Can I love MPS?

The other day I watched my eldest, T, shooting zombies on a computer game and telling me enthusiastically about the gun he’d just got (ON THE GAME!) and how machine guns were the BEST. I sighed and wondered why with all the amazing toys and books we have around, it is simulated violence that wins out.

And then I had a bit of an epiphany.

His brother, Pudding, may laugh at cartoon violence but he will never get involved in blood-thirsty shoot-outs.

I read a lot of blogs about other disabilities and one of the discussions that I find both fascinating and thought-provoking is differing views of autism. Parents of children with autism often struggle to adjust to this different world and use strongly emotive language about it. Whereas adults with autism will point out that autism is a part of them and to say you hate autism is to say you hate them.

That discussion has often made me think about how I refer to MPS – I’ve frequently said I hate it and wonder what adults with the same condition would say about this. The trouble is, I guess, that when I write I often use MPS as short hand for ‘Mucopolysaccharidosis Type II (Hunter Syndrome) – the severe version’. It’s just simpler to write. And whilst there are adults with other types of MPS or the attenuated (milder) end of Hunter Syndrome, there are NO adults still living with severe Hunter Syndrome for me to ask.

If my son was diagnosed with cancer or caught a life-threatening illness, that would be less complicated – I could rail against that to my heart’s content. But MPS? Without MPS he would be a completely different boy. How can I hate something that is a part of him? And yet, how can I not hate something that will take him from me before he becomes an adult?

And yet, and yet, and yet. There are bonuses to having my boy with MPS. The lack of interest in violent computer games is just one of many.

He may never tell me he loves me but he will also never scream ‘I hate you!’ in the heat of an argument.

Pudding aged 3He may not ever find ‘the one’ special person in his life. But to him, everyone is special.

He will never get drunk and fall in through the door at 2am.

He may not join in nursery rhymes but he will also never disturb the whole street by playing thumpingly loud music.

He will never judge anyone based on their race, religion, gender or any other construct of society.

He will always need help with things but will never look at me with contempt because I can’t manage the settings on my phone.

He will never demand the latest toy craze because ‘everyone else has one’.

His uncomplicated joy in life is contagious.

And he may attract stares sometimes but he will also continue to bring many wonderful people into our lives.

There will always be the health aspects of MPS that I rail against and if I had a magic wand I would cure him in an instant. But there are things that I can celebrate about MPS as well. My emotions and thoughts around this topic will probably yo-yo though the months and years depending on what is happening around us. (I think another blog post is forming in my head about separating out the different aspects of health/disabilities and what it is that actually bothers me.)

But the one thing that will never change is that Pudding is my gorgeous boy and I love him with all my heart.

Speech

‘He still can’t talk!’

It was just a comment from a six-year-old outside Pudding’s school. Honest surprise that in the term since my little boy had left mainstream his speech hadn’t miraculously improved.

What that child didn’t know is that his words made me cry. It had been a pretty rubbish day for a variety of reasons so I guess his comment affected me more than it would normally.

But the hard truth is that Pudding says far less than he used to.

Speech and language therapy (SLT) was the first intervention that we had, starting when he was two years eight months, even before he was diagnosed. I had heard all the usual comments –  ‘Mine didn’t talk until he was three’, ‘He’ll probably start speaking in full sentences’ – but I knew that something wasn’t right. It wasn’t just that Pudding didn’t speak, but it was his lack of understanding too.

Early SLT sessions started working on trying to encourage two words being put together. Not just ‘More!’ but ‘More apple’ or ‘More juice’. We never got anywhere with that one!

Slowly though, his understanding of instructions improved and his vocabulary climbed to over 50 words. He even managed to work on his own sentences – in 2015 we were over the moon when he came out with ‘Where de moo?’ as the pantomime cow went backstage. Getting on the trial (which should in theory halt any deterioration in the brain) I thought that his language may continue to improve though I never hoped for any miracles.

In the last year or so I have lost that hope. Slowly, so slowly that we barely noticed, many of his words have been lost. He still chats away in his own language but recognisable words are fewer (with the exception of some random outliers – ‘Des a Bunny!’ shouted at top volume is a joy to hear).

Pudding wearing a crown of flowers and grass.

