Over the next few months there are going to be a fair few Jacob related meetings. He’s due to have his Statement of Special Educational needs converted to EHCP (Health, Education and Social Care Plan) following the Children and Families’ Act 2014. He will start year 9 in September and we will start thinking about transition to adulthood and I really need to start his Wikki. (A sort of “all about me” on line document)
The pre-meeting meetings have started and I’m reminded by professionals that it’s important to concentrate on what he CAN do rather than what he can’t. Up until now I didn’t know why this statement really grates! It’s always been the same. “Obviously this is all about what he CAN do” etc. It’s like a red rag to me, but up until now I’ve bitten my tongue because to be honest, I didn’t really understand why I hated the statement so much. I’ve only just worked it out and now it seems so obvious. I always thought that being endlessly positive undermined the seriousness of Jacob’s disability and its impact on our lives. However now I know it’s far more fundamental than that.
I’d been thinking about his EHCP and maybe because of the term “care plan” I’m reminded of my nursing days. I would write a care plan based on an assessment of activities of living. We used the Roper 12 activities of daily living. Nursing models and theories were very much part of the academic side of the job. I wrote essays on them, critiqued them and we had to use them on a daily basis at work, tedious but necessary. (Nursing friends, do you still use this model? Surely you’ve smoved onto something more this century?) We’d assess what care was needed as a result of looking at how these activities were effected by whatever had happened to our patient, illness, accident, surgery, you get the idea. If I ever have to write anything about Jacob describing what he’s like I use this model as a starting point. A bit sad I know but it helps me to detach myself a bit and made sure I never left anything out.
Anyhow the other day unrealised that Jacob can perform two of these activities independently and some of them are tricky with support from an adult. (maintain body temperature and breathing, that’s if you forget about the panting and breath holding he does, a behavioural response to something or other no professional can really pinpoint) Top of the list of daily activities and perhaps most importantly is “maintaining safety”. So, OK he can maintain his own airway (A thing nurses are concerned with) but he will always need supervising, by an adult 24 hours a day as he has no understanding of danger or of how to keep himself safe. I’m reminded of how soul destroying filling in the Disability Living Allowance forms is. They ask things like “how far can he walk without pain or assistance” Well if only it was that simple. Once his up on his feet he’ll keep going, but I need to constantly within grabbing distance to stop him running towards cars to try and spin their wheels and he could decide he can watch them better from standing in the middle of the road. We take him out to all sorts of events and activities but I sometimes think he’d be just as happy standing in the carpark watching cars come and go!
So I’ve decided to speak up at meetings now I understand what annoys me so much about “what he can do”. Yes, he can choice between yogurt or cake for pudding, but he can’t tell me he’s hungry or thirsty. Yes, we know what sort of things he likes doing because he chooses to do them over and over again, but he can’t tell me he’s in pain or feeling unwell. He has quite a high pain threshold and I usually only know he’s feeling unwell if he seems grumpy, I give him paracetamol and he perks up! He will always need full time care so inevitably that means we will need to rely on carers to know him and love him like we do. So to professionals who think it’s important to concentrate on what he CAN do I’d say “Why?… Because it’s what he CAN’T do that that makes him so vulnerable and that’s what keeps me awake at night”