Old Age

I often feel old these days.

Let’s face it, I’ve always been a bit of an old fuddy-duddy, but lately it seems to be catching up with me physically. I’m not as flexible as I used to be. Hubby laughs at me when I get up off the sofa and have to hobble for a few paces before I can straighten up fully.

Pudding looking back at the camera whilst he heads out of a ruined castle archwayI can still race after Pudding when I need to. Other parents will attest to that after seeing me go from 0-60 in two seconds when he’s about to head out the playground gate. But some days it’s an effort.

I turned 40 while I was pregnant with Pudding, and do wonder if I’d find it easier in a younger body. Lack of sleep really does me in – even nights when I’m only vaguely aware of him chatting can leave me exhausted the next day. And bruises I get from him last for weeks.

You might think that with age comes more experience, conferring an advantage in the particular battles involved in raising a child with special needs. But I’m privileged to know a number of younger MPS mums who are doing a bloody marvellous job at just that (waves hello – you know who you are!).

Of course I’ve often wondered if my age is actually the reason for Pudding having MPS. Hunter Syndrome is the only x-linked version of MPS. This means it is passed down on the ‘x’ chromosone from the mother only. I don’t have the gene deletion on my own DNA so Pudding’s case is from a spontaneous mutuation.

Of course I was aware as my single, non-childbearing years continued to pass that my fertility was declining. The ‘cliff-edge’ diagrams and comments about ‘selfish women wanting to delay children due to their careers’ are thrown at you by the media. The link between older mothers and increased likelihood of having a child with Downs Syndrome is well documented and I was prepared for that outcome when I was pregnant. But I’ve never actually dared to ask the question about a similar link in MPS – whether a spontaneous mutation is more likely as the mother’s age increases. I don’t think I really want to know the answer. It’s done now. I can’t change what’s happened. I always expected to have children much earlier but never met the right man until Hubby.

My worry now is for the future. As we age, what will happen to Pudding? Who will care for him and see that he is well looked after? With new treatments becoming available maybe he will beat the odds and kick MPS in the butt. But if he makes it to 30 years old, I’ll be 70. Current attitudes to disability and long-term care available in this country don’t exactly fill me with optimism.

Sometimes the thought of losing him earlier is less scary.

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.

What’s on your mind?

For a while now there’s been one question that I’ve wanted to know the answer to more than anything. More even than the ‘What does the future hold?’ question, which I have sort of accepted that I will never know. The question is ‘What goes on in Pudding’s head?’

I live with him and love him. I know loads about him. I know that he loves watching Octonauts or Sarah and Duck. That he has a mean left kick in football. I know (mostly) what foods he will or won’t eat. I know (usually) when he’s about to hit me or throw something.

But I never really know what he is thinking. Because he can’t tell me.

When chuckles suddenly erupt from his round belly for no reason that I can fathom, what has started them? Has he seen something that tickles his sense of humour, or is he remembering something funny? Or, is it another new symptom to worry about? (Gelastic seizures, which cause a sudden bout of laughing or crying, are another thing I’d never heard about before Pudding’s diagnosis with MPS. Unlikely at this stage, but that doesn’t stop me running the possibilities through my head.)

When he is chatting in his bed alone at night in the pitch black, who is he talking to and what is he saying? I’d love to be able to join in sometimes as it sounds like a lot of fun.

When he asks for ‘Beebies’ for the twentieth time in a row with that beautiful hopeful smile, does he expect the answer to be different to the previous 19 times?

He does sometimes show problem-solving skills such as coming to find me when he needed a milk spillage cleared up, or getting a stool when he wants to reach something. So I know that he can identify a problem and find a solution.