At the end of term we of course got a report from his new school and it was a lovely read. Apart from one sentence that suggested a target for him would be to use ‘Yes’ in appropriate situations. He actually did say ‘yes’ even before ‘no’ appeared (an early sign that he wasn’t an entirely normal child!) and continued to use it really well. Yet now, ‘no’ is often used for both.

He used to melt hearts with his enthusiastic ‘Dank Kyou!’ but he doesn’t say it anymore.

He used to shout ‘Duck!’ when Sarah and Duck came on TV.

I’m not even sure when I last heard ‘Mummy’.

I have come a long way with acceptance in the last year. It used to be that when I saw a young child chatting away to their Mum my heart would sink as I wished that I could have that with my Pudding. I know now that that will never happen. And the other week I was so proud of myself for feeling nothing but simple enjoyment as I overheard a conversation on the bus where a lady was answering every question under the sun from her inquisitive two-year-old. I marvelled that it didn’t hurt as it always had.

I can be content with my Pudding as he is, but I don’t want to lose any more of him. After the latest positive hearing test, I can’t stick my head in the sand and put his lack of speech down to hearing loss. It may still not be the start of the long slow Hunter Syndrome decline, but I have to face the possibility that it could be.

And that is a scary thought.

Football

I suppose it’s inevitable that with World Cup fever sweeping the country (a little more muted now England is out) my thoughts should turn to football.

When I gave birth to my second boy, I dreaded the fact that my life would probably become dominated by the sport. Giving in to demands for the latest prohibitive kit, standing in the rain by a soggy pitch cheering them on, fighting to watch my own programmes on TV if football is on. With one boy I might have got away with it, but surely not with two?

Maybe I should be careful what I wish for, but it seems I did get away with it.

T has never really got into football at all. He’ll join in a kick-around sometimes, but has always been much more keen on Lego or role-play games. He’s inherited my own cack-handedness when it comes to ball games!

His younger brother seemed completely different. Almost as soon as he was walking without falling over, Pudding loved football. His left kick was super-strong and shockingly accurate. This was going to be his strength I guessed. I knew he was behind on language and other things but on the football field he would shine. Once he got over his habit of picking up the ball and running away that is. (We did think for a while that he was more suited to rugby!)

But the months went by and we were punched in the guts by his diagnosis of MPS, and that prospect became less likely. His mainstream peers got faster and more agile. They learnt the rules and were sometimes less tolerant of Pudding’s tendency to interrupt the flow of the game.

He will never know the camaraderie of working together on the pitch or supporting his favourite team. Some Manchester City players visited hospital when we there and Pudding was happy to show off his football skills and say hello. But he had no concept that other boys his age would have been over the moon to meet some real live football players. He has completely ignored any games shown on the TV – apart from Footie Pups on CBeebies!

So it looks like I’ll never be a football mum.

I can’t really mourn something that I never wanted in the first place. But what I will continue to mourn is the condition that has taken this away from him.

Of course, he doesn’t know any different. He still loves kicking a ball around and grins widely if he scores a ‘goal’. His favourite treat in the world would be a big field, a ball and lots of people he loves there to play with him.

Pudding in the garden chasing a ball with a big grin on his face.His joy in football is infectious. And I’m happy to meet him there on his own terms.

Micklegate Madness

Despite appearances to the contrary (after all I love acting, and share a fair amount of my life on here) I’m not actually very keen on standing out. I’m more of a keep-quiet, blend-into-the-background, kinda gal.

Pudding however, has a habit of turning things upside-down. And I’m not just talking about the kitchen bin here. He challenges me to change my life too. Four months after his diagnosis I shaved off all my hair to raise money for the MPS Society. The response was brilliant and the final total was over £3000.

Three years on and I’ve seen many people taking the effort to do fantastic fundraisers. I’ve toyed with various ideas and I’ve felt bad that I’ve not got round to making any a reality. Part of it, I know, is down to struggling with my own demons. That’s about to change but it’s not down to me.

pudletA couple of months ago I got a message with a proposal (no, not that sort!). I’ve written before about how much the support of friends means to me, and one lady has featured in a previous blog when Pudding was invited to her daughter’s party. Her message suggested the frankly quite stupid idea of driving an engine-less soapbox cart down a steep hill and wanted to know if I’d like to be part of the team and raise money for MPS. Once I had established that I wasn’t expected to step foot in said cart and just had to help push, I of course had to reply a resounding ‘Yes!’

