Disability

Yesterday was the International Day of People with Disabilities. The perfect time for me to write about something that’s been on my mind for a while. Only, true to form, I’m now a day late…

(I should also point out that it was originally called International Day of Disabled People, and many disabled adults that I follow would prefer it still to be so. If you are interested, there is a wealth of information out there on the social model of disability v the medical model.)

It took me a loooong time to describe Pudding as disabled. At first all we knew was that he was a bit behind his peers, then came the mention of development delay. But still I thought he might ‘catch up’. The diagnosis of MPS (mucopolysaccharidosis) meant having to alter all our preconceptions about what his life would be like. Yet I still didn’t really think of him being disabled.

Looking back I know it is down to deep-rooted beliefs about the word itself. I saw it as a fairly narrow definition for those with obvious physical differences. And, dare I say it, I saw it as a negative. Neither of which I wanted to use to describe my son.

Growing up I never really had much exposure to disability. I didn’t see many people out in society, very rarely on TV (although there is still a long way to go, this at least has changed massively since). At university I did volunteer for a project working with disabled children and young adults, but even in that context language and attitudes surrounding it never came up. Later I did know a few disabled people, but again the conversations just didn’t happen. So until Pudding’s diagnosis I was ignorant of so much of society. And I do feel guilty of that.

Pudding smiling widely seated in his wheelchair wearing a bright red coat with ladybird spots.

Over the last few years I’ve followed blogs and listened to disabled activists on Twitter. I know that disability is not a dirty word. I know that many disabilities aren’t visible. I know that an estimated 22% of the UK population is disabled in some way. And I use the word regularly to describe my son. Pudding IS disabled – both physically and mentally, and also by society in general. And that does not mean he himself is any less value as a person.

And yet, in a conversation the other day I felt bad for using the word. I was speaking to someone I’d only recently met and they asked about my work. Unlike the first years after diagnosis when I felt almost compelled to throw into conversation the awful prognosis of MPS, I tend to avoid it now. So I replied that I didn’t currently, that my son was disabled and ‘it was complicated’. Very true. Yet my tone obviously implied more, and their response was to say ‘I’m sorry about that’. That made me worry that I am continuing to perpetuate the outdated notion of disability being solely negative. But I don’t want to come full circle and kill conversations with the bombshell of ‘he’s got a life-limiting disorder’.

Some day I’ll find the right way to respond to a simple question!

Why MPS Awareness now?

A couple of days ago I wrote on Twitter that it felt strange shouting about MPS Awareness Week at a time like this. After all, why should anyone care about a rare condition that no-one has ever heard of, when they’ve all got their own worries at the moment?

But the more I think about it, the more relevant it does seem.

I suppose it also follows on from my last post – Trapped – that I’d completely forgotten about until coming on here just now. (Unsurprising. It was written a whole two months ago.)

Covid-19 has brought the whole world to a standstill. Normal life no longer seems real.  People are worried about the future, worrying about whether they can still work. Dealing with stomach-churning anxiety when doing the simplest of tasks. Stuck indoors and isolated from everyone else. We clap the NHS every week.

Welcome to the world of an MPS parent.

IMG_20170109_180120Listening to the emotions that many are going through during lockdown brings back memories of the time we were first told that Pudding had MPSII (Hunter Syndrome). It was a bombshell, rocking our world. All plans went out the window. I felt like I was stuck on a rollercoaster, my heart constantly lodged in my throat and life became more about hospitals and than school sports days, and NHS staff became my heroes. As time went by, Pudding’s behaviour often made it easier to stay at home away from other families who would point and make rude comments. Isolation among MPS families (as with others dealing with disability) is common.

But the analogy doesn’t hold up for long.

Covid-19 is a horrible virus, that spreads easily and has caused many deaths. But we will see an end to the chaos eventually. Scientists are working flat-out on vaccines and treatments. And until then, unless you are in one of the vulnerable groups (which include many people with MPS) there is a good chance that you will pull through.

