Photos

I love looking through baby photos, don’t you?

Those sweet little expressions they used to pull, the chubby cheeks, the memories they bring back…

And there’s the rub. Because the memories can be bitter sweet.

Whilst I enjoy Facebook’s On This Day feature – laughing at the funny things T used to say, or reminders of days out we enjoyed – sometimes it punches me with what could have been.

I might see a photo of the panto we went to a few years ago and realise that Pudding never says anything as clearly now as when he asked ‘Where de moo?’

A photo will come up of a hospital bed, and I’ll be transported right back to those terrible first few months where the only thing that seemed real was the knowledge that I couldn’t escape this nightmare.

Pudding aged 3Sometimes though the hardest photos of all are those from before diagnosis. When I had never heard the initials MPS. Photos from more innocent days. I look at his so-obviously-Hunters face and think ‘How could I not have known? Why didn’t I fight harder to get his delays looked into? Why did I let the professionals’ dismissals over-ride my concerns over the way he looked and acted? How could I have missed what is so obvious to me now?’

Pudding aged 2

But of course I couldn’t have known. I’d never seen a boy with Hunter Syndrome before. I didn’t know what that baby face with its broad nose and big forehead meant. I didn’t know what all the niggling little symptoms added up to. How could I have done? That’s the problem with rare diseases like mucopolysaccharidosis. You rarely see them.

And that’s why I keep on blogging and sharing pictures of Pudding. In the hope that one day, somebody somewhere will recognise these features in their own child and press for a diagnosis.

I can’t stop them feeling all that pain, but hopefully in the future they won’t be the one looking at happy memories and wondering why they didn’t know.

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!

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…

Clouds

Do you ever have one of those days where clouds hang over you and your bad mood just infects everything? Where you spend hours feeling angry/anxious/miserable for no very good reason? One of those days when you wish you’d just given up and gone back to bed?

Yesterday was a bit like that. By the afternoon, lack of sleep caught up with me and everything just became a bit too much.

I got irritated when Hubby bonded with T over computer games rather than getting him to do guitar practice or tidy his room.

I snapped when Pudding ran away with my phone. Again.

I wanted to cry when faced with another load of washing up.

I felt horribly guilty when snatching the rolling pin away from Pudding (again) that I accidentally banged his head with it.

I lost it completely when T refused to eat his dinner ‘because the pastry fell apart’.

I felt sick to my stomach when thinking of potential reactions to a tweet that I never even wrote (yes, I’m expert at catastrophising over hypothetical things!).

And any number of other ridiculous little nothings. By the evening I was a seething mass of bleak negativity. It got to the stage where I was putting off going to bed as I knew that I would only lie there replaying everything over and over which would stop me getting to sleep.

And then just before I went upstairs, something on the kitchen wall at eye level caught my gaze. A bit of wilted spinach that I’d pulled out of Mr Fusspot’s dinner and flung at the bin in a rage. Was my aim really THAT bad?

I’ll have to admit, it made me giggle. And everything suddenly seemed a lot better.

Moral of the story?

Every cloud has a spinach lining!

(I should have taken a picture of the spinach stuck to the wall, but I didn’t think of that. So here’s a picture of the leftover tortellini pie that I spent a significant amount of time making before watching both boys reject it. It was rather tasty!)

Tortellini pie (pasta in a white sauce, layered with tomato sauce and spinach)

Looking back

I’ve been avoiding writing another blog post and it took me a while to work out why. With the New Year comes the time to be making resolutions and looking forward. Yet with so much uncertainty around Pudding’s future at the moment, I don’t think I want to…

So, in order to make myself feel a bit better I have decided to look back instead and focus on some of our achievements instead.  Three from Pudding and three from me:

 

Pudding wearing a felt toy shopping basket on his head.

Pudding’s achievements

I do sometimes find it hard to stay positive about how Pudding is doing, particularly when his speech seems to be declining, but when we look back there are definite improvements in some areas.

  • His ability to focus has got so much better…when he wants! From standing in line in a PE class to knowing that he has to tidy up first before getting TV, it shows not just focus but understanding.
  • School only introduced PECS part way through last term, and none of us expected him to do so well. He grasped the concept of Phase 1 really quickly – learning that if he gives someone working with him the picture of sweets for instance, he will get those sweets. (If I remember, I may do a longer blog to explain all about it – you lucky, lucky people!)
  • We’ve discovered that he loves having little jobs to do and seems to get such pleasure in completing these routines. Putting his socks in the washing machine, delivering the register at school, sorting the cutlery into the drawer and ‘helping’ with the washing up, all bring a big smile to his face and to ours.

My achievements

  • Top of the list – I’m a much better driver than I was 2.5 years ago. I’ve never been that keen on driving and would always do my best to avoid long trips. One MPS diagnosis and countless trips on the M62 later, and I’m a pro.
  • Historically I’ve also not been much of an active person. But I can now go from 0-60 in about two seconds flat when Pudding makes a break for it. And my weightlifting capacity is increasing at almost the same rate as his size.
  • As my third I was going to put that I’ve learnt to be more patient, but I’m not sure that’s actually true. Perhaps I can at least say that I’m still trying, despite the odds! It’s definitely easier simply to put the TV on given the constant demands, and sometimes I do just give in. But sometimes…I don’t. Sounds ridiculous but I consider it a major achievement that this afternoon I actually got Pudding to do a few jigsaw pieces first.

Hubby and T have had their successes too of course. And whatever happens going forward, I know we’ll all continue making those baby-step achievements. But of course the best thing about looking back or forward is this gorgeous face. The face that can turn my rainy day to sunshine even when I’ve had not enough sleep and am grumpy as hell…

Smiling Pudding in profile with blurred greenery in the background.

Happy 2018, everyone!

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.)