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!)

Interview with an MPS sibling

Most people will know that #MyMPSHero is a chubby little boy with a big smile and an impressive head of curls. But of course there are many heroes in my MPS world and today I’m handing over to one of them. MPS siblings put up with a lot and my biggest boy, T, is no exception to that. We’ve always tried to be open and honest with him about Pudding’s condition but sometimes I do wonder what he makes of it all. T agreed to be interviewed by me for this blog post and I’ll leave his words to speak for him:

Boy wearing #MPSday t-shirt with a blue paper bow-tie and moustacheHow would you explain Mucopolysaccharidosis to someone who has never heard of it?

It’s a disease that not many people get so it’s very rare. It makes lots of the parts of your body not work very well.

How does it affect your brother?

It’s stopped him from talking and he doesn’t really understand very much of what we’re saying. He never actually goes by rules of games because he doesn’t understand. I don’t like thinking about the bad bits because it’s too upsetting.

What’s the best thing about living with Pudding?

Cos of MPS that’s made him look really cute, so that’s nice. He also gives really good cuddles and kisses.

And what’s the worst thing?

That’s easy to say – he always hits us and throws books at us. Other things as well as books.

What is he good at?

He’s good at throwing things! And as I already said he’s good at doing cuddles and kisses. He’s also really good at football.

What do you think he’ll be like in the future?

I don’t really know. I’ve got an idea that some time there might be an antidote to MPS. But I don’t want it to stop him being cute though.

Do you have any advice to give other children who have a brother or sister like Pudding?

You’d better get good at dodging things. But try not to get angry when they do throw things because then that encourages them to do it again.

I know you didn’t like it when he moved away from the school you go to. Why was that?

I liked him being at school because he would roam around a lot, and sometimes he would come and invade our classroom and give me a cuddle. But I’ve got used to him not being there now.

Can you imagine what it would be like to have a brother more like you?

Yup.

Do you think you’d prefer that?

Not really, because I like Pudding. He’s cute.

So do you think he’s the best brother you could possibly have? (incredibly leading question from the interviewer!)

Yes!!

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!

Escaping the dark tunnel

The last few weeks I’ve felt a bit like I’ve walked out into a wide green meadow after a long dark tunnel. Whilst I was in the tunnel it didn’t seem too bad – I was coping with it – but it’s only once I’ve left it that I realised what I was missing.

As a SEND parent or carer it’s easy to neglect one’s own mental health. You spend so much time focusing on all the things that have to be done right now, and the worrying about the future, that you never realise that somewhere along the way you have lost yourself.

Pudding wearing a felt toy shopping basket on his head.Lately I’ve been trying to work out what’s changed to make me feel different. After all, Pudding is the same gorgeous trouble he always is. His diagnosis hasn’t changed. The future is still uncertain. It’s just my own attitude that has changed. Some of it has been down to things that I’ve been able to control, and some of it has been external factors.

I know I won’t always maintain this improvement so here’s my own personal ‘How To’ guide on how to escape that tunnel!

Sunshine: Obviously I’m not ominpotent and so this is a commodity that’s been in short supply lately! But there’s no denying that the weather makes a big difference to my mood. So when the sunshine appears make the most of it, even if it’s only to step outside the door for a moment, turn your face up to those magical rays, close your eyes and breathe.

Music: Music can have such power to move us, to trigger tears or uplift us. My new car has a working radio and CD player and I hadn’t realised how much I had missed this. Now I am rediscovering the joy of staying sat in the car once I reach my destination just because Ravel’s Bolero is too damn brilliant to turn off. (Obviously this only happens when I’m alone because otherwise…well…kids!). Whatever floats your boat – classical, show tunes, R ‘n’ B – indulge yourself.

Friends: A good laugh and chat with friends just can’t be beat.

Good food: Let’s face it, kid-friendly food is boring. A beetroot and mackerel salad, dark salted caramel chocolate, a special meal out – they can delight the senses and make me think life is worth living rather than just enduring.

Clearing out: Ticking things off the To Do list, clearing out a cupboard or divesting yourself of a responsibility that is stressing you out really can feel like a weight is lifted. Lately I’ve finally been getting round to doing some much-needed decluttering in order to eventually sell the house. The more I get done the better I feel.

Of course, the problem is that none of this really works when I’m in the depths of the tunnel. Music makes me cry, the thought of getting anything done sends me into a spiral of anxiety and I am so good at convincing myself that no-one could possibly want to spend time with me.

OLYMPUS DIGITAL CAMERASo how to get past it? One thing at the MPS conference this weekend really helped to clarify my thinking about how things have been in the last few months. My favourite psychologist showed this diagram (and sorry, I don’t know who should be credited!). Essentially it shows that what you think about something affects how you feel which in turn informs behaviour, and so on. Round and round. Negative thoughts lead to negative feelings and behaviour that doesn’t help the situation. This was a bit of a lightbulb moment for me as it is so true: now something has happened to interrupt that cycle.

When Pudding starts throwing, instead of getting frustrated I have re-framed it in my mind, recognise it as communicating his need for attention, and can deal with it calmly. When we’re out and someone gives us ‘that look’, I can choose to think of it as the reaction of ignorance and prejudice rather than a comment on my parenting, not let it hurt me and continue enjoying our day. Of course, I ain’t going to be perfect at this all the time, but who is?!

But (and it is a big but) when you are stuck in that long dark tunnel none of this common sense advice actually makes a difference. If it’s so dark that you can’t even see your hands in front of you, it is unbelievably hard to step forwards.

In which case it is ok to ask for help. Whether that is medication, counselling, respite or even just a shoulder to cry on, anything that can help break that cycle of negativity will simply make you a better parent.

Life is hard enough, parenting is hard enough, let alone adding in all the extra complications of a SEND life. Asking for help is not an admission of failure.

So next time I hit a dip I will try to come back and read this. Perhaps it will help.