Birthdays

It’s birthday season and I find it hard to believe that my little Pudding will soon be six years old. I look back on pictures of him as a baby and it’s like looking back on a different world. One in which he had so much potential, so many possibilities in front of him.

However, this is our world now and as with Christmas I think we’re going to get it right. Pudding loves birthday cake and being the centre of attention, but otherwise doesn’t really ‘get it’. Give him a wrapped present and he’ll grin widely and then chuck it away. So, we’ll do things the Pudding way.

Pudding holding a wrapped present and smiling.I’m not planning a proper party where he’ll be expected to do things properly. Instead we’ll just be going to our local soft play centre and suggesting to a few friends that they join us there if they’re free. And I know he’ll have a lovely time running around and playing football and building with the bricks. And I’ll have a slightly less lovely time running after him and trying to distract him from the cafe counter and the ball pit (his aim when throwing balls at other kids’ heads is devastating!).

Part of me feels a little bit guilty for taking the easy option, but truth is that the easy option really is better for both of us. Some day I just need to let go of the idea that ‘normal’ is the only way.

Of course, ‘normal’ is still what I’d like quite a bit of the time. I’d love my child to welcome other children to his birthday party and go to theirs. I’d love him to help me pick out the right presents for his friends and get excited that there’s only one sleep to go before a party. But we don’t get all that.

Pudding has only been invited to one party so far this school year.

Of course, he doesn’t know or care, which makes it easier certainly. There are other children out there though who do know. Children who see everyone else in their class getting invites or talking about the fab time they had. Children who want to have friends and don’t understand why they get sidelined. It is heartbreakingly common for children with learning difficulties or other disabilities that set them apart from the crowd.

Which made it all the more lovely to hear a positive birthday story recently. One lady in a Facebook group I belong to for parents of children with SEND sent out a message to all those children who never got invites. She wanted them to feel included for once so offered an open invitation to her son’s birthday party. Even people she had never met were welcome to come and join in the fun. How wonderful is that?

Of course I don’t expect everyone to do that (and I’m also not angling for loads of invites to land on our doorstep!) but wouldn’t it be nice if children with SEND were included, properly included in all areas of life. We can’t force children to be friends with someone, but I suppose what we can do is take the time to encourage them to think of others. To reach out to someone who seems lonely. To see that someone who acts a bit differently to them is just different, not wrong.

It feels like I’ve moved off topic a bit, but I guess what I’m saying is that special occasions such as birthdays often serve to highlight how different life is for us than how I expected it to be.

Different, but not wrong…

Audiology (sort of)

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.

Pudding watching TV in the hospital playroomThe 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.