Tag Archives: Down’s Syndrome

Sharing the Load

One of the things I have been struggling with lately is the notion of myself as a carer. It’s very strange. I remember, when I was expecting my beloved first-born, the very idea of me being the parent, the mother to another person, was astonishing. When he first arrived, a tiny bundle with a home-made hat, safely contained within the hospital Tupperware, there was a suspended time when I looked at him (and to be fair, I repeated the experience a further two times) and wondered what he had to do with me, and what I was supposed to do – and supposed to feel.

At the time, it was one of the things that disturbed me; this idea that I should instantly ‘fall in love’ with my child, as if motherhood, and all it entails, was supposed to come easily, that it was somehow as natural as falling off a log. (‘Cos you know, there’s a lot of falling off logs that goes on in day-to-day life.)

When you think about it, there’s a whole lot of things that mothers are under societal pressure to somehow find a doddle, a pleasure even. Breast feeding. Home-made purees. Broken nights. The wiping of bottoms, noses and sick. Constant laundry. Tidying up after everyone else. The pressure is on to make you feel as if you should Enjoy Every Moment and if you don’t, then there must be something wrong with you. You’re not a Real Woman, or you’re a Bad Mother, you can’t cope or something.

And then, of course, there is the whole disability thing. If you dare to bring to birth a disabled child – and I don’t think that this is specific to Down’s syndrome, although, given the antenatal screening that takes place you really wouldn’t think so – then it’s as if the only acceptable response from you, as a mother, is to throw yourself down on the altar of motherhood, either as some sort of public advocate for disability rights or by negating any needs you might have of your own for a separate kind of life in deference to those of your child (remember the woman who was awarded her own degree, after attending so many lectures with her disabled son, in order to ensure that he actually got there, at her son’s graduation?).

The hardest thing for me, though, is not that we should enjoy this process but that, somehow, the expectation that we should do all of this on our own. We are already isolated, working hard, paying the ginormous mortgage, travelling to work, to and fro, in our little metal boxes. We have separated out work and home, spheres with edges that kiss, but only in the evenings. And it’s not just our personal lives. Apparently there is no “I” in team, but even the seemingly most collaborative, collegiate of professions (teaching, the one I know the most about it has to be said) are increasingly set in the ways of individual competition.

You know, this is where I think we have got it wrong. Bringing up a family, the next generation, no matter how we might construct it, or what our role in it, personal or professional, is not the sort of thing you can do on your own. You need your friends, your wider family, your colleagues, around you. You need the people who are supposed to be supporting you to join you, not to sit in judgement, or complain that you didn’t stick to the plan, or that you are somehow less or shamed because you actually admitted that you needed help.

We can’t do it on our own and that’s OK.

 

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The things you don’t say

I’ve been a very busy girl lately (no change there, then, I hear you cry), much to the detriment of this blog and, no doubt, my family life, as much of my activity has been to do with work (a girl has to live, after all) rather than running around after the kids (something I fully intend to do this weekend, starting tomorrow). I’ve been busy, not at the computer, but out and about, in schools, training events and, yesterday, at the Academies Show at the Birmingham NEC.

I’ve been speaking about inclusion, and what it means on a personal and societal level, for children and the adults they will become. What I’ve said has, in the main, been well received.

You wouldn’t think it, after all, I am used to presenting things and talking before an audience, but, seeing as I tell my personal story, I’ve found it a nerve wracking experience, and yesterday was no exception. The last time I was in the NEC it was for a birthday visit to the Gadget Show; I felt disoriented and anxious and worried that I would take up too much time from the person following me. So I rushed.

Sometimes when I speak I don’t bother with many notes. I’ve thought about and internalised my stories so often that a picture prompt is all I need to get me going. Yesterday, though, was different. Mindful that not only was I representing myself, but Sam, and my employer, I prepared carefully. I planned my talk and wrote it down. I even timed it. A fact which I promptly forgot when faced with a real, live audience.

So I did what I have often done in the classroom; I chopped and changed, moved things around to suit the circumstance (or at least the situation as I perceived it) and, when I stepped from the stage, and looked down at my notes, I realised that, as in so much of my life, there was vast chunks of stuff that I didn’t say, and that I wished, as I drove home and cautiously negotiated the traffic in the darkening gloom, I had.

I wished that, when I talked about friendship, and the importance of making friends with the young people with whom you go to school, I’d told them that although the same set of children came to all of his parties, he didn’t go to theirs. 

I wish that I’d reminded them that the point of a mainstream education for a disabled boy like mine was not that he could be best friends with a woman older than his mum. 

I wish that I’d followed up with my assertion that those of us with disabled children have just as much right to be happy as anyone else – and that this meant living without the conflict with professionals that you are forced into when the state takes an interest in your family life. 

I wish I’d told them how hard it is to ask for help – and the difficulty of having to ask again, and again, and again, because someone’s policy is to save money and keeping quiet about what you are obliged to pay for is one of the ways you do that.

