As we approach the end of our enforced lockdown period, we emerge different versions of ourselves. Some of us are stronger having found solace in working out, some of us are a little softer around the edges having sought comfort in binge watching box sets on Netflix and Amazon Prime. Then there are those of us who stepped up top the plate when our schools closed and knocked it out of the park with home schooling.
No matter what type of person we were when we entered this lockdown, we’re all leaving it a little changed, a little different, a variation of our former selves. My own experience of it has been overall a positive one; it didn’t start off that way – we were refused access to our son’s SEN school without explanation despite fitting 100% of the criteria for placement and in the nine (or is it ten?) weeks that the country was locked down we heard from the school twice in phone calls which lasted eleven seconds and nine seconds respectively to ask us if any of us had had any symptoms of covid-19. At no point were we offered any teaching, remote learning or support of any kind. Bit of a kick in the tits after the fight we went through to secure the place in that school, I mean it when I say that it’s ‘good on paper’.
Anyway, you know that movie Sliding Doors? This was our Sliding Doors moment. With Bo working across two hospitals which just happened to be the two hospitals dealing with the majority of covid-19 cases in the North East, his workload was higher than ever before meaning he was working later and starting earlier and I continued to work from home with Plankton settling into his new routine.
It took around two weeks for him to get to grips with the idea of the whole whole ‘killer virus’ thing and he still doesn’t understand that social distancing applies to everyone all of the time and not just when he feel like it, but Voyeurs I shit you not, we’ve seen the biggest improvement in his anxiety, violent/challenging behaviour (VCB), and overall wellbeing since the lockdown was imposed. Now obviously I’m not an idiot and I know that there are a huge amount of variables at play here – less transitions, the fact that he completely despises that school with a passion, he’s gaslit by every professional involved in his care and they’ve all had to take a backseat, all care packages have been rescinded, and he’s spending 100% of his time in our care. Like I say, a lot of variables but when you conduct any experiment you always set a control measure, and this is our control measure. Remove negative stress and complicated transitions and there’s a much happier boy underneath, it’s really not rocket science. Now I also know that this doesn’t negate his disability, that’s still there. Evidently something many professionals fail to grasp – if you ever say there has been a positive improvement, no matter how minor within earshot of a professional, it obviously means that your child is cured of their disability and no longer requires access to services.
I remember around a year ago when I sent an email to our consultant at one of the North East Mental Health services about their appalling treatment of Plankton and the way they’d conducted an assessment which I’d later investigated and I felt that it wasn’t clinically robust. I received a very threatening letter from the Estates Manager advising that they had taken legal advice and were going to prosecute me for slander and issue a court order to prevent me from talking about the Trust on social media. At the top of the letter it said POLICE REF: AVAILABLE ON REQUEST. I spoke with the police and sent them the letter by email, obviously you know where this is going….. The police asked me if I wanted to open a harassment case, I declined but took a PRN from them and fired a letter back to the Estates Manager of the Trust. Needless to say I got a very quick reply admitting they’d told a massive fib with an apology. As for the assessment I investigated, I took it to the Complex Neurodevelopmental Disorders Service (CNDS) for a second opinion and sure enough the conclusion was that “the assessment was not clinically robust or completed in line with NHS guidelines and is therefore not a valid assessment”. The moral of the story is that employed, paid professionals are not the experts in your child. You are.
Quite late on during the lockdown Plankton was added to the shielding category, I think it took a long time for them to find him because he’s the only person in the UK with his genetic abnormality and deletion syndrome. His particular chromosomal abnormality makes him more likely to develop certain cancers and diabetes; he also has a moderate/severe learning disability, Sensory Processing Disorder, Fragile X, global development delay and another rare syndrome called Reverse Angelman Syndrome. Pretty unique right? When they say one in a million he’s more like one in a trillion. He also loves Most Haunted but I’ve heard there are *some* other people out there who like that show. Anyway for safety it was time to bring this kid indoors a little more permanently.
Now the thing with lockdown life is that it’s perfect for a lot of neurodiverse kids and adolescents. It shuts the world out, it shuts out noise, transitions, stress and all the things that make life hard and difficult to understand. The thing that Plankton finds most difficult is adults not directly involved in his life – Disability Social Worker, Teacher, SENCo, HLTA etc. Answering questions for him and making decisions on his behalf when he’s right there and able to do it himself, if they just gave him a little more processing time. I mean it’s written in his Education Health Care Plan (EHCP) FFS, what more direction do they need? But then it’s so much easier for adults to gaslight teenagers isn’t it? We’ve seen it so many times in meetings and there’s only so many times you can watch people do that to your child before you realise that you have a platform and you can blow the whole thing up whether it fits with your regular subject matter or not.
I mean I figure I have a pretty smart thirteen year old kid, he hasn’t progressed academically since year five when he was in the most amazing mainstream school with a full time one to one support who I genuinely believe had his best interests in everything she did. After that when NHS Mental Health became involved and mandated a school move, everything went to shit. He (and we have) been treated like shit by everyone we’ve come into contact with since then and it’s not uncommon, we aren’t the first family and we won’t be the last. There are hundreds of FaceBook groups dedicated to families in situation like this and the North East is a major hotspot for it.
He’s inquisitive and interested in current affairs, he loves fashion (I mean come on, that was always going to be the case), weirdly is obsessed with true crime and ghosts, and architecture and we try to feed him with facts and knowledge where we can. He holds grudges but does it silently so whilst he might be polite to someone, he lets us know afterwards that he really hates someone which we think is absolutely hilarious. His painfully honest critiques of people’s outfits are incredibly satisfying working in my job too. In lockdown his personality is developing as fast as his hair is growing.
With the end of lockdown potentially in sight and new research available for the clinically vulnerable who knows how far away we are from this being over and our new normal being established. One thing is for certain though, my son entered this crisis in a state of trauma. Not because there was a global pandemic – he had absolutely no idea at that point, but because he was at crisis point himself with the wrong school placement, the wrong support in that placement, professionals who continued to gaslight him and total sensory overload at a respite placement that bombards children with activities that adults think are child-centric but aren’t. He’s gained a sense of priority for himself. He’s learned that he has purpose and that his own opinions are as valid as anyone else’s. We might not have done any home schooling but he’s made more progress at home in lockdown than in the entire time he has been in this particular school placement (since September 2018) and that’s more than enough for us.
Pixie
