Exciting times! Yesterday was Pudding’s second full day at school. Last week he did two mornings and this week we’ve been alternating so we can ease him (and them!) in gently.

Despite some encouraging transition sessions and oodles of support from school I have been nervous about him starting. Will he run riot? Will the other kids accept him? And so on, and so on. But the experience so far has been almost entirely positive.

Of course I’m not saying he’s behaved like an angel. That would be too much to ask. But he has run in each morning clutching his school bag and with a big grin on his face to greet his TA – superb. He has sat down to eat his lunch most days – amazing! And I get the usual excited ‘Mumm-mee!’ and knock-me-over cuddle when I go to pick him up.

It’s amusing having his big brother and cousins at the same school. So I get the official version of Pudding’s day at hand-over: that he did well on a jigsaw, that he sat down nicely at circle time or has been very enthusiastic with his painting.

Then my informants rush out afterwards and tell me the more usual Pudding stuff:

‘He ran away at dinnertime and Mrs F had to chase him down.’

‘He was hitting his lunchtime lady with a plastic bottle.’

‘He was lying down in the corridor and wouldn’t get up until I said hello to him.’

What do the other kids make of him? As in playgroup, many have simply accepted him for what he is and don’t seem to bother that he can’t talk to them. Others are interested and want to learn more – one little girl was very proud to be able to show her mum the Makaton they did in class. Another boy told me somewhat grumpily that Pudding always messes up his cars, but it was in a tone of complaint that he would use with any other child. I’m sure we’ll come across the whole spectrum, and that’s ok.

He’s certainly making his mark on the whole school community (which is a big one). Many other parents have asked how he is doing. And I’ve been amazed this week by the number of children who’ve said hello to him during school run; not just friends of Twiglet, Niece or Nephew – it’s been those in other years too.

There are so many stories of cruelty and intolerance out there, and of course those people will always exist. Niece was riled earlier this week by a (notoriously mean) boy laughing at Pudding for still being in nappies. But the acceptance and goodwill that we have seen since Pudding started at school, has been filling up the positive side of the scales to overflowing.

And how am I managing to spend my days? Well yesterday, I went into town to meet a writing friend and spent two hours working on the much-neglected novel. Followed it up with lunch, and some early Christmas shopping then walked back to the bus stop in beautiful sunshine with a grin as wide as my face….

As predicted, this summer holiday has been so much better than last. We’ve had some lovely days out/time away and respite has allowed Twiglet and I to spend time doing some more adventurous outings. And of course it has helped that we weren’t being crushed under the weight of a new diagnosis.

The holiday ended with a week in a converted barn down in Warwickshire. There was a play area with Wendy house, footballs and ride-on toys. Boxes of toys to borrow and play with. Fields to either side with horses and cows. And so many great places to visit nearby with children, including Mary Arden’s Farm and Hatton Country World. I think Pudding was in seventh heaven with all these animals to meet!

Then I came down with a rotten cough and spent the last three days coughing for Britain and wishing I was at home. I’m still coughing a week later and found out that the camera malfunctioned so we don’t have any pictures from the first few days. Not the best end to a great few weeks.

So, today is a perfect day to receive this in the post. (Not the best photo – see earlier comment about stupid camera!) I first spoke to Melissa at Holmes-made about commissioning this piece before Christmas but didn’t get around to sorting out the details until months later. I wanted a bespoke papercut of my boys. Something to remind me that no matter what happens in the future, they will always be perfect and beautiful in my heart. MPS can steal so much from families, but it cannot steal that.

And what do I think of the first piece of artwork I have ever commissioned? Well, you can probably guess the answer to that one…

I have many reasons to feel grateful despite MPS: the uncomplicated smile of delight on Pudding’s face when he sees someone he likes; his deep chuckle when something catches his fancy on TV; the love given to him by his older brother despite being hit frequently; occasional sunny days; trips out.

One thing I haven’t mentioned lately though is the many people who have shown us love and support over the last year. Family and friends have been wonderful. Even though I rarely ask for help (apart from Sister – I ask her ALL the time) I do appreciate that people have offered and looked after Twiglet when we’re off at appointments.

Then there’s all the fabulous fundraising that has been done for the MPS Society. A friend did a 10k recently. Hubby’s brother-in-law and niece are in the Great North Run soon. A team from Hubby’s work have entered a soap-box challenge. Even Niece has started making pom-pom animals and wants to sell them to raise money.

Whether it’s small amounts or large, I appreciate them all. This is money that can be used to keep someone on the end of the phone line to support newly diagnosed families and help them through the minefields of form-filling, money that can be put towards finding new treatments and possibly cures for MPS.

So thank you. From the bottom of my heart, I thank you all.

When Pudding was first diagnosed with MPS I thought I’d never be able to smile again. If you are told that your child has a life-limiting illness it is like your whole world has just ended and nothing will ever be the same.

Other parents told me that the first year was the worst, and I wanted to believe them but couldn’t quite. How could I ever come to accept this.. this awful reality? The weekly ERT infusions, the operations, the news about damage to airways and heart, the continuous punches in the gut which come with each new revelation.

But the other parents were right. Things do get easier and the new normal becomes …. well… normal. I’m often told that my blog posts make people cry, even now, and I’m always a bit surprised. I don’t intend it to be that way. I rarely cry myself these days. Never say never, of course – this is not a reality I ever expect to embrace wholeheartedly.

ERT has become a weekly routine. Even the monthly trips to Manchester are getting better. And it helps of course that we have hope for the future. So now I’ve reached the stage when I sometimes get days when everything comes together and life seems almost perfect. This week I had one of those.

