Over the Wall

On a Tuesday afternoon a few weeks ago, I stood in Leeds coach station anxiously watching the bus in front of me. I was waiting for one face. And there suddenly he was, in unfamiliar clothes, tall, dark and with striking eyebrows. I soon realised the last two were from badly-wiped-off face paint (much of which seemed to be all over his trousers), but after four days away my 9-year old did look somehow taller and more confident.

I had been told about Over The Wall Sibling camps ages ago, not long after Pudding was diagnosed but at that point T was too young (the camps are for 8-17 year olds). This year I thought he was ready but that didn’t stop me worrying about him going off without knowing a single other person there. I needn’t have been concerned – the first question he asked me as we walked out the coach station was ‘When’s the next one?’

I could write a whole blog post about this myself but what’s the point? I wasn’t there experiencing it, so I’ll turn this one over to T. (I interviewed him on your behalf!)

A tie-dyed T-shirt and some trousers covered in face-paint

So tell me a bit about camp. What’s it like? It’s fun cos you do lots of different activities. Some outdoor things like climbing and abseiling. We also did indoor activities like picking a partner and going round a course blindfolded.

Was it just physical activities? No, we made a film where I was the evil genius with a side-kick. And we made tie-dye T-shirts and origami. And after most meals we had a disco and did camp songs. My favourite was one where you’d sing the start of it and then challenge someone to ‘shake your booty’.

How was camp organised? We were in different teams and we all had a T-shirt. I was in orange team which was the youngest. And a few of us shared a bedroom. There were grown up volunteers who took us to the activities and cheered us on.

Did the staff and volunteers do things to help you make friends and boost your confidence? Yes, there were trust things like the blindfold course and holding ropes when someone else was climbing. And we did one thing where we had to write nice things on some clothes pegs and then sneak around and try and pin them on someone without them noticing. I was very good at that! Another thing was when we had to draw round our hand and then everyone in our team wrote what they thought about you.

Origami, a little wooden chest with a friendship bracelet in, a toy monkey, and a picture of a hand with lots of nice comments written on.What was the thing you enjoyed most? Climbing because you had to climb up a log onto a rope onto another log and then there was a ladder and a big net and some tyres to get up. It was really cool.

What was the hardest thing you did?  Abseiling! I hated it at the top cos you have to go backwards and it feels like you’re about to plummet to your death. But unlike some of the others I actually did it and it made me a feel a bit braver.

Were you all very sensible and well-behaved all the time? Er…no. Well, sort of. One morning we woke up at 4am but we stayed in bed till a better time.

What would you say to someone who was a bit nervous about going to camp? Don’t worry about going away. Just do it. It’s fun. I will guarantee you’ll like it!

Did you miss us at all? No! I didn’t even miss Pudding cos I was just too busy the whole time having fun!

 

I think you get the picture. He loved it, and even though I was going down with that horrible tummy bug when I picked him up, I couldn’t keep a smile off my face as he talked non-stop about all the things he’d done. And yes, he had a VERY long lie-in the next morning!

Over the Wall run camps for children with serious health challenges, their families and siblings. Applications are now open for 2020 (T is on the reserve list now, as they quite rightly prioritise people who haven’t been before). The camps themselves, and transport to them from various big cities, are free to all campers. Therefore any donations would be very welcome!

 

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)

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.

 

 

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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Inclusion

I’ve still got a rather warm, fuzzy feeling going on today. Why? Because of the weekend that Pudding and I have had.

Weekends when Hubby and T went up to visit the in-laws used to feel really LONG. But this time I think we had it sussed. Saturday was a respite morning and we’d cunningly planned good weather in the afternoon so Pudding alternated watching TV with coming out and helping me in the garden (by making me play football). After a miserable few months of rain and cold he is really enjoying the freedom of being able to bob in and out whenever he wants. And what is more I had such fun with him too – his enjoyment allowed us to have that lovely connection and appreciation of the moment.

But Sunday was even better because of the time spent with others. One of Pudding’s classmates from mainstream was having a science party and he was included in the best possible way, that is, on his own terms. The party started at 11am but as we were welcome to turn up for any or all of it (Pudding and chemical ingredients don’t mix all that well!) we arrived just in time for his favourite bit – food! The birthday girl and a friend immediately ran up to show him the slime that they had made, and another girl helped encourage him to finish his lunch and saved him a cake. When we went outside afterwards to set off rockets, Pudding loved joining the others to chase the lemonade bottles that had been launched into the air. Then he proudly showed the one he was carrying to all the adults inside.

Often encounters outside the house can be fraught with my worries of Pudding’s behaviour being judged and that makes it difficult to let go and relax. But yesterday so many of the children and adults engaged with him, treating him as just a normal part of their lives that I can safely say I’ve never enjoyed a children’s party more.

There was a slight low point in the day when Pudding escaped out the gate that I hadn’t closed properly and ran off down the road. But hey, even that has a silver lining – he actually stayed on the pavement and didn’t run straight into the road – so we’ll skim over that episode, eh?!

Pudding and me running along track through green spaceEarlier in the morning we didn’t have any particular plans but at the last minute I decided we’d go to the Parkrun. For those of you who haven’t heard of this (where have you been?) these are free weekly runs organised by volunteers. The adult one is 5km but locally we also have a junior version the next day which is only 2km. The fantastic thing about parkrun is that it truly is open to everyone, regardless of ability. Everyone is welcomed, supported and included. We’ve been a few times before and Pudding has never made it anywhere near the whole distance – true to form his instinct is to veer off in the opposite direction to everyone else and we use various tricks and encouragements to keep him on the right track. But that simply doesn’t matter at all; the volunteers celebrate each little inchstone with us, offering high-fives and cheers. This time we got further than ever before, probably still less than 1km, but it felt almost as much of an achievement as those running the London Marathon on the same day. (Almost!)

Pudding thrives on the company of others. He runs in his own peculiar gait with a massive grin on his face. And it puts a big grin on my face too. This really is inclusion at its best.