We met with a teacher at Middly's school this morning because he is miserable (as he always was at the two schools he attended before this one and he hasn't finished primary school yet). Middly (who has had a diagnosis of ADHD and ASC since he was six, he's ten now) has only been there a few weeks. There are things about this new school (non-academic things and the people) that he likes and they are super important. I am so grateful already for those things and those people! He just hates all classroom lessons and is very sad and despondent on all school days. In Middly's mind, lessons weigh more on him than the good things.
This is our first experience of a more specialist school - of a school where Middly is the same as all the other kids - the same, in the sense that they all find traditional ways of learning a significant challenge but each one is unique in their particular challenges - that's why they are there rather than at completely mainstream schools. He certainly likes not feeling 'different' all the time now.
The teacher we met with is a marvel. She gets him. She is invested in and committed to unpicking what has made him (and is currently still making him) so resistant to his classroom subjects and to gradually coaxing him into understanding why he needs to and must engage. She and her colleagues are clearly working hard to improve things for him and support him. We were greatly reassured and we feel hopeful that he might make some real progress. Rome (and the ultimate Middly) were not built in a day.
Middly is a smart little chap but his processing speed is super slow and he currently refuses to/cannot engage in school work that he thinks is boring. The school do now recognise that when he only completes or even attempts a couple of questions in 40 minutes, that is not necessarily because he can't but because he can't see the point. Sounds cussid and naughty if you don't know and accept that a very real part of ADHD is not being able to make yourself engage in things that don't interest you.
It's really hard for children (as opposed to adults) with ADHD, in particular, because they just don't understand and respond to the idea that not engaging now will cause problems later in life when you have no qualifications and don't know and/or can't do lots of the important things that people around you do/can! There's no meaningful instant gratification from investing in boring school work when you're ten with ADHD. Add into the mix a child who presents with ASC as well as ADHD and the list of things that do genuinely interest him is super short and often very niche. Teachers who can unpick children like Middly, work them out and teach them successfully are wizards of the finest variety. I salute them and thank them all for being who they are and doing what they do.
It's not a secret that many of the people who the world are in awe of are, or are now reasonably assumed to have been, neurodiverse (Einstein, Alan Turing, Simone Biles to name just three).
Today's children who are a little different in these and other ways need nurturing and supporting properly if they are going to do similar and even more marvellous things. So, it is a travesty that SEN support and assistance is so underfunded, under-prioritised, slow and difficult to access in England.
How lucky we are to have been able to afford to send Middly to this VERY expensive, private, semi-specialist school with a great reputation for helping kids like him. How lucky we are considering what an absolute joke the EHCP process is in England. It has been our experience so far (and we are at the beginning of our EHCP war), and the experience of everyone we speak to who has ever had the misfortune of fighting for an EHCP, that, because local authorities are underfunded/don't appropriate enough funds to SEN and also generally don't have to back-date financial support for children who's invested adults have managed to fight their way through to getting an adequate EHCP issued (or even to get any EHCP issued at all - even an inadequate one), they purposefully and brazenly string out the process for as long as possible, causing families to go through enormous stress, invest a lot of time and energy and often money too just getting for their children what they need and the law says they are entitled to.
To be assessed for an EHCP, a child needs only to be reasonably suspected of having SEN - they certainly do not need a diagnosis - though clearly a diagnosis removes any 'suspicion' of SEN and is a giant flashing neon sign saying 'SEN here, please help'.
How is it possible therefore that yesterday, Middly, diagnosed over four years ago with ADHD and ASC, was refused even an assessment? And via a letter containing multiple spelling mistakes - one of many examples indicating the decision was rushed, poorly reasoned and frankly, in breach of the guidelines and law that govern EHCPs? We only got a reply at all yesteday because the solicitor we have employed to stand on the front line of our EHCP war - again, lucky us being able to do that when so many can't afford to - chased the LA after they missed the deadline to come back to us with a response. Most depressingly, we were told by our solicitor in advance of even applying for an EHCP that an initial rejection was the most likely outcome and that we'd almost surely have to appeal multiple times before the inevitable caving in of the LA and issuing of the EHCP there is no question Middly needs and is entitled to have.
But in all that time (probably two years that it will take to get to that point) we will have paid the fees at his specialist school, we will have paid the solicitor and we won't get any of that back (that'll be well into six figures to put a ballpark on it). Not one penny back. And probably if we manage to get his current school named on the EHCP, it will only be because the LA realises that paying his current school's fees is considerably cheaper than funding the one-to-one teacher he would need just for him in a state school to even have a chance to semi-cope in a class of 30 or sometimes even more children.
But at least Middly will be at a suitable school for the next two years during the EHCP war (a war that he, thankfully and mercifully, won't even know is happening). What about all the children in totally unsuitable settings who can't afford private fees for an independent specialist school / to fund extra help in their existing school, or a solicitor? What about all those children who are struggling so much where they are that they are not attending a school anymore whilst their adults try to navigate their EHCP wars? It's wrong and it doesn't get anything like the airtime it deserves in the press and, more importantly, in the government. It's not the sort of issue that the political parties can even reasonably disagree on. It's about helping kids who are already at a disadvantage (compared with kids without SEN) get the help they need to allow them to show the world the magical things they are capable of - things that benefit society as a whole because it is very often the people who think differently who do the most amazing things.
In other news, I finally slept last night. I think my body is understanding the Elvanse and the Circadin a little better. Rome, Middly's most successful self, England's proper and efficient support for SEN children and me in harmony with meds were not built in a day.
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