Some types of MPS do have better treatments right now. But particularly for those with progressive MPS 2 or 3, once the crisis of Covid-19 is over, the future still doesn’t look bright. Once we have been handed that diagnosis we know what the future will bring, and it is not one that any parent wants to hear.

I don’t mean to underplay this trauma that everyone is going through right now – after all, we’re going through it too. But I hope it explains why I will still shout louder about MPS awareness at this time.

Please join me on Twitter or Facebook on the 15th May in wearing blue (or purple internationally) – we’d love to see your pictures.

Memory

So what does it mean when I say that MPS is a progressive disease?

Things change, but ever so slowly. Skills lost so gradually that I barely notice until months later when I’ll suddenly realise that something else has gone. And sometimes I don’t remember at all.

I know that he’s lost pretty much all his language now, and can list off many of the things he used to name when we looked at books together – cow (moo), bird, cat, clock, fish, shoe and so on. I can still hear his voice in my head sometimes but I wish I had so much more on video. 

Pudding in the garden chasing a ball with a big grin on his face.But Facebook reminded me the other day that he used to say ‘kick’ or ‘roll’ in context too. Both long gone. Even the way he plays football has changed – his skills used to be amazing and he can still wow strangers with his kick. But these days he’s more likely to simply pick the ball up and run away with it – of course with a big cheeky grin.

The way he used to say ‘Thank you’ would melt your heart – also forgotten until another MPS mum mentioned it recently. And just yesterday a memory came up from five years ago that he’d tried to sing ‘Twinkle Twinkle’. I literally cannot remember this at all, can’t even picture the possibility.

Maybe it’s just my memory keeping me safe from mourning too much. Maybe I’m getting better at living in the moment.

But sometimes I’m scared that I’m forgetting too much. And I want to preserve all these precious ‘last times’. Gather them up and hold them safe, even when I can no longer hold him.

Letting go

I think over this Christmas period I’ve found the secret to happiness.

That is, I’ve found it before, but never really known how to articulate it. Letting go.

Letting go of the way things ‘should be done’. Letting go of preconceptions. Letting go of the idea that the opinion of strangers actually matters.

It’s a path that many parents of disabled children have to travel. We have all sorts of ideas about how parenting will be: the experiences from our own childhood that we remember and want to repeat with our children, and those that we want to avoid; the plans for their future – school, university, work, marriage. And then the slow realisation that things are going to be different to our expectations.

Maybe that journey goes faster for those with disabilities apparent from birth, I don’t know. With a condition like MPS though, when development is relatively normal at first, the realisation is slow. Painful at first.

Pudding with an enormous smile, watching TV

Over the last few years we’ve gradually adjusted to Pudding’s world and at Christmas I think it’s even more apparent how far we’ve come from what I would previously have planned. He is at his happiest with his beloved cartoon films on tap, and getting plenty of attention from people on his own terms. So that’s what we do. Christmas for us now is at home, with family visiting. TV stays on.  We don’t buy any presents for him – he doesn’t need anything and isn’t interested. This year, he even stayed asleep in bed until we’d opened all ours anyway. He definitely doesn’t feel that he’s missing out and I no longer feel guilty about that. I’m letting go!

How things ‘should’ be done really doesn’t matter. What matters is what makes Pudding, and us as a family, happy. This Christmas in our still-feeling-new house is probably one of the best I can remember. Letting go doesn’t mean giving in, or necessarily accepting second-best. Instead it’s developing new traditions and finding the joy in small things.

I don’t really make new year’s resolutions, though I do sometimes have aims for the year. But maybe this should be the theme for my year. Letting go, and finding the joy in small things. There are definitely worse ways to live.

I hope 2020 will bring each and every one of you some joy too. xxx

Today I cry

Today I cry.

This morning I should have got in a taxi to the station with Pudding, caught a train to Manchester and arrived at the hospital. We would have had a lovely greeting from his fan club of nurses and other staff. He would have had a dose of the potentially life-saving drug, just as he has done every four weeks for the last three and a half years. And we’d have whiled away the next four hours with playing and TV in between medical observations.