Don’t worry – the cart has brakes and is part of an organised event, so I’m fairly confident that my friend will still have all her limbs by the end of the day. The Micklegate Soapbox Run has been held on August bank holiday the last two years and is already a brilliant local fixture. Some other lovely ladies have been persuaded/bullied into joining our team, the cart is looking great and Danny’s Daring Damsels will soon be flying down that hill.

But now of course, I have to do the bit that I find difficult – to ask whether anyone fancies sponsoring us! The link is on justgiving, so it’s dead easy and I will love you forever. So will Pudding. Though to be fair, he loves everyone anyway…

Don’t forget, if you’re in York on the day you can come and cheer us on!

(And before anyone else says it: I know ‘dame’ would probably describe me more accurately than damsel, but it didn’t sound as good, so there!)

Other people’s children

I have a confession to make. I judge other people’s children. All the time.

You know when you’re in the supermarket and you see some parent pushing a trolley past, piled high with rubbish, followed by their kids who are kicking off loudly about something or grabbing more stuff off the shelves? Or you don’t even see them – you can hear a child having a tantrum three aisles away? And you shudder and think ‘What terrible parents. I’ll never be like that’.

I used to be one of those superior people, judging other people’s parenting skills, or lack of them. But since Pudding was diagnosed with MPS I’ve read so much more about autism, PDA and other conditions and try to be more understanding. I know now that the child in question may be having a meltdown because of the challenges of being in an unfamiliar environment like a busy supermarket. That parent may want to get some vegetables into their daughter, but may have no option but to cater to a restricted diet (some children WILL starve rather than eat unfamiliar foods). That boy may have severe learning difficulties and be unable to keep their voice down or be compliant.  Yes, of course there can be some terrible parents out there but how can we ever know what is going on with someone we encounter without actually walking in their shoes?

IMG_9299No, what I’m talking about now is the way other children react to Pudding. I judge them by the way that they judge him.

I’ve been thinking about this for a while now – ever since witnessing a particular game of football that Pudding gate-crashed in our local playground. The reactions that he got, even from children who knew him already at school, varied really widely. Some fantastically accepting and others…not so much. The same holds true of other children we meet when out and about.

They seem to fall into distinct categories.

The Embracers – these are the children who don’t just accept Pudding and all his marvellous ways: they encourage him to join in their games and welcome him with open arms. They quickly realise that he can’t perhaps do as much as them physically or mentally, so they set the goal-posts lower (as it were) and celebrate what they have just helped him to achieve. Goal!

The Questioners – these children notice his difference and want to know more. Why won’t he talk to me? Why is he being so loud? Why is he in a buggy? The other day in a cafe a little girl asked question after question and her mother told her off for bothering us too much but I really don’t mind all the questions. Children can only learn about the world around them if we give them the information they need. And very often the Questioners end up becoming an Embracer. When we left that cafe, the girl waved goodbye to him and was rewarded with one of his brilliant smiles.

The Borderliners – although I can read Pudding like a book and know that most of the time he is approaching someone to make friends with them, some children don’t see it like that. Some, often smaller ones, find him a bit scary. He’s big. He doesn’t act the way they are used to. I understand. I usually explain that he can’t talk and he just wants to play. Some will run away crying. Some will tolerate him but not really engage. And that’s ok. It is hard to take in something new, but at least they are not being actively horrid. Unlike…

The Sneerers – can you guess, my least favourite category! These children have ‘that look’ on their face as soon as Pudding appears. Annoyingly, he seems drawn to them. On a recent trip to Yorkshire Wildlife Park, we spent some time in one of their fabulous playgrounds and Pudding approached three boys who obviously didn’t want him there.  I tried to direct him away from them but he went back again and again. On the third time as he opened his arms and smiled at them with his usual ‘Ehyyyy!’ one of them wrinkled his nose and said, ‘What on earth are you doing?’  I could feel my shoulders tensing up but I still tried. I told them that he was just a little different and asked if they had not met anyone different to them before. I knew I wasn’t going to win them round though. The answer I got was a sneering ‘No’. The next time he approached, Pudding kicked one of them. Although I told him off, inside I was secretly cheering.

