Getting Christmas right

Peace on earth and goodwill to all men….

Not always true at Christmas! Close proximity to relatives, too much food and over-excited children can be a recipe for disaster in any family. Then you add into the mix a child with special educational needs, and BOOM!

But, this year Hubby and I are quietly congratulating ourselves on getting it right.

Pudding wearing a Christmas hat surrounded by books.

In the run-up to Christmas my Facebook and Twitter feeds were full of other SEND parents dealing with anxious or autistic children finding it hard to deal with the change in routine. Most children love the release from lessons for nativity plays, Christmas crafts and so on, but for some it is an incredibly difficult time. Thankfully, this is not an issue for us – all the excitement just passes Pudding by. When other adults ask ‘Is he looking forward to Christmas?’ the simple answer is  – he doesn’t have a clue. I recently wrote about him being cognitively around the level of a two year old. But how many two year olds don’t understand about Santa and presents?

I’m glad that we could still enjoy all the Christmas preparations with T (any reservations he had about Santa’s existence disappeared when December came!), but this year I let go of the need to include Pudding. It’s not fair to ask him to help put out mince pies for Santa when he’ll just want to eat them himself.

It’s not worth buying him lots of presents when he still hasn’t played with many that he got last year.

There’s no point wrapping presents when he doesn’t want to open any. (Endearingly, he looked so happy when given a wrapped parcel, and did wave it around happily showing everyone, but then wandered off.) I just put his things in one big gift bag that he then tried to stuff Hubby’s slippers into as well.

Pudding watching a film on his tabletOn Christmas Day itself, he woke up a bit later than usual so T’s stocking was already open and I was free to get Pudding’s breakfast – definitely more important than presents in his view! Later he did his usual thorough job of pulling all the books off the shelf while we opened our presents. We had a lovely walk in the woods with Sister and family, where he could chase around with his brother and cousins. Then he pretty much watched films on his tablet for the rest of the day while we relaxed*, chatted, played games and drank.

So we might not have given him the perfect picture-book Christmas, but we gave him the perfect Christmas Day for him. And to top it all, at dinner we discovered that he loves roast parsnip – what a day!

 

(*  Special shout-out to Sister and her partner for sterling work in the kitchen to allow this. I made the vegan main, and the Christmas cake but that was about it.)

Trial Update

So we’ve reached that cliff-edge a little sooner than I thought.

Today, Shire (the pharmaceutical company that is running the trial) released this press release. I’ll give you a moment.

Read it? Confused? I’ll see if I can translate….

Now that all the boys have completed their first year on the drug or in the control group, Shire have looked at the data. Specifically they were looking at those dreaded cognitive assessments and seeing how they differed in the boys receiving the drug and those who weren’t. And these results haven’t shown enough of a difference to take the drug forward for approval.

To be honest, I’m not that surprised. Pudding hates the tests almost more than I do, and for the last two times at least has refused to do tasks that I know he is capable of. Why should he draw a circle for the man when he knows there is a football outside that he could be kicking down the corridor? These old-fashioned cognitive tests simply don’t work well with our MPS children. (And yes, clinicians and parents have already been telling them this.) Also, a year is such a short time to assess change in a long-term progressive disease.

So, the pharmaceutical company is going to now look in greater detail at the results from each individual to see if they can pick out useful trends and data. Many families – particularly those with boys who have been on it for years – can tell them of so many ways in which it is working for them. But I simply don’t know if in the end, that will be enough. In the meantime, Pudding and the other boys already enrolled on the trial will continue to receive their dose as usual.

So, it’s not the worst news, but it’s also certainly not the best. We’re teetering on the edge of that cliff and all we can do is wait. And for those families hoping for this treatment to be made more widely available, the wait is even longer.

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(This is my first blog post for a wee while as Hubby has been doing some behind-the-scenes work transferring the website to a new home. Hopefully I haven’t lost anyone in the move. If a few email subscribers could wave to say you’ve got this, that would be great!)

Paperwork and assessments

Paperwork. Every SEND parent’s favourite thing. NOT!

Endless pages of assessments that never really become easier. The joys of having to answer ‘No’ to question after question about everyday skills that any unaffected five-year-old could do with ease.

When Pudding first entered the clinical trial his DQ (development quotient) score was 56 (so 56% of what another child his age would get). That put his abilities at around half his actual age. Two years later I don’t know what it would be now. He’s nearly six and I often describe him as functioning like a two year old, but although that’s true in some respects it is way off in others.

The last few weeks I’ve been filling in information for the Imagine ID project. This large-scale study aims to collect data from families on how genetic conditions affect development in children. I’m not complaining really, because it is something I have chosen to do – research is important. But I must admit it doesn’t always put me in the best of moods having to face up to the realities of Pudding’s abilities.

Some of it was pretty straight-forward – other questions not so much. For instance, it’s pretty difficult answering a question like ‘Does he blurt out answers in class more or less than other children his age?’ when he is non-verbal! And I’m not quite sure it’s worth getting him to do the ‘fun drawing task’ as it will just be a scribble.

Anyway, I’ve now had the report through and it confirms (if I didn’t know already!) that he scores high for troublesome behaviour, attention difficulties and sleep.

And then we have also had the review meeting for Pudding’s EHCP (Education and Health Care Plan). This is a document that sets down what a child needs to have put in place to help them succeed at school. It is certainly more positive than some forms (yes, DLA form, I’m looking at you!) as it looks at what he has achieved alongside setting targets for the next year. For instance, this time we were able to put a tick next to ‘Can take his coat off’!

But again, it can be a bit brutal facing reality. The educational psychologist had been in to assess him and I was asked for permission to change the way Pudding is described from ‘moderate learning difficulty’ to ‘severe learning difficulty’. The teachers did apologise when asking this, as they were concerned about how I would feel. Looking at the descriptions though, I know it makes sense. When Pudding was first diagnosed he was at playgroup and his differences weren’t quite so obvious. As time goes on, he is progressing but at a far slower rate than his peers, and that gap is widening and widening. So that’s another label he’s acquired.

And on Tuesday it’s our next trip to Manchester with …guess what… the psychological assessments again!

But of course, none of these assessments will ever truly give a picture of Pudding is like. They can tell someone that he is non-verbal, prone to violent outbursts or that his DQ is hitting new depths. But they can’t tell anyone how gorgeous his smile is. Or how he does a funny little dance when he’s excited. Or how much we love him.

Which is why I’m getting better at looking past those forms and reports. And instead I keep in my mind pictures and memories like this morning when T went upstairs to get Pudding up. I watched on the monitor as my big boy sat on his brother’s pillow and gently stroked his head, telling him that he’d put his cereal out ready. I watched him bend down and kiss Pudding and help him turn the duvet down. And I knew that these little moments are what life is really about.

 

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