Holiday challenges

Trying something new can be difficult. Challenging.

And when you’re making decisions on someone else’s behalf, it’s even easier to stick with the same old things. I know I’m guilty of that with Pudding. I know what he likes and often don’t branch away from the tried and tested. After all, I can’t ask him what he thinks.

CPWe’ve recently come back from a holiday at Center Parcs at Sherwood. A tried and tested formula for us. We go with the whole of my family (parents, Sister, Brother and their children) so there are lots of people around to chat with or do activities. I loved going before Pudding was diagnosed with MPS, and I’ve come to appreciate it even more since. Holidays can be challenging for us in many ways, but I know what we’re getting at Center Parcs. I’ve always found the staff to be really helpful and responsive regarding Pudding’s accessibility needs and they even have a Changing Places toilet in the Sports Centre with another one planned in their pool revamp.

While we’re there, all the other kids get to try out new activities, stretch themselves and their abilities. We find things they like and things they don’t, and that’s ok. And I need to remember that Pudding deserves that chance too.

This holiday I challenged myself and booked him on the Mini Captains Adventure – a boat ride for young children with one accompanying adult. I had suggested that we could draw straws to see who went with him, but no-one else was brave enough!

To be honest, I had no idea what he’d make of it. The success of an outing or activity can depend very much on his mood at the time (and whether he’s had something to eat). But I was prepared for pretty much anything short of being capsized.

It’s often the people we encounter that can make or break an experience for us. I often think Center Parcs have good customer care and the chap running this session was no exception. He was very happy to accept us on our terms and didn’t bat an eyelid when Pudding sat in his wheelchair watching his tablet throughout the safety briefing and instructions.

Grandma, Brother and Sister had come along with us for moral and physical support (very useful when it came to getting the chair across a short stretch of beach), but found it terribly funny when the instructions told us to visit each buoy in turn and note down which picture was on them. I very sensibly decided to ignore them and the instructions!

Pudding looking through the front window of a boat holding onto the steering wheel. I am sitting by him, arm just visible guiding the wheel too.Once the other three boats had set out (again, my decision) we got Pudding out of his chair and took him down onto the jetty. The massive smile on his face made it worthwhile even just for those few seconds. Manhandling him into the right place on the boat was a bit difficult but we did it. And then we set out onto the lake.

He loved turning the wheel, but wasn’t quite so keen on me actually steering so our progress on the water was somewhat erratic! He also loved the occasional person zooming past overhead on the zipwire. I had a feeling though that a good mood wouldn’t last too long, so after a while negotiated back to shore. Seeing his fan club there brought more massive smiles and we even got a picture of him holding his Captain’s graduation certificate.

It was probably the most expensive ten minutes he’s ever spent, but I don’t care. We tried something new!

(PS. I am not being paid for this post and haven’t been asked to promote it, so any advertising is entirely coincidental – just my opinion! Other holiday companies do exist, etc, etc)

Conference 2019

Saturday was the hottest day of the year so far, and what was I doing? Rubbing away goosebumps in a conference room in Coventry…

We’ve just spent the weekend at the MPS Society Conference – a weekend of talks, coffee, cake, chatting, more cake, more talks, partying and talks. Full on and exhausting, but most definitely worthwhile.

We’ve attended events each of the last two years, so you might think that there is not much more information I need to take in. Yet there are always some useful snippets that I pick up on, something to reassure me about the next steps we’ll be facing. I won’t bore you with the many details that I scribbled down in my notebook – info about changes in the corpus callosum relating to behaviour, warning signs to look out for as swallowing function declines (oops, I just did!). We’re lucky with the health professionals we see in Manchester in that any questions I have are always answered. But sessions at conference often answer the questions that I didn’t know I had.

And as always, it’s the chance to talk to other parents and individuals with MPS that is almost more important. Chatting with others who just get it.

Unlike in previous years we didn’t take Pudding with us – the date coincided with the weekend we’d been offered respite at Martin House Hospice. It did feel a little odd being at an MPS event without him, but in a way he was very much with us still. Walking down the corridor to our room, I could picture him thundering down the very same corridor two years ago. Helping myself to juice at the breakfast buffet I heard a little voice in my head, shouting ‘Du!’. And of course, every snippet of information that I stored away was one that will inform his future.

bananaT had a super time in the children’s programme (trip to Drayton Manor, magic show, DVDs and more sweets than I could possibly approve of). But it occurred to me that maybe one of the greatest benefits to him of the weekend was the chance to be play with us and be silly, released from the responsibilities of having to be the sensible big brother  while we concentrate on Pudding. (Yes, that is him and Hubby having an inflatable banana/guitar duel.)

And last but not least, I stepped way out of my comfort zone by standing up on stage to sing a solo in the MPS talent show!

It’s strange writing this today, exactly four years on from the confirmation of Pudding’s diagnosis. Back then it would have been too overwhelming, too difficult to contemplate choosing to spend a whole weekend immersed in the MPS world. I would have sobbed my way through the first couple of talks before hiding in the loo. So much has changed in the past four years, and while not everyone will find the same path through this life, for me embracing times like this can certainly have positives.

