Elimination

Today, I’m REALLY fed up with washing the wet bed. He’s 12 and I’ve surely experienced every emotion possible about the nocturnal toileting. The patient acceptance when he was younger (because there were so many more pressing problems, e.g. daytime toileting and the irrecoverable pants) which then turned into irritation, anger, brief moments of joy (when he didn’t wet for a week), disappointment (when he did wet again), fear (that this may never end) and then, today’s tired frustration. The seven stages of nocturnal enuresis.

As always, I am aware that there are worse things to be living with and I’m also aware how far we’ve come with toileting (pants only fit for the bin are now all but past). But often it’s the small, ongoing challenges which drain the most from my reserves.

Mostly he wears nappies but isn’t always willing and I wonder how long he’ll fit into the gigantic toddler range and when will we have to take the leap into adult (in)continence supplies. (Cost is also a bit of a factor. I’ve taken to buying Tesco’s Everyday Value nappies – just £1.40 for 20! They’re nappies without a jaunty picture on so we’ve taken to calling them Prison Nappies, general issue (in)continence supplies.)

Unsurprisingly the professional advice re nocturnal enuresis in Fragile X is unhelpful; Drink more! Drink less! Wake him late! Wake him early! Keep a diary. And of course my old favourite – Star Chart! Nothing makes any difference and apparently the two medications available aren’t appropriate for him.

So we go on, the house smelling faintly of wee, my washing all somehow smelling faintly of wee, his mattress delicately patterned with faint yellow blooms, the duvet gradually absorbing excess and smelling gradually more strongly of wee. I optimistically bought a new mattress six months ago. It’s still propped up in the back room until a time where either a) I get fed up with it being propped up in my back room b) I don’t care if it gets trashed or c) someone finds a miracle cure for bed wetting in FX.

Most likely he’ll do it in his own time, just like he’s done everything else, with no definable explanation or obvious reason. At which point I’ll be free to move on to the next thing to stress, rant and obsessively Google about.

I’ll keep you posted…images

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Shellfish

downloadWhat kind of coulis will we be having with the panna cotta?’ and ‘Why don’t we ever have lobster for dinner?’. Just two of the many gastronomic questions my ‘severely disabled’ 12 year old has asked recently. Whilst so many children (typical and non-typical alike) seems to struggle with food, stropping over broccoli, eating nothing but jam tarts or throwing a wobbly when a pea crosses the path of a potato, food issues don’t generally seem to be a part of fragile X (huge generalization I understand, and apologies to those parents for whom mealtimes are yet another battle).

Having weaned my son on pumpkin curry and vegetable tagine and fed him on home made cake and bread until he’s crying out for a white sliced and a Mr Kipling, I’ll take a bit of credit, but can’t have all of it. He just loves food. He was the one who insisted on buying mussels and the first to try one with not a bat of an eyelid as I watched, almost through my fingers – I always had a fear of foods that go clickety-clack on the plate. ‘They’re nice, try one‘, he said and I did and they were. He cured me of my shellfish phobia.

Which is why one of the things that bothers me, and one that might seem trivial, is what he’ll eat when he leaves home. I get so much pleasure from good food, from thinking about it, cooking it, eating it and more than anything from sharing it with my son. The problem is, I don’t think healthy eating features very highly on the social care agenda, let alone gastronomic delight. So my son’s diet, wherever he lives after leaving home, will probably be at the mercy of whoever cares for him, be it countless, poorly-paid individuals in a supported living placement or maybe a chef working with criminally low budgets in a residential home.

It’s highly unlikely that he’ll be able to plan, shop for and prepare anything but basic meals by himself and, rare steak and crispy-skinned sea bass aside, he is only human and so loves a cheap burger and oven pizza as much as the rest of us. Even more, he loves anything quick, simple and stress-free. He also lacks the understanding that junk food = weight gain and health problems as well as the kind of vanity that makes many of us think twice before taking the quick and dirty path to dinner.

So yes, there are more important things for him – safety, happiness,  good relationships, meaningful employment. But it still makes me sad that this thing that we bonded over and found so much enjoyment in, and that under different circumstances could have lead to a career, or at least a hobby might just slip away and stop being a part of his life. I’m sad that there’s always a compromise.

Maybe it won’t be like that though. I hope that when the time comes for him to leave me, we’ll find somewhere that can accommodate his palate and maybe give him the opportunity to share his passions and skills with others. And that one day he really will have lobster for his dinner.

The Guilt

Today in school was a coffee morning, a chance for current parents to nose around the classrooms and for parents of next year’s intake to be reassured that transition doesn’t necessarily mean heartbreaking trauma. My son has been in this special unit of a mainstream secondary school since last September and he loves it.

