Those of you who follow us on Facebook will know that we ended up in A&E on Monday night – nothing serious – just being checked out when Pudding started vomiting following a head bump. Both the doctor and I thought it was unrelated but we had to be sure because of course he couldn’t tell us how he was feeling. It got me thinking about what Pudding’s learning disability actually means for him and his future.
Many studies have shown that people with a learning difficulty often have worse health than those in the general population. Sometimes that is due to an underlying health condition that also causes their learning difficulty (for instance, Pudding’s diagnosis of MPS). But this is not always the case. When premature deaths are analysed, apparently 38% of people with a learning disability died from an avoidable cause, compared to 9% of those without a learning disability.
I’ll just give you a moment to read that again. 38% of premature deaths in those with a learning disability could have been avoided.
The reasons of course are varied and complicated, but can often be put down to a series of misunderstandings or miscommunications or plain indifference. Take for example, the case of Richard Handley (related here in a slightly sweary way) from a bowel problem. Or that of Connor Sparrowhawk an autistic man with epilepsy who drowned in a bath unsupervised.
All (well, almost all) our interactions with health professionals so far have been exemplary. Take audiology a few weeks ago. Pudding isn’t always very cooperative at appointments but they took their time and didn’t rush us. One lady did a marvellous job of distracting him with toys but at the same time allowing him to listen and react to the sounds.
First she tried getting him to jump the little wooden men into the boat each time he heard a noise but that didn’t work. Pudding just wanted to jump them all in straight away – why bother waiting?! So next, they used the test for much younger children where some puppets light up and start dancing whenever the sound plays. He soon learns that when he hears a sound he can look at the puppet and it will start.
The lovely audiologist in the other room had the difficult task of trying to work out whether his reactions were genuine or whether he was anticipating the stimulus. The results agreed with the last hearing test he had, showing moderate hearing loss. But she wasn’t prepared to just accept that. She wants to be sure it’s a genuine result rather than just the difficulty of testing someone who doesn’t understand why we’re getting him to do this. So we’re going to try again another time, and also have someone observing him in school to see what he is like in a functional situation.
The pediatric specialists we have seen work hard to engage with Pudding and listen to my parental expertise. And I wonder whether part of that is that they are used to dealing with a wide range of ages and abilities. Therefore children with a learning disability don’t really phase them.
But of course, once that child gets bigger and less cute and moves up to adult services, parents sometimes have less involvement in daily support and health issues. The parents’ expertise in their child can be sidelined. Little health problems can be missed and worsen. Not everyone will care enough to worry about every little symptom that appears and look into potential causes.
I will always want to look out for Pudding and keep him safe and happy, but I won’t be able to for ever.
Sometimes I would love for time to simply…..stop.