In the morning we (me, Pudding, Twiglet, Niece and Nephew) set off for a visit to Nuzzlets organised by our local special needs group. I’d been told about it a while back by portage and knew that Pudding would love it. The chance to meet and feed lots of different animals would be ideal for my little snuggle-monster.

Almost as soon as we arrived the kids were cuddling and stroking kittens. The smile on Pudding’s face couldn’t have been wider. There was bird seed to put out, apples to collect in a wheelbarrow, hunting for bugs under a log, a field of sheep to walk through. Each activity was done just for a short time and most of the areas were separately fenced off so I knew that the escape artist would not be able to run off.

Pudding couldn’t stop giggling as the goats nibbled food off his hand. And apparently guinea pigs and giant bunnies don’t mind being force-fed a carrot. Even Twiglet deigned to have a rabbit on his lap. Completing a successful trip we managed to keep Pudding awake in the car on the way home. Meaning…

…That in the afternoon we continued our project on the Normans while he had his nap. I used to do projects all the time with the other kids – letters of the alphabet, finding out about different jobs, and so on. But as Pudding got bigger and more of a handful it tailed off. Since diagnosis I’ve hardly done anything like that with them. So it felt strangely elating to be designing our own shields, drawing a Bayeux Tapestry on brown paper packaging from one of the medical deliveries, and recreating the Battle of Hastings using Happyland people.

The day was finished off with listening to gorgeous music from Classic FM on my way to my writers’ group in the evening, and receiving a lovely present from a friend.

See? You don’t need to cry for me – on days like this life couldn’t be better.

Anyone who knows Pudding, knows that he is obsessed by ball.

It was one of his earliest words and as soon as he could walk he would stagger up to anyone in the park and demand to play with their ball. Once his balance improved enough to stay upright without falling over every two seconds, he quickly outstripped Twiglet with his football skills.

He still frequently impresses strangers with his kicks which are both hard and accurate. As for me, I’ve always enjoyed looking on with pride and knowing that there is at least one thing that he’s better at than his peers. (Yes, I know, I know, I’m meant to accept and celebrate him whether he’s good or not. And I do, but allow me just a little bit of Mummy boasting?)

When he was little we used to joke that he would be a professional football player. A while later once we realised that he had some problems we changed to saying that he still would just as long as he could learn the rules.

Now? Well ok, I always knew that it wouldn’t happen, but it’s hard facing realities. When he was at the school sessions last month he gravitated to the football area. I watched smiling, knowing that this would be the place he could shine. And I saw the other children quickly changing direction with the ball, tackling and aiming for the goal. Yes, Pudding can still do impressive kicks, but he simply doesn’t have the agility or understanding to play a game well with others. His balance has improved a lot over the last year but he still falls frequently if he tries to run in anything other than a straight line. He knows that someone stands in goal but not what to do there: when it is his turn and a ball comes towards him he often just flinches. This is just one more thing that MPS has been taking from him.

Maybe he’ll catch up again and can learn to truly interact. In the meantime, we still love playing endless hours of ball in the garden. Or the park. Or anywhere someone leaves their ball unattended.

And hey, with his size and build, and his tendency to pick up the ball and run with it, maybe rugby is the more natural choice after all…?

 

 

Yay for the summer holidays! A time to relax and kick back, head off to the beach or the hills or the theme park. Or wherever. For most parents the day’s outing will be dictated by two simple questions – what will everyone enjoy? and can we afford it?

Some families though, aren’t so lucky. Their choices are dictated by the facilities that are available.

Hence the reason why I’m including a picture of my bare feet on our toilet floor (and remember I am the only female in this household, so let’s just say it is of dubious cleanliness).

Soon after I started blogging I read quite a bit about a controversy that was raging between those bloggers with disabilities and parent bloggers. It was all fairly heated and I tried to learn from it rather than my natural reaction which was to bridle at someone telling me what I should be doing. One of the key things I took from this argument was the importance of keeping in mind my child’s dignity. This means not covering things that I wouldn’t want others to know if it was myself that was being written about.

I’m now going to break that rule. Because this is an important issue affecting many thousands of people, yet is almost universally ignored.

Like many with development delay, Pudding still wears nappies and probably will do for quite some time. When we are out and about I usually try to find a secluded corner outside to change him. But this isn’t always possible – in our climate we can’t guarantee a dry patch of ground. And let’s face it, he isn’t a baby any more and he deserves better than other people’s judgemental looks.

Before I’ve always blithely thought that the disabled or accessible toilets would be adequate for anyone not able to use the standard toilet. But all over the country – perhaps the world – there are people lying on toilet floors to be changed because they have no other choice.  The Changing Places campaign asks for a few standards – a hoist, an adult-sized bench and adequate space. This doesn’t seem too much to ask, does it? Yet so often, even when new leisure facilities are being build, those with additional needs are being left out.

Places like this do exist, but they are few and far between. The library in our city centre has one, and there are others nearby, but outside the centre it is 14 miles to the next.

861 suitable Changing Places in the whole country.

So next time you’re out on a family outing, have a look around. Would anyone, regardless of their disabilities, be able to visit too? Would we? If that bothers you even the slightest bit, please consider signing this petition or taking the Barefoot Challenge yourself.

There are other fantastic people campaigning on this issue too, so if you don’t want to just take my word about this, do visit Ordinary Hopes or Mum on a Mission to name just a couple. Thank you!

PS. I did consider calling this blog post ‘Poo!’ as it is one of Puddings clearest words. He signs it beautifully too!