Magic moments

Those of you who only read our blog on this website may be forgiven for thinking our life is pretty miserable at the moment. The way I write has changed a bit over the years and now I mostly use Facebook to update people of the everyday fun things and cute pictures. And I save my emotional ramblings for a ‘proper’ blog post.

So, my dear website readers, I owe you an apology. Because despite all the struggles and difficulties and horrible decisions, our life is often not miserable at all. There are many, many magic moments and I want to tell you about a few recent ones.

Posting

img_20190114_1802069195b15dAt home, it’s very rare now that Pudding will concentrate on anything for long other than TV. Even playing with cars on his garage which used to be a real favourite only lasts a minute or so now before one of them gets thrown. So when he does truly focus on something I hold my breath and revel in the moment. I just adore the concentration on this face as he posts each chocolate coin into the tin.

Christmas performance

As some of you will remember, the last Christmas performance Pudding was involved in at mainstream didn’t go all that well. He was grumpy and hitting anyone in reach and I watched in tears. This year, his first in specialist provision, I wasn’t really sure what to expect apart from organised chaos. That bit was certainly true, as children careered across the stage in inappropriate moments, forgot words and stood excitedly waving at parents. But it was the best organised chaos I’ve ever seen.

Each class were singing or performing to a song that they’d chosen or helped to write. There was warmth and enthusiasm in bucket loads and I was already in tears when one child who’d chosen to do a solo lost it in front of the audience and was rescued by staff members who gently encouraged him to keep going and finish the song with aplomb.

Then came the moment I’d been waiting for. It was time for Pudding’s class and ‘Let it snow’. When he is let out of his chair it’s a toss up as to whether he’ll join in something or just run away. But he went straight to the bucket the teacher was holding, reached in and pulled out…an indoor snowball!

The joy of schools like this is they can play to individuals’ strengths and boy, did they play to Pudding’s strengths! He threw those snowballs with all his usual enthusiasm into the crowd of cheering teachers and children. And I cried of course – but this time it was definitely happy tears.

PECS (Picture exchange communication system)

img_20190121_1554311055b15dDue to the deterioration of his brain from MPS, Pudding has lost skills over the last year, including most of his speech. So any achievement that he makes is huge to us. So I loved reading the following in his home-school communication book:

‘P has two symbols on the front of his PECS book and today he went inside his PECS book to find the symbol he wanted  – biscuit!’

Typical that the motivator was about something to eat, but I don’t care. Communication is communication, and for him to actively search out the card he wanted shows a leap in understanding of how it works. Even little advances like this might make it possible for him to let us know what he’s after.

Snowballs

You might have gathered how much my Pudding loves throwing, and indoor snowballs have been a godsend lately. They certainly hurt a lot less than most other things that get launched at us! But that’s not why I love them so much. The reason is plain to see in this video – his utter joy when playing is inescapably infectious.

So is our life sad? Well, aspects of it can be, yes. But these magic moments are more than worth living for. Even just the daily routine of watching him watch TV – seeing his ever-expressive eyebrows and hearing those deep chuckles – lifts me out of the abyss.

Pudding is our constant. We may go out to work, school, volunteering; we enjoy time away doing things that he can’t join in with and it’s important that we have a break. But it’s always a joy when we return to him, the pivot around which we revolve. He is the heart of our family and I wouldn’t have it any other way.

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