School’s out

So here we are – last day of the summer term, and Pudding has done a whole year in mainstream.

This time last year I was anxiously waiting for September and wondering how things would go. There have been a lot of emotional ups and downs since then, but right now I’m facing the future with calm.

In reading other blogs from the disability world, I’m well aware that schooling, as with many other services, is a lottery. I feel very lucky that we somehow managed to get hold of a winning ticket. So many parents face discouraging messages: ‘we don’t feel we can meet his needs’ or ‘perhaps your daughter would do better somewhere they have more experience’. Yet at our local school I have only ever heard ‘How can we make this work?’

Pudding smiling widely in his red school shirt.

For inclusion to succeed there has to be the will, throughout the school, to enter into it wholeheartedly and there are many reasons why this year has worked for Pudding. A headteacher who believes in inclusion enough to have a member of staff dedicated to SENCo (Special Educational Needs Coordinator) work three full days a week. A SENCo who holds regular coffee mornings for parents to discuss areas of concern. Teachers who welcome difference into the classroom and explain it to other children. And most of all, a teaching assistant who throws herself into learning Makaton, developing resources, teaching and caring for Pudding as if he were her own.

And I have to mention the other children – one of the benefits of mainstream which I never expected is the way Pudding has been taken to heart by the whole school community. To watch the Year 6 children scramble to give him high fives has been such a joy to me.

There have of course been some negatives. There was the nativity which didn’t go quite as I’d have liked.  On days when Pudding was in a bad mood I would dread hearing that he’d badly injured another child when throwing something. Perhaps the most difficult thing, again unexpected, has been emails from the class teacher explaining what phonics or maths the children were learning that week. I’m afraid I just stopped reading these regular reminders of how far Pudding is behind on ‘typical’ development.

Much as I have loved the positive experience we have had in reception year, I did start to worry what Year 1 would be like. Whilst his peers move towards more desk-based work, Pudding still struggles to sit and concentrate at anything for long. In an open-plan environment I had visions of him becoming more and more disruptive. We took the difficult decision to apply for a split placement – requesting that he stay in mainstream for 2 days a week but then have the other days in a special school.

I say a difficult decision: logically I felt it was the right thing to do, but emotionally it was another big step on the path of acceptance. I wanted to give him the best of both worlds – keeping him rooted in the local community, but also having the chance of more specialist teaching with other children on his own development level.

Our request was turned down, due to lack of space in the special school.

I won’t deny that this decision really upset me.

But once again, Pudding’s current school stepped up to the mark. Almost immediately I got an email from the SENCo asking how I was, and reassuring me that they would put in place whatever was needed to make things work. And they have already. The children all move up to their new class three weeks before the end of term, so Pudding has now been in Year 1 for three weeks. In consultation with the special school they have set a personalised timetable for him and found a room where he can go to do focused 1:1 work. He has regular access to play resources and plenty of interaction with his classmates. And so far the results have been really positive.

None of us know what the future holds. Even with the intervention of his trial meds, the gap between his abilities and that of his peers will continue to widen. We may need to apply for a full-time place in special school for the next year. But for now, I know he’s in a great place.

And he’s happy. At the end of the day, that’s really all that matters.

Not to you

Many times I have laid in bed listening to your nightly party time, and cursing you for my lack of sleep. Last night though I loved hearing your surprised little ‘oh’s and cackles of laughter, the shouts of ‘wha da?’ from your dark room. You see, just before I’d been watching TV and seen a hearse with a child’s coffin in it and a name spelt out in flowers. Your name.

I should have expected it, the storyline was obvious. But I didn’t expect that visceral punch to the emotions and it left me sobbing on your Daddy’s chest. When I went up to bed and closed my eyes I kept seeing it still. But your laughter wound its way around my heart and soothed my fears. Every shout and giggle sang out that this is a boy who is joyfully and wonderfully alive.

Pudding peering around a tree with a huge cheeky grin.Since Christmas I don’t think I’ve been the best mother for you. I’ve spent too long stuck in a darker place than I’d like to be. I’ve been too easily frustrated by you and your brother, and have been finding it difficult to accept life as it is now as opposed to the life I expected. Things have been turned around lately though; Martin House and the MPS Conference gave us a bit of respite, and counselling has been helping me to look at things a little differently.

I lay there and thought of that coffin and your name in flowers, and instead of falling back into the dark place I vowed that it.. Will. Not. Happen. Not to you. Not as long as I can help it.

It’s not fair that a simple mistake in your DNA has dealt you this hand. It’s not fair that it is so costly to develop drugs for conditions as rare as yours. It’s not fair that decisions have to be made on which patients are ‘worth’ saving. It’s not fair that there are parents out there having hope ripped away from them as another trial drug is withdrawn.

It is all too easy to be swamped by all these obstacles in your way. I’m not a natural campaigner – I’m too shy and introverted for that. But, my gorgeous trouble, I promise I will do what I can for you. I will fight for you.