Pudding smiling in a red ladybird jacket.

(If you’d like to see some of the highlights from the weekend, have a look at this video. You might spot me!)

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…

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Aware?

May 15th – MPS Awareness Day

I did intend to plan something this year. Something to raise money and get noticed. Make some noise and increase people’s awareness of mucopolysaccharidosis. It’s not really in my nature to draw attention to myself, even so I felt it was something that I should do.

But I haven’t planned anything at all.

To be honest, the last couple of months I’ve wanted to stick my head in the sand and pretend that MPS just doesn’t exist. But of course, my son doesn’t have that luxury. The effects that MPS has had on his brain stop him from knowing what it is doing to him. But I am very aware.

I am aware that his breathing is louder than it was, and he needs to rest more often again.

I am aware that many of his hard-won skills, such as pointing to head, toes or eyes, have faded away.

I am aware that he hasn’t grown in the last six months and is now on the 9th centile for his age (up until he was four he was on or above the 75th centile).

I am aware that he has lost most of the words that he was using.

I am aware that the treatments that should be stopping all this from happening are prevented from doing so by his own amazing immune system.

And most of all I’m aware of what all that MEANS. It means that unless something else can be done we are watching our vital, happy little boy die very slowly in front of our eyes.

Since we moved to our new house six months ago, the practicalities of our situation have been a lot easier to deal with, but emotionally the reality of MPS does hit me hard at times. So although I haven’t planned any awareness events, what I can do – what I have always done – is write.

I write about our experience so that others can learn about MPS; so newly diagnosed families can feel a little less alone. I write to save my sanity and hope that I spread awareness that way.

All the current research points to the fact that the earlier MPS is diagnosed the better; the few existing treatments (and new ones coming through) are much more effective early on while the body is still developing and before too much damage is done. So, please, for Pudding’s sake this MPS Awareness Day wear blue, share a post or two, donate if you can, and spread the word.

I’ll be wearing my blue wig and MPS T-shirt all day, and spreading awareness where I can. Who’ll be joining me?

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Battered

I have a fat lip today.

It happened yesterday when I was changing Pudding. I’m usually on my guard and can stay safe until I’ve managed to distract him with tickles and nonsense, but this time a well-aimed kick when I wasn’t expecting it caught me full on the mouth. It bled a bit and swelled up impressively.

Poor me.

Only that’s not really the full picture, is it? All behaviour is communication and none of it was his fault. He doesn’t like being messed with (who would?!) so sometimes complains vigorously. It wasn’t a well-aimed kick – it was him flailing his legs around to try and get out of a situation he didn’t like. To accuse him of kicking me implies that he is capable of wanting to cause me pain and I just don’t think he could.

Yes, he deliberately hits out and kicks particularly in situations where someone is in his space or he is provoked. But not ever maliciously. There isn’t one iota of nastiness or spite in my boy. And I hope anyone who knows him would say the same.

But in life, of course, we meet many people who don’t know him. And that is why each and every interaction outside our safe zone puts me on edge.

OLYMPUS DIGITAL CAMERAYesterday, we had a trip out to William’s Den, a superb natural-themed play space for families (that also has a Changing Places toilet!). It’s out of our local area so, as I hoped, it wasn’t too busy being that we’re one of the few places where children are still off school. Pudding loved running around the place and exploring. When he discovered the hideout with cushions where some other children were building a den I knew he was likely to start kicking it over, and the children too if they happened to be in the way. They eyed him warily and I dived in as usual to warn, explain and negotiate his way through a world that often doesn’t understand him.

But our story is not really what this post is about. My fat lip was just a reminder about a door that isn’t often opened. A door to an area that many people aren’t aware of: parents who are on the receiving end of violence from their children.

You see, we’re pretty lucky really. Pudding is still good-natured and distractable enough to be managed most of the time. I get the occasional bump and bruise but it’s nothing compared with what some parents face on a weekly or even daily basis. It has been talked about more lately, partly due to the work of the lovely Yvonne Newbold who works tirelessly to ensure that parents and professionals learn from her own extensive experience. (If you are struggling in that position yourself, I do urge you to read some of her resources and join the Facebook page.) I know that our future is uncertain – as Pudding gets bigger and stronger, his behaviour may worsen too, but I know that I’ll be able to turn to places like this for help and advice.

Violent and challenging behaviour is hard to deal with in any situation. But then I also come across parents of (usually) autistic children who feel unable to raise this issue or even mention it for fear of backlash from professionals or others within their community. People who will jump down their throats and accuse them of bad parenting.

All most of us ever want to do is to keep our children safe, understand why they are acting the way they are, and let them know they are loved. And doing that without being judged or criticised doesn’t seem like too much of an ask. I am sometimes very grateful that I only have a small friendly readership and can rant on here in virtual privacy.

