Hey ADHDers and allies, this week’s blog article is about never giving on trying to get the right support, whether that be for you or your child. To prove that point I’d like to share something that happened recently that I hope will give you courage and inspiration.
The other day I found myself attending a mediation meeting for a dear friend, whose son has had huge difficulties in accessing school due to emotional regulation amongst other issues. My friend has very kindly agreed to give parts of her account to this blog article, in the hope that it might help others in a similar position.
“Seven years of fighting the system to get my son a diagnosis and relevant support & over three years of emotional-based school non-attendance, with little flexibility, takes its toll, not only on the child, but on the parent advocating for them. It is exhausting physically, emotionally, mentally, and financially.”
~ Friend
My friend completed what is called a parental EHC (education, health and care) application/referral. Basically, any parent can submit one, even if a school SENCO (Special Educational Needs Coordinator) refuses to do so and sometimes it can be helpful if a child is masking (hiding their difficulties) in school.
“All a parent wants is that their child is happy, safe, secure, able to access an education and to be able to function in society. Having jumped through every hoop I have ever been asked to jump through for so long, without impact, is soul destroying. Going into meetings, waiting for the battle, breaks you down bit by bit.”
~ Friend
The outcome from the local council was to reject the application due to lack of evidence over school provision and progress and so we went to mediation, which is the step before you appeal in the hopes of getting things resolved in a more efficient manner. So, my friend who knows I have ADHD (diagnosed for 27 years now; go me!) and thinks her son has it (along with autism) invited me along as her support representative.
Now I’ve only ever been in one mediation meeting before and not as a support so I confess to being slightly nervous but the mediator (from a disability charity) did a fantastic job of being professional and impartial in the proceedings. I must admit I might have left out on the mediation the little fact about me being founder and director of ADHD and Me, I kept that card very close to my chest.
My friend to put it simply was incredibly brave and did amazing, she was so comprehensive in terms of detailing her child’s issues and guess what came up time and time again? Emotional Dysregulation, struggles in the morning, wants to participate in school but can’t, even the SENCO said he struggled to focus in a school environment for goodness sake!
Now it was mentioned during the course of this meeting that this child had passed the QB test (quantified behavioural) Something which sadly is increasingly being used as the ONLY measure for diagnosing ADHD. It involves the child using and following technology. Now the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders), though it lists set ADHD characteristics/ criteria, doesn’t explicitly state how it should be diagnosed. When I was younger a psychologist had to come to both school and at home to observe behaviour over a six-month period, that’s not the case anymore.
I wasn’t sure I’d even be asked to speak in the meeting. Well, when I did, I began by saying that this child’s symptoms pointed to ADHD possibly combined with Autism. We’re seeing a huge increase in a diagnosis of the two combined which means that it doesn’t display as typical ADHD behaviour nor typical autistic behaviour because sometimes one can compensate for the other. I also pointed out that emotional dysregulation, lack of focus and memory issues are all classic signs of ADHD, but the fact this child acted differently depending on which age group he was surrounded by and is very literal also pointed to autism. I reminded them the key here was consistent support for both the child and the mother because emotional burnout is a very real thing. I had to leave the meeting early due to another commitment, but my friend messaged me not long after.
“The council overturned their decision not to assess for an EHCP (Education, Health and Care Plan) I sobbed during the meeting listening to ADHD girl talk about my son & the battles that he goes through on a daily basis and the battles that I go through for him; it literally broke me.”
FRIEND
All anybody wants is validation for their own experience, more so when it’s their child they have to watch struggle on a daily basis. Yet, sometimes the system that’s meant to be a form of support becomes a way in which to accidentally gaslight people and puts them off seeking further support.
So, what’s next? After all, getting the EHC assessment is like winning a battle, not the war. It still doesn’t guarantee at this point a full EHCP, but it is a good place to start.
“People say you must be really happy but genuinely no. I am relieved that this part of the battle is over, and I am hopeful that now we may start to get some consistent, targeted and personalised support for him.”
friend
For people such as this, there are further hurdles to overcome and they are preparing a battle cry, not because they have the strength, not because they haven’t been beaten down, but because at the centre of this is a child that needs the war to be won just so they have a decent chance at an education.
Stories like this are an inspiration, they remind us that while not giving up is hard, things can progress if you fight hard enough for them to.
“I cannot thank ADHD girl enough for her support, not only as a friend, but also as somebody who knows what it is to be neurodiverse, and to look after those with neurodiversity. Her ability to discuss and raise points around neurodiversity and expectations of councils and schools was invaluable.”
Friend