I’ll be honest with you: the Sneerers stay with me. After those sort of encounters I’ll play it back in my mind, invent responses I should have said to them. Wish I had told them that if their brain was being destroyed by a genetic condition they might act a bit differently too. Wonder if I could have handled it better. And it makes me sad to think that they might grow into the sort of adults who go on social media to throw vile comments at anyone who is ‘other’.

It can be a challenge going out into the world and never knowing what we will face that day. But this is how disability becomes invisible – if the pressure of everything being too difficult (whether that is lack of facilities or the attitudes of chance encounters) makes us stay at home instead then we become part of the problem. I’ve come to realise that we will always encounter the Sneerers, but if I let them get to me then the negative has won. What I should be doing is celebrating the Embracers and welcoming the Questioners. They are the good ones, the ones who can change the world for the better. They are the people that I would want to stand up for Pudding and others like him. Even the Borderliners might be brought to see the benefits of accepting difference eventually.

What sort of child do you have? And what can you do to ensure that they become an Embracer if they aren’t already?

 

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Facade of fortitude

In my last post I was really pleased to be able to share a documentary that featured Pudding and me. And even happier that it’s been shared and viewed by so many people. I’ve always said that the more times his lovely face is seen, the more chance there is that someone somewhere will recognise MPS the next time they see it.

What I have more issues with though is the comments that follow. Nobody has said anything horrid – quite the opposite in fact. I’ve written about this before. Strong. Brave. Amazing. Inspiring. All lovely things to say – but it doesn’t really feel like they describe me. In fact it makes me feel like a bit of a fraud. I can think of a few words that describe me better – grumpy, lazy, unreasonable, demanding, to name but a few!

Joking aside, just like anyone I’m a mixture of positive and negative aspects. Just an ordinary person trying to cope with this frankly sometimes shitty hand of cards that I’ve been dealt. You would all do the same. You really would.

Whilst I feel like I’m nothing special there are others in the MPS community who I think are. They are dealing with the same horrible diagnosis but with an extra helping of difficulty: money troubles; single parenthood or a troubled relationship; no family support; two or more children with the same condition. They are the amazing ones.

Maybe I have the words to express our story better than others but again I’m not special there either. I haven’t really written about the blogging event I went to last week (apart from just a smidgeon of gushing about the lovely Gethin Jones). But it was a brilliant evening celebrating the writing of many better people than me. It also served as a reminder that while Pudding’s condition is life-limiting, it is not at present life threatening. Two very lovely ladies stood out for me – Little Mama Murphy (writing about her profoundly disabled son), and Living with Lennon (Lennon sadly died in August last year). Both their awards were very well-deserved. They too are the amazing ones.

I’m ok with not being amazing. There will always be the times where I feel like a fraud or know I’m acting strong despite all the fear and anxiety churning along underneath ready to drown me. But for me, it’s enough to be enough. As long as I have the love and support around me that helps me to keep going. As long as I can make my gorgeous Pudding break out into irrepressible giggles. As long as I can feed my family and juggle those appointments. And as long as I remember to allow myself the occasional wobble without losing myself completely, then that’s fine with me.

Pudding in front of some greenery. He looks a little pensive or worried.Perhaps I should change the tag-line of my blog – Facing the future with a facade of fortitude…?!

Video

When I started this blog I chose to make it semi-anonymous, not using names or making our location clear. It felt important to keep the family’s privacy, particularly as T might not want things shared when he’s older.

Yet I also want to raise awareness of MPS of course, and sometimes those two aims collide.

A while back we were approached to take part in a documentary being filmed by a final year film student. I agreed, knowing that it would be pretty much impossible to not use names in something like this. But after all, if it looked rubbish and I hated listening to my voice I’d never have to share it.

It isn’t rubbish, and I’m not actually wincing when listening to myself. Hopefully it does a good job at capturing the highs and lows of living with a Pudding.

I’ll carry on with the pseudonyms because it’s habit now, but if you click on this link here we all are

(Thank you, Josh, for doing an amazing job. Hope you get good marks!)