Not quite sure what this post has ended up saying really. But I suppose my (rather garbled) message for the day is: Be kind even if you don’t understand what another is going through.

Oh, and be prepared for a kick in the face every so often…

 

Magic

I believe in magic. I really do.

Not the magic from fantasy novels and films that I longed for as a teenager. I still love the escapism that those offer – the ability to vanquish enemies and do good in the world by concentrating your special powers. But I know that doesn’t exist.

I’m talking about a different kind of magic.

There is magic in so many aspects of life: a spring bud unfurling, birdsong soaring me skywards, sunshine on my face, music that has the power to raise goosebumps. The power of words that can tell me I’m wanted and loved. An unexpected gift. We just have to take the time to look for these and appreciate them to the full though I’m not always good at that.

One magic that works every time though is the power of one small boy’s smile.

Whatever mood I’m in, Pudding’s smile will sneak its way past my defences.

OLYMPUS DIGITAL CAMERAWhen I’m frustrated in the morning and am chasing a semi-naked boy round the house to get his trousers on before the school taxi arrives, he’ll look back at me and grin. Suddenly it’s not a chore, it’s a game.

When I’m trying to get the dinner ready while answering a thousand questions from T about Dr Who monsters and simultaneously sending an email, Pudding will worm his way between me and the work surface to look at the food. A hopeful smile and I cave, letting him have a tit-bit before he thunders back to the TV.

Half-asleep when I open his door in the morning, how can I help but respond to his excited grin when he pushes past me to throw himself onto our bed and his Daddy?

Even though I adore the peace and quiet of having the house to myself, the best bit of my day is watching him get out taxi and knowing the smile that lights up his face is just for me.

OLYMPUS DIGITAL CAMERAI love the games of tickle that Hubby plays with him, Pudding’s excited anticipation that breaks into deep chuckles; it makes me smile just thinking about them.

And then there are the times when I watch his face watching the TV. That beautiful slow smile spreading wider and wider until the magic shines out, wonderfully and irresistibly. His joy is bottled in my heart to buffer against the darker days.

There is nothing fake or forced about it – he simply wouldn’t know how.

The magic doesn’t just work on me; countless friends and strangers have been drawn in by it. He may not say hello or goodbye any more, or even acknowledge people as much as he used to. But one smile and it doesn’t matter at all.

Whatever he loses, I hope he never loses that. I know from other boys that their beautiful smile can stay long after much else has gone.

I believe in magic.

 

 

What do others see?

As I watch some children of my acquaintance grow up into teenagers, I see them hit that squirming self-conscious don’t-notice-me phase. I remember it so well. Some adolescents breeze through it and enter adulthood with barely a glance back. Others, like me, never seem to shake it off.

I’ve spent much of my life worrying about what others think of me. (Thanks very much to the bullies at school who shook my self-confidence so thoroughly.) Will people still like me if I say this? What do I look like in that? Etc, etc.

Sensitivity to what other people think got heightened when Pudding’s development delay first started becoming obvious. Any trip out the house became fraught with new worries. What did people see when they looked at him? At me?

A helicopter mother, hovering over her child as he climbed the steps, not giving him the space to do it himself? They could have no idea that his balance wasn’t great and that he had a permanent bump on his forehead from the number of times he had fallen.

Someone who is not concentrating on the conversation going on around her? Even when I let Pudding stray a bit further away from me I’m always watching – aware that at any moment he could hit another child or make a dash for the gate.

A lax parent? If they do see Pudding hitting out or running away they might think I should do more to discipline him. But often when I do tell him off it’s more for the benefit of others. ‘Bad’ behaviour in Pudding is often impulse and no amount of discipline will make a difference.

Too stand-offish? Seeing me standing by myself amongst groups of sociable parents, they could think ‘up herself’. Yet all my thoughts were on the latest clinical results, or concentrating hard on not crying on the school run.

Uncaring? A stranger on the train seeing me scrolling through my phone while Pudding is stuck in his chair watching his tablet and shouting out might expect me to do more to entertain him or keep him quiet. But they would never know that while their journey is briefly disturbed, this is yet another necessary journey to hospital and a film is the only way to keep him calm.

Pudding and me running along track through green spaceIt now happens less and less as I’ve developed a thicker skin on this journey (though I still hate the train situation!). It’s brought out my sarcastic side at times. In the supermarket recently I did say loudly to Pudding, ‘Don’t shout like that or people might stare!’ As we were leaving T very astutely said to me, ‘People were staring anyway, Mummy.’ Not after I said that, they didn’t!

Of course the vast majority of people probably don’t even give us a second thought, let alone think something negative. But my worries about people’s opinions will always be with me at some level, and those who sneer at Pudding or look askance at me will always hurt. But I know that most important are the opinions of those who are close to us. Those who know and love us for who we are. The nurses and play specialist who snuggle with him and insist on me taking a break. Friends who invite us out despite us not having made it out on the previous twenty-three occasions. Family who are always there for us.