I am sure that we have made the right decision in withdrawing Pudding from the clinical trial. But that doesn’t stop it being hard. And so I cry.

I cry for the loss of hope. I cry for the loss of his future. 

Pudding with a massive smile, laughing at someone just off camera.

I cry that after three and a half years one of the boys on the trial finally learnt my name and now we won’t see him again.

I cry for the skills he has lost and those he has still to lose.

I cry for the other boys with Hunter Syndrome that never even had the chance of this hope. And I cry for families that have been on trials before that were ended with no choice or input from them.

I cry for the strength I will need to deal with things still to come.

Today I cry. But not for ever.

I don’t have the time. For one thing, it’s production week for our play right now and I’m too busy to spend long in the emotional depths. But also, I think of the reasons that we actually made this decision. One of the huge positives of this choice is to give us more time to enjoy away from the clinical hospital side of things and I am determined not to waste this.

Every time over the last few weeks that I have looked at my gorgeous Pudding, my heart melts even more. And every time I cuddle him, I hold on just a little bit longer. Every minute has become that much more precious.

Less than a week after we saw the consultant for that life-changing discussion I did a talk at Martin House Hospice during their Open Day. I used a talk that I’d written for them on a previous occasion and hadn’t got round to updating it much. Reading through it just before, I knew there was one paragraph that I would struggle to get out without being too emotional and that’s because it had taken on a particular poignancy since I had written it months before.

And most of all Martin House has taught me that a hospice isn’t just a place about dying. Coming here is definitely about having the space and energy to live life to the full and celebrate what we have. And whether we have days, weeks, months or years to spend with our life-limited children, it’s important that we spend them living, not dying.’

And that is what I intend to do.

MPS Parents

Today is MPS awareness day – the fourth I’ve marked since Pudding was diagnosed with Hunter Syndrome in July 2015. Whilst I have come to more acceptance of the condition, I can never ‘celebrate’ it.

But what I can celebrate are the other wonderful parents that I have met because of MPS:

The parents who spend weeks in isolation with their child through a bone marrow transplant.

The parents who travel across the country to sit for hours by hospital beds.

The parents who want to be there for procedures but can’t leave work.

The parents who have to stay strong so they don’t crumble in front of their kids.

The parents who can no longer physically manage caring duties 24/7 and have to welcome strangers into their house.

The parents who have no option but to soldier on with no help whatsoever.

The parents who encourage their kids to achieve whatever they can.

The parents who have to make decision after difficult decision.

The parents who learn to take on the role of nurse as well, accessing portacaths to administer treatment.

The parents who hold down a screaming child for yet another needle.

The parents who fundraise and push for new treatments.

The parents who are reeling in shock at one child’s diagnosis and are then told that their baby may have it too.

The parents who step into the unknown on clinical trials knowing that it might not even help their child, but may pave the way for the future.

The parents who have had to give up hope of seeing a treatment in their child’s lifetime.

The parents who dreamed of planning university and weddings and instead plan their child’s funeral.

The parents who are watching their child slip away bit by bit.

The parents who have already lost their child.

The parents who wish they had never heard those three little syllables, M. P. S.

The parents who are convinced that they are broken, that they cannot fight any more. And those same parents who carry on regardless, day after day, because that’s what parents do.

The parents who will love their child, for ever and for always.

You are all amazing. You are all stars. I wish I could send you all chocolate and flowers but virtual ones will have to do…

IMG_6520

 

 

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.

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!)

Looathon

The theme for this year’s MPS Awareness Day on May 15th is ‘My MPS Hero’. I think most of you will be able to guess who that is for me!

But today my heroes are completely different.

I’ve mentioned the campaign to get more Changing Places toilets installed before. Although provision is growing, there are still however only 1104 in the whole country. To put that into context, research suggests that there are over a quarter a million people with severe disabilities who cannot use a standard accessible toilet and need the extra facilities that a Changing Places loo provides. A quarter of a million adults and children who have no choice but to either stay at home, sit in their own waste or be changed in inadequate conditions.