You are most definitely worth it.

Hospitals (and play)

I have a little luxury that I indulge in when we’re in Manchester if it’s a long day or we’re there two days running. Our visit last week was a long long day. There was a problem in Pharmacy making up the drug so Pudding wasn’t given his dose until three hours later than usual.

(Because the drug is injected into the spinal cord it means that there would be severe consequences if any infection was introduced with it. The drug is made up in the aseptic lab – think protective clothing, disinfection, working in sterile environment – and if anything goes even slightly wrong they have to start again.)

If I’m stuck anywhere for any length of time I start to go stir crazy and hospitals seem to exacerbate that. There is always a lot of waiting around – waiting for the next set of observations, waiting for the dose, waiting to see if he reacts badly – and we’re powerless to really do anything much. So what I do is take a walk to the M&S Food Shop for a nice sandwich and maybe even a pudding. It is a definite improvement on the canteen food, but that’s not the luxury. No, it’s the short walk there, and more importantly leaving the building. I go the long way round and cut across the grass. Even though there are no signs saying you shouldn’t I still feel guilty but it’s worth it. The chance to walk outside and gaze at lush green nature, even if it is only a tiny patch, is priceless and is my healing.

Not that Manchester Children’s Hospital is a bad place. I’ve not got much to compare it to having never stayed in one myself, but if you have to spend a lot of time in any hospital I recommend it. It’s pretty bloody brilliant. It was purpose-built in 2009 and obviously has the needs of children very much at its heart. There are toys and cartoon characters everywhere, clown doctors doing their rounds, visitingSmiling lady with a birthday hat on playing with a transformer celebrities and amazing staff…

The most important people though, at least as far as the kids are concerned, are the play specialists. Nope, I hadn’t heard of them either until recently. These wonderful people have a background in childcare but now work in the hospital to offer all sorts of opportunities for play – distracting children from the procedures they are facing and supporting families. And oh my word, they are worth their weight in gold!

The first thing most kids ask when they get onto the research ward is ‘Where’s Emma?’. Non-verbal children like my Pudding rush to give her a hug. She makes each and every one of them feel special and loved. Of course, the nurses do a brilliant job too, but they have to focus on the clinical side and have loads of admin to do as well, so Emma gets to be the fun one. She provides DVDs, spare batteries and wifi, arranges the chill-out room for the teenagers and messy activities for the young ones. She has an enormous smile that never disappears. (And she’s even been known to clean up vomit when the need arises.) Pudding has one T-shirt that says ‘Mad as a box of frogs’ and we have always joked that she should have one too. Madcap indeed, but exactly what we need to keep us all sane in stressful circumstances.

I hate MPS

Have I ever said? I loathe MPS with a passion. I loathe it with every millimetre of my body, every breath, every beat of my heart. I loathe it and yet am powerless to do anything about it. If it was a person I could tell them how much I hate them (though I probably wouldn’t). As it is, I just have to put up with anything it throws at us.

I have to watch from a distance as people I have become friends with struggle through similar problems. Others face much worse as their children lose skills, get more difficult to manage and then, heartbreakingly, become more compliant as they decline further. I hate it. I hate it. I hate it.

I know this happens to me every so often; just as I think things are going along just fine something hits me again. After Pudding’s third dose of trial meds this week, he woke up from his nap and started crying. He couldn’t be comforted with tv or food, both of which are normally sure-fire winners, so of course we started thinking it could be a reaction to the enzyme. 

He fought like mad as we tried to get some paracetamol and antihistamine in him. He turned to me and cried, ‘Mummy!’ as if I could do something to stop this happening. And I should be able to, shouldn’t I? I’m his mother and that’s what we’re there for, to protect them from harm and stop the nasty things happening. But I can’t, and in that moment I felt so helpless and overwhelmed.

Soon after that he vomited and he was sick another few times during the night – not much fun when you’re alone in a hotel room with a screaming child. Given the reactions he has had previously after his weekly infusions it wasn’t really a great surprise. So next time we’ll rethink the pre-meds he gets to try and avoid it happening again.

mum picIt wasn’t really a big issue – reactions like this do happen, they can be managed and trying to second guess whether they will worsen is pointless. But I think it highlighted something for me. I am no longer in the emotional turmoil following diagnosis, but the anxiety still never completely disappears, even if it is hidden under a veneer of ‘normal’. So when something does come up I probably react more than the situation warrants. That can be MPS-related or another matter entirely, hence shouting at Twiglet if he’s pushed the wrong button for me.   

I guess the only thing I can do is try to recognise this, and accept that it will keep on happening. I am not a superhero, and I am allowed to cry.

(Looking on the bright side, I managed to avoid getting any vomit on my nice fluffy cardigan. Maybe I do have some superpowers after all!)