Conference 2019

Saturday was the hottest day of the year so far, and what was I doing? Rubbing away goosebumps in a conference room in Coventry…

We’ve just spent the weekend at the MPS Society Conference – a weekend of talks, coffee, cake, chatting, more cake, more talks, partying and talks. Full on and exhausting, but most definitely worthwhile.

We’ve attended events each of the last two years, so you might think that there is not much more information I need to take in. Yet there are always some useful snippets that I pick up on, something to reassure me about the next steps we’ll be facing. I won’t bore you with the many details that I scribbled down in my notebook – info about changes in the corpus callosum relating to behaviour, warning signs to look out for as swallowing function declines (oops, I just did!). We’re lucky with the health professionals we see in Manchester in that any questions I have are always answered. But sessions at conference often answer the questions that I didn’t know I had.

And as always, it’s the chance to talk to other parents and individuals with MPS that is almost more important. Chatting with others who just get it.

Unlike in previous years we didn’t take Pudding with us – the date coincided with the weekend we’d been offered respite at Martin House Hospice. It did feel a little odd being at an MPS event without him, but in a way he was very much with us still. Walking down the corridor to our room, I could picture him thundering down the very same corridor two years ago. Helping myself to juice at the breakfast buffet I heard a little voice in my head, shouting ‘Du!’. And of course, every snippet of information that I stored away was one that will inform his future.

bananaT had a super time in the children’s programme (trip to Drayton Manor, magic show, DVDs and more sweets than I could possibly approve of). But it occurred to me that maybe one of the greatest benefits to him of the weekend was the chance to be play with us and be silly, released from the responsibilities of having to be the sensible big brother  while we concentrate on Pudding. (Yes, that is him and Hubby having an inflatable banana/guitar duel.)

And last but not least, I stepped way out of my comfort zone by standing up on stage to sing a solo in the MPS talent show!

It’s strange writing this today, exactly four years on from the confirmation of Pudding’s diagnosis. Back then it would have been too overwhelming, too difficult to contemplate choosing to spend a whole weekend immersed in the MPS world. I would have sobbed my way through the first couple of talks before hiding in the loo. So much has changed in the past four years, and while not everyone will find the same path through this life, for me embracing times like this can certainly have positives.

Pudding smiling in a red ladybird jacket.

(If you’d like to see some of the highlights from the weekend, have a look at this video. You might spot me!)

Inclusion

I’ve still got a rather warm, fuzzy feeling going on today. Why? Because of the weekend that Pudding and I have had.

Weekends when Hubby and T went up to visit the in-laws used to feel really LONG. But this time I think we had it sussed. Saturday was a respite morning and we’d cunningly planned good weather in the afternoon so Pudding alternated watching TV with coming out and helping me in the garden (by making me play football). After a miserable few months of rain and cold he is really enjoying the freedom of being able to bob in and out whenever he wants. And what is more I had such fun with him too – his enjoyment allowed us to have that lovely connection and appreciation of the moment.

But Sunday was even better because of the time spent with others. One of Pudding’s classmates from mainstream was having a science party and he was included in the best possible way, that is, on his own terms. The party started at 11am but as we were welcome to turn up for any or all of it (Pudding and chemical ingredients don’t mix all that well!) we arrived just in time for his favourite bit – food! The birthday girl and a friend immediately ran up to show him the slime that they had made, and another girl helped encourage him to finish his lunch and saved him a cake. When we went outside afterwards to set off rockets, Pudding loved joining the others to chase the lemonade bottles that had been launched into the air. Then he proudly showed the one he was carrying to all the adults inside.

Often encounters outside the house can be fraught with my worries of Pudding’s behaviour being judged and that makes it difficult to let go and relax. But yesterday so many of the children and adults engaged with him, treating him as just a normal part of their lives that I can safely say I’ve never enjoyed a children’s party more.

There was a slight low point in the day when Pudding escaped out the gate that I hadn’t closed properly and ran off down the road. But hey, even that has a silver lining – he actually stayed on the pavement and didn’t run straight into the road – so we’ll skim over that episode, eh?!

Pudding and me running along track through green spaceEarlier in the morning we didn’t have any particular plans but at the last minute I decided we’d go to the Parkrun. For those of you who haven’t heard of this (where have you been?) these are free weekly runs organised by volunteers. The adult one is 5km but locally we also have a junior version the next day which is only 2km. The fantastic thing about parkrun is that it truly is open to everyone, regardless of ability. Everyone is welcomed, supported and included. We’ve been a few times before and Pudding has never made it anywhere near the whole distance – true to form his instinct is to veer off in the opposite direction to everyone else and we use various tricks and encouragements to keep him on the right track. But that simply doesn’t matter at all; the volunteers celebrate each little inchstone with us, offering high-fives and cheers. This time we got further than ever before, probably still less than 1km, but it felt almost as much of an achievement as those running the London Marathon on the same day. (Almost!)

Pudding thrives on the company of others. He runs in his own peculiar gait with a massive grin on his face. And it puts a big grin on my face too. This really is inclusion at its best.

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…