Joy

With World Down Syndrome Day coming up (21st March – I’ll be wearing my odd socks!) I’ve been reading some lovely posts from parents about their children with Down Syndrome. And of course there’s the beautiful carpool karaoke video that has gone viral – have tissues to hand when watching!

Together they have reminded me of something important.

Being an older mum, I always knew that my chance of having a baby with Down Syndrome was higher. (And yes, I use the word ‘chance’, not risk.) I knew I would love my baby no matter what and having known a number of people with Down Syndrome, was not scared about the prospect of this new addition to our lives. I knew that there would be challenges along the way, but these would be outweighed by the positives.Research shows that the overwhelming majority of parents surveyed described their children with DS as great sources of love and pride.

At birth nothing appeared out of the ordinary and I thought nothing more of it. Fast forward three years and Pudding was diagnosed with Mucopolysaccharidosis, something I’d never been prepared for. Over the nearly three years since then, I have blogged about the ups and downs of living with this diagnosis.

Any regular readers will know there have been a lot of downs and I’ve always tried to be honest about how I’m feeling. And yet…and yet…writing about the negatives sometimes pushes out the positive. With Pudding, despite the challenging behaviour, stress over hospital visits and fears for the future, the positives are definitely there too.

I regularly post cute photos and little updates on Facebook but when blogging it always seems easier to put the hard stuff into words. The good stuff is so much more difficult to describe.

Pudding peering around a tree with a huge cheeky grin.How can I put into words the joy on his face this morning as he leapt onto the bed shouting, ‘Daaaddeee!’? How can I adequately get across what a cute little beetle he is as he lies back and waves his foot at me for his sock to be put on? The softness of his hand as he yanks it towards his tablet insisting that I help him? The funny little stampy dance that he does when he is excited by the attention he’s getting?

The low-points are mainly to do with external worries and my attitude to them but the high points are in my heart.

A number of Down Syndrome posts this week have emphasised the joy that comes with this life. Celebrating that joy, as many families will be on 21st March and throughout the year, is what our children deserve.

Screen time – how much is too much?

There was a post in a Facebook group recently from a mum looking for some reassurance. She was concerned about the amount of screen time that her SEND child was getting and wondering how others dealt with the same issue.

There were lots of helpful/non-judgemental replies (social media CAN be good!) and mine was as follows:

    ‘If I had my way, my kids would only have 2 hrs max during a day. But Pudding didn’t get that memo. He had about 8 hrs today. So hard to get him to engage with anything else, and certainly I couldn’t get anything else done when he’s around otherwise.’

That earnt me some grateful reactions from other parents. And of course there were many others who said similar things. It’s always good to know that your child is not the only one

It’s a subject so tied up in Mummy guilt even with children who don’t have any issues. Am I doing enough for my child? Am I teaching him/her the right skills? Will he/she become addicted to games/be able to interact with others/learn to cope with boredom/get enough exercise. The ramifications are endless and I’ve had more than my fair share of anxiety over it in the past. But lately I’ve just gone with the flow.

Pudding watching a film on his tablet

If screen-time for Pudding is what makes life easier – for all of us – then that is what we do. We work hard to engage him with other things when we can and sometimes we even get to celebrate not putting on the TV until 2pm! (Usually only if we have made it out the house on an outing.) But other days…? Well, if we want to get any washing up done, or prevent T getting hit or have 5 minutes to ourselves, then screens are our friend…

Some of his time is spent playing on his tablet which at least is slightly more educational. Pudding has learnt to do some of the simple jigsaws and can even spell ‘bus’ and ‘egg’ on the Alphablocks app. But he won’t tolerate the tablet for too long. Once he has tired of it, that will get launched at us too. And tablets are quite heavy! So mostly it is TV. And if that is all day, then so be it. It’s easy enough to stop T from over-indulging as well – he has so many other interests so we can read together or play a game or he’ll go and play Lego.

That was all this blog-post was going to be about: a statement that no amount of screen time is too much. But I’ve realised that’s not actually true. For me.

I spend far too long on a screen lately. It’s crept up on me. More and more time scrolling endlessly through social media, falling into that trap of worrying that I’ll miss something, wanting to feel connected. And when I’m not on the computer, any spare 5 minutes I have I’ll pick up my phone to play a game (I’ll not tell you which as I don’t want to be responsible for getting you addicted as well!). More often than not, the 5 minutes stretches to 10 and then 15…

I thought it was an escape from everything else when I couldn’t face the To Do list, but it doesn’t really work like that. Maybe for the 5 minutes/half an hour/two hours that I’m staring at the screen, I stop thinking about stuff for a bit. But it’s still there when I look up again. Only it’s a little bit worse because weeks or months later I still haven’t tackled any of it.

When we were in hospital earlier in the week for two overnight stays (routine blood samples) I bought a magazine called Psychologies. Although part of me laughed a little at the article formats that encourage you to change your life in easy-to-follow steps, I guess somehow it has worked. This morning I woke up determined to be better.

I have done two coats of paint in a cupboard upstairs. And at least three times when that game was calling me, I ignored it and chose to do something more useful instead. My world will not implode if I have less screen time. And I could become a heck of a lot more productive.

I hope I can keep it up. Wish me luck!