Today to highlight this issue there is a fantastic group of people sitting in a Bathstore shop window in Baker St, London with their pants down. Shocking? Not as shocking as lying your child on a toilet floor.

Some people have criticised this way of raising awareness, saying surely it’s better to put together a petition, speak to government and try to get the regulations changed. But do you know what, all those have been tried already. Maybe this way, people will actually sit up and take notice and wonder what it is really like to have no rights to dignity. After all, any one of us could end up with a life-changing disability and be in this situation too.

looathonAs Sarah Brisidon, the pants-tastic organiser of this event says, she’s doing it ‘because my little boy (& every disabled person) deserves more than a toilet floor’.

If you want to get involved and can’t get down to Baker St in person to gawp (um, I mean support), you can take your own #looselfie and share on social media using the hashtag #Pantsdown4equality

Here’s mine! It’s only a small contribution, but the real heroes are those who keep on campaigning for change and will go to almost any lengths to make it happen.looselfie

 

PS. Once you’ve finished celebrating these heroes, don’t forget to wear blue on 15th May for MPS!

Conference

Timetable for the MPS ConferenceQuite a few people commented yesterday about the nice weather we’ve had this weekend. I know there was sunshine but I barely saw it as I was sat indoors in a dark room listening to presentation after presentation at a conference.

Not most people’s idea of fun, but I loved it. Because this was the conference organised by the MPS Society. It gathered together individuals, families, clinicians, surgeons and experts on mucopolysaccharidosis and other related conditions in the Hilton Hotel, Coventry. The whole hotel to ourselves, so no-one around to raise eyebrows at the wheelchairs dancing through reception or a child trying to make a break for freedom being chased down by a harried parent. From the moment we were greeted by the friendly MPS staff, we knew we were amongst family.

Pudding smiling up at camera before climbing into the car seat.

There is no doubt of course that living with MPS can be a stressful business, so the weekend started off with a session on mindfulness which Hubby found very useful. T and I managed to sneak in a visit to the hotel pool and then we were ready for dinner, the kid’s disco party and the chance to get to know other families. It’s a slightly surreal experience to meet people that I’ve only ever seen in photos until now, and greet them like long-lost friends. But that’s what it’s like when we’re tied together by this bond. MPS is no respecter of age, background, education or race and it forges close friendships that last through the years.

On the Friday evening we also got to meet our volunteers – wonderful wonderful people who gave up their weekend to take our children off and give them a fantastic time while we sat and listened to all the presentations.A few capsules on a ferris wheel It was a little nerve-wracking to send a challenging child like Pudding off with a complete stranger but I cannot sing their praises enough. For the brief hour that I saw T on Saturday – in between their trip to Drayton Manor and the evening entertainment – he talked non-stop about their volunteer and how great he was.

On to the main business of the conference itself – talks on all aspects of life with MPS, from cardiac complications, behavioural issues through to new treatments round the corner. Some of the presentations weren’t for the faint-hearted; Hubby had to look away when faced with slides on carpal tunnel surgery (not me, I find that sort of thing fascinating)! Some were more challenging on an emotional level – looking at Pudding’s future face-on can be a scary thing. And then there were the inspirational ones, like a teenager talking about living with MPS I (Hurler-Schie) who refuses to let it define her.

Air-con vents on the ceiling of a coachThere was more emotion at the Gala Dinner on Saturday when awards were presented to those who’ve made a difference to the MPS community. People who’ve gone above and beyond to raise money, campaign for treatment or support others. I might have cried just a smidgeon. I blame the wine. Afterwards there was time to let our hair down and have a go at some funfair games while the childcare volunteers continued their stirling work. We even got a little goody bag with items donated by a few companies.

The weekend was inspiring, disheartening, informative, tiring, relaxing and wonderful, and I can’t wait till the next one.

(The photos I have are mainly alcohol-fuelled Saturday evening ones on my phone, so I am illustrating this post with T’s slightly random pictures!)