I’ve often wondered how much he recognises people that we don’t meet very often and remembers things we’ve done with them. He’s so happy to see anyone and gives smiles and cuddles out freely regardless of whether he knows them! But I had an insight when we met his cousin’s cousins recently after a gap of only three weeks. The first time we saw them was in a restaurant and we whiled away the wait for food by playing one of his favourite games. It’s very simple – we point at each other and say ‘You!’ then someone replies ‘Me? No, you!’ (Really, don’t ask. Don’t all families do weird stuff like this?) Well, the second time we met up, as soon as the little girl peeped around the corner, Pudding pointed at her and shouted ‘You!’ Not his usual greeting, so I’m sure he remembered the time before.

Unless his language makes a huge leap forward, I probably never will have much idea of what he’s thinking about aside from the basics. I wonder what he would have been capable of, had his brain not been gradually clogged up with waste sugars for the first four years of his life. One thing I can be sure of though – there’s more that goes on in that curly head than I will ever really be aware of.

Clearing out

Ah, the post-Christmas clear out!

Finding space for all those new toys often means a ruthless look at the old ones and the filling up of various charity bags. Added to that, moving Pudding into his own room has given the perfect opportunity for some reorganisation and de-cluttering.

Reaching under T’s bed to pull out what was stored under there I nearly choked on a few year’s worth of dust. (Think I might have mentioned my lacksadaisical approach to cleaning before?) I hauled out the musical instruments to put on Pudding’s shelves. The kitchen play sets would still get plenty of use. Building blocks and dressing up fitted nicely under Pudding’s bed.

IMG_7296And then I stopped, confronted by two boxes of jigsaws and  first readers’ books. T grew out of them a while back, so a few years ago I packed them ready to pull out when they were needed again. There they have stayed. I’ve come across them lurking there since and pushed them back again knowing that their time was still not here.

I wonder now whether their time WILL ever come. Will he ever be able to do a 50 piece jigsaw or learn to read? I don’t know.

The brain is a wonderful thing. People with significant brain injuries can learn to walk again, or talk, or any number of amazing achievements. Yet there are individuals who are fully functioning in all other respects but never learn to recognise faces. I found the neuroscience module I did during my degree absolutely fascinating, but if there’s one thing I learnt it’s that there is so much we don’t understand. Perhaps this treatment will clear his brain of waste products. Perhaps he will learn and progress more. But perhaps he won’t. It may be that he will always remain a two or three year old cognitively. I can look at others with the same condition who are also on the trial but I just don’t know.

I’ve lent some books and jigsaws to friends who can make better use of them and I’d love to get rid of the lot. But I won’t. Because that would be giving in and limiting our expectations of Pudding. He’s surprised me with so many things already, so I have to hope that he will again. And if he doesn’t? Well, I never really liked Biff, Chip and Kipper anyway…

Time sponges

I always expected that when my children were old enough to go to school, I would start work again. I used to be a therapist, but stopped when Twiglet was six months old. I became a stay-at-home mum and also did childminding for Niece and Nephew. I suppose this has left me with some self-image issues but maybe that’s a whole other post!

Whatever this has meant to me, it’s probably been very useful to us as a family since Pudding’s diagnosis. I can’t think there are many employers who would be understanding about the huge number of absences I would have taken over the last year or so. Even now, I would need to find a Monday-Thursday job where they don’t mind me going to Manchester every four weeks. Oh, and only during school hours in termtime. That’s unless I put the kids into more out of school provision, and I really don’t feel that would be the right decision for Pudding at the moment.

So for now, I’m continuing to do some volunteering on a Monday and stay at home with Pudding on a Friday for his enzyme replacement therapy (ERT). I blithely thought that would leave me three whole school days to finish my novel and get loads of other stuff done.

There are many SEND parents (those who have children with special educational needs and disabilities) out there who have no choice but to work outside the home, and hats off to them.  I’m going to risk saying something I warned against in a previous post – I don’t know how they do it!

I don’t mean this in a ‘Oh my, they’re such amazing human beings’ kind of way. That goes without saying. All mums are – working or non-working, SEND or not. I mean it in a ‘how do they cope with all the time sponges?’ kind of way.

img_6720You know what I mean by time sponges? Those little things that should be simple but seem to take up a ridiculous amount of time. The sort of things like going to put some air in your tyres and then realising that actually there’s a great big nail in one which means you spend the next hour and a half getting it fixed.

