I’ve yet to read all 132 pages of the Government’s new White Paper on SEND (special educational needs and disabilities) Reform that was published yesterday. Mainly because I’m too tired. And too sceptical. SEND parenting will do that to you. Like most of the 1.7 million parents who advocate for children with special educational needs, I’m weary of the battle, tired of being let down and generally all too familiar with constantly having to downgrade my expectations for our son, even on the most basic of fronts.
What I really want to read about are new models for education and tailored support that can identify and nurture his many qualities. I want to read about consistent access to mental health support so he can successfully navigate the challenges he faces and about positive ambitions for his pathway to adulthood. But really, I just want to read about hope. And that’s why I’m nervous to get into the detail. Sadly, hope isn’t a currency SEND parents trade in that frequently.
Just before he was two, our son Dexter was diagnosed with a rare genetic condition (2q23.1 microdeletion syndrome). The outcomes of his diagnosis have been a learning disability, ASD (autism spectrum disorder), undiagnosed but almost guaranteed ADHD, a non-functioning colon (which has resulted in a stoma) and a penchant for seeing sleep very much as a side hustle. Before he was diagnosed, we were routinely fobbed off by people who had us pegged as neurotic parents and, to be honest, getting fobbed off has been a running theme throughout our parenting journey.
His educational pathway started with the typical protracted battle with the local authority to secure an EHCP (educational health care plan), a show of resistance that was then kept up by most of our local mainstream primary schools. Of the six schools we viewed, at least five went out of their way to discourage us from applying, ranging from a subtle, ‘Where do you live? Oh, goodness, such bad traffic on that road, your journey will be horrendous’, to the more laser focussed, ‘We wouldn’t be able to offer you a place because the adjustments we would need to make to the school are unreasonable.’ (‘Unreasonable adjustments’ being access to a disabled toilet, in case you were wondering.) Once we got over those hurdles, we had a relatively good primary school experience, thanks in no small part to an amazing SENCO (special educational needs coordinator) who fostered an incredibly inclusive environment and took Dexter under her wing.
The wheels didn’t come off until we reached secondary stage. By year five, it was clear he would be too vulnerable for a mainstream secondary school, so we started exploring special schools, a journey I wasn’t in any way emotionally prepared for. I fought back tears as I walked round the first school we visited, a dark imposing building that had been adapted on the cheap, where cabinets were locked and staff looked grey. The main special school for ASD in our borough, in all honesty, felt like a prison. We saw brighter, lighter environments across London, where children looked happy and staff seemed engaged, but it turned out he was ‘too academic’ for these environments.
We did find one school in a neighbouring borough that felt close to be being the right environment, that seemed to bridge that gap between mainstream and special school in a way we hadn’t seen once anywhere else in our extensive search. At the open day, we were told there was no point in applying. They’d had over 100 applications for 24 places the previous year and most had gone to children in borough. We named it as our first choice school anyway. The local authority tried to consult with the school. We wrote a pleading letter to the head. Just silence. We could have appealed, gone to tribunal, tried to make a case for this being the only school that could educate our son. But it would likely have cost us thousands and put us through inordinate emotional stress. We would have also probably lost the battle, so we stepped aside.
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He has ended up at a school which is, on the whole, designed for children who have a condition that doesn’t affect him. It’s a small environment with a range of academic abilities. The atmosphere is calm. The staff are kind. Is it right for him? Not in my view. In the 18 months he’s been there I have seen him regress, not just academically but behaviourally and emotionally, too. Increased obsessions, a lot of communication via the routes of shouting and screaming, a big spike in his PDA (pathological demand avoidance) and a new level of aggressive meltdown, as well as other challenging behaviours which mean – at 13 years old – we still can’t really leave him alone in a room for more than a second. I feel like he was better supported in a mainstream class of 30 than he is in a class of 7. He masks well at school but by the time he gets home it can be an explosively different story.
In the lead up to his transition and throughout his time there, his anxiety levels have continued to escalate to catastrophic effect. He’s been offered psychological support from Great Ormond Street [GOSH] but only in a hospital setting, which makes it completely inaccessible because he has clear hospital trauma thanks to numerous invasive procedures. He had support from CAMHS [Child and Adolescent Mental Health Services] in the last few months of primary, but that dried up as soon as he hit special school.
CAMHS say it’s the school’s job to provide psychological support, the school says his struggles are ‘outside’ their areas of specialism. We were referred to the NHS Dynamic Support Register who promised to pull together a 360 support plan for the entire family involving school, CAHMS, GOSH and community services but the sum total of that turned out to be four sessions with an occupational therapist. The end.
No one really offering any strategies to help in the frequent periods of chaos (‘maybe if you make him a reward chart?’, sigh), no chance of respite (and yes, you absolutely do need respite when you are parenting a child with needs), no real expertise, if I’m honest – the occasional voice somewhere saying, ‘yes, yes, that does sound tough’ and then off you go back to the erratic juggle of parenting in the dark.
The SEND system has been in mounting crisis for years and I don’t think the proposed reforms really offer much detail to allay parent’s fears. I’d like to read about a proposal for a school where my son can thrive, not just a rebranding of the levels of support in existing institutions that can’t meet his needs. I’d like to read about accountability and positive ambition rather than feeling like he’s just being babysat until he is someone else’s problem. To be honest, the school system is just one part of the problem. We’ve eradicated teaching and social care as valued professions and society’s most vulnerable children, young adults and adults are paying the price.
Our parenting journey is emotionally and physically draining, sometimes downright brutal and lonely. I often lie awake at night gripped with an abject fear for the future. Our unique, funny, kind, bouncy, sharply honest, occasionally overly dramatic, dapper little boy brings so much light into the world. The battle for it not to be extinguished is real.