I went to the same event at this time last year. I sat in the same chair in the life skills room with the sun slatted on the carpet, drank a very similar tiny cup of instant coffee and ate an almost identical Jaffa Cake. Only this year I didn’t have to spend the whole time concentrating so hard on not crying that my throat got sore. (Even though I’m not a fan of the very popular ‘where does the time go’ platitude, I had to admit to myself that the last year has really gone fast, and that it’s been a pretty good one.)

We year seven parents were invited to share our experiences and maybe our advice of transition and so I (always happy to talk about myself/my son) and another mum said how happy we were, how smoothly it had all gone, what a wonderful class etc. etc. I also mentioned about how proud I am of my son for getting the bus to and from school sans fuss or dread and how great it is he can now button a shirt, how his reading, writing, time-telling are all improving, blah, blah…and on the other side of the room, an older mum whose daughter will go into the school next year obviously couldn’t hold back the tears any more and began weeping, quietly, sadly.

It’s times like these that reality always kicks in. This mum surely makes it through each day making sure her child eats, stays clean, is happy and she can probably sometimes forget about the problems and forget about the darkness she feels about the future. Despite how friendly and supportive these events are and how obvious it is that the staff care deeply about the children they look after, despite all of this positivity, it’s precisely the kindness and planning and support that remind us all too sharply of our reality.

This mum’s daughter I then realised would be transitioning into ‘Sparkle’ classroom, aka the profound and multiple disabilities class. For this little girl, the prospect of reading, writing or buttoning a shirt are as unreachable as a professorship is for my little boy. So I left feeling guilty and insensitive and stupid, but also appreciative and humbled.

Bizarre to feel guilt at my twelve year old’s almost-ability to button a shirt, but a healthy dose of perspective is as good a way as any to wash down a Jaffa Cake.

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Opportunities

Today I dropped my son off at school at 6.30 am for him to go on a trip to a snow dome, in practice for next year’s ski trip to France.

I remember an occasion about ten years ago, just after his ‘probably autism spectrum disorder’ diagnosis where I stood by the sink washing up, alone, late in the evening, in my tiny terrace, weeping. All I could think was, this is it. This is my life, his life. And I saw myself in thirty years, haggard, still washing up alone with my helpless adult son living in my spare room. Prone to the dramatic, I truly imagined that the diagnosis, as vague as it was, would imprison us and rule out normality, happiness. (An insight into my poor grasp on future reality: in my skewed imaginings, my 32 year old son wears home-knit jumpers and elasticated trousers).

So I spend a lot of time advocating and talking loudly about disability rights and equality, criticizing others for what I consider to be the ‘wrong’ attitude/words/actions. But even now, I’m not sure treat my own son in an equal way, or estimate his future or opportunities accurately. And that’s the point. Whilst I often berate friends for their fortune in being able to kid themselves that their child’s future will be OK and bemoan the starkness of my son’s fate, maybe I should just join in and learn that equality = also not knowing what’s to come.P1020073

Next year, as he flies down the slopes of Chamonix and enjoys a bit of apres ski with his friends like any NORMAL 13 year old school kid, I need to remember that self-pitying, worst case scenario vision at the kitchen sink and remind myself that maybe, things might just be okay for us too.

Background

A bit of background.

I’m a single mum (independent parent if you will) who had a baby rather than a termination and set out on the lesser trodden path of disability, genetics, grief, anguish, frustration, optimism and acceptance (to name but a very few details not necessarily in that order). My son has Fragile X Syndrome, a genetic condition which causes learning disability and autism-like characteristics. I’m a carrier of the condition as are my sisters and my dad and probably many other ancestors before us, although it’s something that’s only recently revealed itself. FX changed the focus of my life, altered the way I think about myself and warped many of the norms and expectations I hadn’t even consciously considered.

We’re only twelve years in but already I often feel finished off by fragile X. Other days I feel triumphant. Most of the time I don’t actively measure its effects and simply get on with it. But it’s always lurking, surfacing on a walk in a moment of reflective clarity. Or as the lonely, angry helplessness after a (more-often-than-not) frustrating encounter with a professional. And, the most common, alongside the military planning required for something mundane (a meal out? a walk?) as the bitter taste of self-pity.

I feel lucky – I have a beautiful, funny, brown-eyed, shiny-haired boy who requests lobster for dinner, does a mean Krusty The Clown impression, who hops on the school bus each morning with his charming perma-smile, who often skips instead of walks and who calls me ‘big friend’ and brings me a glass of wine when I’m tired.

I feel unlucky – I have a boy with such high anxiety levels that whenever we leave the house there’s a chance that a sound, smell, sight or thought could trigger vomiting, aggressive tantrum or refusal to move, who still isn’t fully continent and who will never live without support, for whom I’ll probably have to fight, argue and negotiate for the rest of my life.

We’re certainly not the worst-off people in the world. It’s just not quite what I’d thought…