We all deal with little frustrations like this (though I admit to a certain amount of huffing last week when the tyre fiasco happened). But when your child is a little bit…different, it seems like the time sponges just multiply.

Time sponges like a simple form that needs to be filled in that has two lines for ‘any health concerns’.

Like all the email arrangements that need to be made for our monthly trips to Manchester – travel, accommodation, who’s picking Twiglet up from school.

Like waiting on hold for an hour to request a lost Disability Living Allowance form.

Like trying to sort out electronic delivery of Pudding’s prescriptions to the pharmacy. An ‘easy service to sign up to’ that required three trips to the GP’s reception when no-one knew how to deal with his complicated medicines on the system.

Sometimes school run rolls around and I can’t believe how little I’ve managed to achieve. The thought of trying to do all this stuff on an evening when the kids are in bed or during a snatched lunch break just defeats me. I reckon the only feasible solution would be to wait for the time machine that Twiglet has promised to invent for me. Until then I’ll just have to get better at multi-tasking. I should probably be doing the cleaning while waiting on hold with someone right now.

PS. I admit it, I don’t always use my time as efficiently as I could. But sometimes a morning of hot chocolate and chat is a sanity saver…


A world without…?

Last week I got round to watching a programme I’d recorded – ‘A World Without Down’s Syndrome?’ In it Sally Phillips, who herself has a child with Down’s Syndrome, raises concerns that a new highly accurate screening test will lead to an increase in the rate of abortions of those identified with Down’s (which is already at 90%).

It was an interesting programme and one which raises lots of questions about choice and the knowledge that can inform that choice. For myself, as an older mother I was well aware of the ‘risk’ in my own pregnancies. Having had contact with the Down’s community previously I think I was less scared about this prospect than some other mums would be and refused the testing that was already available. Partly because I knew the limitations of the test itself and also because I would not have aborted anyway.

Watching the programme though, I couldn’t help but think of our situation now. I was prepared to deal with a Down’s diagnosis at birth, but to be hit with the bombshell of MPS when he was three years old was never on my radar. So if I’d been told when pregnant that my child would have this progressive and life-limiting condition what would I have done?

I don’t think I could have faced the prospect of heartbreak and devastation, the weekly treatments, the uncertainty of this diagnosis. How could I put myself and our family through that, let alone the child itself who would have to become more familiar with operations and needles and blood pressure cuffs than I would ever want to?

But of course we never had that choice to make, and I am very glad I didn’t have to. If I had, and found out now that gene therapy could be available in Pudding’s lifetime, I don’t know how I would feel.

Even taking away that prospect, I couldn’t contemplate life without him, knowing now how much I love this bundle of trouble. Last year I wrote that I would change his Hunter’ Syndrome in an instant. That’s still true on a medical level – if I could save him from the needles and us from the worry, I certainly would.

But now I do have more understanding of the other SEN parents who say they wouldn’t change theirIMG_8306 child for the world. Without Hunter’s, he wouldn’t be the boy who makes his TA’s face shine with pride when she shows me his latest ‘drawing’. He wouldn’t be the boy who in a few short weeks has made himself known and loved throughout the school. He wouldn’t be the same boy who makes me melt with love every time I look at him. He simply wouldn’t be my Pudding.

Potentially he could perhaps be a more ‘useful’ member of society. But then he could also have the potential to bully other children, drive dangerously, become addicted to drugs, or many other harmful things.

As medical science moves on apace, soon (even now) they will be able to screen for all sorts of things, from genetic markers for disease through to intelligence. What is right? Where do we draw the line? And who gets to decide?

I don’t have the answers myself. All I do know is that if pregnant me could see current me she would probably still be terrified about the prospect of MPS and all the troubles that it brings. But she would also see the smiles, and the hugs, and the kisses. And the overwhelming love. And I think that would make all the difference.