easy, and every year we asked if the school would move him to another class to give him a fresh start, as he was not happy with the group he had. Unfortunately, this never happened. My main criticism of the school and the schooling system is that a SEN child is often “stuck” for years with one group of peers (and parents) who judge them on their initial negative experience. It becomes a vicious circle of gained reputation, of being “branded”, and the child being unable to move forward and enjoy a fresh start, even though they may be perfectly ready for it. This leads to incredible anxiety.

For most of years 2, 3 and 4, I had to physically drag him to school and, eventually, when my back could take no more, the head called a meeting to see what could be done to help my son want to be there. We finally found a type of sock he could bear to have on his feet, and I insisted that he should be allowed to use a plastic pen rather than a standard pencil as he was never going to achieve good writing when he couldn’t bear to touch wood. The school grudgingly agreed.

The transition to secondary school brought new meetings with the Educational Psychologist and new head of SEN to discuss issues, tactics, and support. We were very lucky to find a local school, a high achieving academy, that, amazingly, accepted and trusted my opinion that my son is “undiagnosed Asperger’s, with numerous sensory issues” rather than wrongly diagnosed ADHD.

It wasn’t achieved without a considerable effort on my side. When issues first started presenting themselves, I picked my battles and my timing wisely, knowing that - if an issue is serious and real - it will come back and another time may be better to raise it with the school. I put together a two page document for all my son’s teachers to read, explaining his challenges and advising them how to deal with him. Every year there are new teachers, every year brings new challenges and it’s always a work in progress.

He now gets extra time to change for PE, uses plastic pencils, is allowed to “skip” most art lessons as he can’t stand getting his hands dirty, wears non-uniform socks and has dropped languages as it was just too stressful. When he feels emotionally overwhelmed, he has a “time out” card to use to escape to the library. I am so grateful for the flexibility and support they have given us, despite the fact that many academies seem to be so ill-famed for their ruthless off-rolling and focus on academics rather than pastoral care.

With this support and understanding, he is now thriving socially and doing better academically. His handwriting will never be great, but then we live in a world of technology and laptops. Being schooled online and at home during the recent virus-lockdown has not been easy for me, but it has been interesting to see him so much more relaxed, and to see all his grades go up compared to this time last year. It became obvious how extremely tired the stress of “acting normal” at school used to make him although he looks forward to returning in September to “see his friends”. HIS FRIENDS. And, to me, this is more important than anything else.


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