I wish I’d told them about the fear. Of the future. Of change. Of not knowing what is happening or what is going on. Of the difficulty in trusting someone else with your precious child because experience tells you that not everyone sees the world in the same way as you do, and how that makes you appear from the outside.

I wish I’d told them that I don’t care about the process, or even about the policy. That I just want to work to find a way forward for someone I love, and that I am sick to the back teeth of being told I am wrong, that I am doing all the things the wrong way or asking for the wrong things. That somehow, everything is actually my fault.

But these are all things I didn’t say. There are always things you don’t say.

The talking watch

My dad loves to give gifts. When he was a boy, family tradition says that one of his uncles (he had many uncles, but no cousins) used to have everyone over for Christmas dinner and enjoy himself, as host, by, every so often, appearing with another gift, much to everyone’s delight (in particular, my dad). Today, he likes to carry on the tradition, not at Christmas, but when he visits, and my children greet his appearance with great joy and anticipation, as they swarm around him like cats, winding their bodies around his legs (or at least they did when they were younger), waiting for the inevitable to appear out of one of his many pockets (my dad is a man of many pockets, which is or is not an advantage, depending on whether you are looking for your glasses or your keys or not).

Having a family of grandsons has clearly been a source of purchasing pleasure for him, the father of two daughters. In some ways he has revisited his youth, with candle steam boats that float in the bath, microscopes (complete with accidental sample of grandfatherly blood) and all manner of funny games and build-it kits heavy with meaning for him (and none at all for me, except that I just know he is itching to buy my daughter a lurid make-up set so that h he can declare in sonorous tones laced with laughter, ‘let their make-up be like clowns’ – I began experimenting with make-up around 1985; I’ll let you draw your own conclusions).

Recently though, his gift buying has hit new heights (or depths, depending on your perspective); last Christmas, he bought Sam a talking watch. Now, Sam has been hedged about by timepieces for some time. I bought him a digital watch one year, a great big chunky orange one which he wore with great pride until he lost it (it turned up again when I swapped handbags). There is a teaching clock on his bedroom wall, and for many years, day and night were marked by a light up bunny that slept at night and trotted off into the big, wide world, knapsack on its back to the tune of early morning birdsong and a cock-a-doodle-do as soon as it was day. For all his difficulties in learning, Sam is getting along well with telling the time.

He doesn’t have an obsession with punctuality. Unlike his father, his default setting is generally later, rather than early. If it were up to him, I’m sure he would be perfectly happy listening to his internal rhythms and following them, note by note. No, Sam’s familiarity with the mechanical underpinnings of the daily timetable spring from our efforts to effect change. Sam is, you see, an early riser and we are, as I am sure you understand, heartily sick of being woken up.

It’s pointless trying to change Sam. He wakes up with the sun and who can blame him? During the summer months (I never thought I’d be glad of the dark mornings), with an Easterly facing bedroom, the sun gets up – and so does he.

I’m not sure that the bunny clock ever really worked (despite my jabbing finger and hissed instruction to OBEY THE BUNNY). Asking him nicely to keep the noise down and let the rest of us sleep works up the point when he decides that he is bored, all on his lonesome, and it’s time he had some company, or some breakfast. Sam is, for his sins, a single-minded person with, understandably in the young, a personalised set of priorities.

But the talking watch. This has been a genius gift. After all those years, Sam knows that 7am is the time for getting up, even though he chooses to ignore it and either get up and crash about or stay in bed and crash about until the rest of us, red-eyed and gritty-tempered are forced up. You see, there is no arguing with the watch. It’s time is set remotely, radio controlled from Far Away, and it always tells the truth; it never changes its mind, or its tune. We finally, after all these years, have found the thing that has changed the game.

Because it’s true, you know, that you can’t change the person. Sam is not a mistake that needs to be fixed. He is not someone who can be forced to fit in, no matter how much we might want him to just do as he is told. Bawling at him might provide a temporary respite, but it never works long term. It’s never easy, figuring out what it is that needs to change – and even if you do, it might not be possible; after all, we live in a family and we have two other, younger children. Like teachers in a classroom, needs must be balanced, weighed up, and the best course measured.

Finding the thing that he understands, making subtle changes to the things that surround him, removing barriers, works.  Because it is then, and only then, that he is able to make the change, for himself.

100% Literate

All children reading by age 6.

Apart from those who haven’t got the hang of speech sounds properly.

Oh, and those with a literacy difficulty (as yet, undiagnosed, because they are only 6).

And those with a diagnosed SEN.

And disabled children.*

Obviously, we don’t mean those children. THOSE children will never be literate.

Or will they?

 

Maybe we could stick with the 100% and look again at what we mean by literacy.

 

*children with Down’s syndrome were deemed ‘educable’ in 1971. It is only since 1981 that they have been able to attend mainstream schools.

Elastic

This week has been one of journeys, of visits, to the past, and glimpses of the future. Sam, at 16, is leaving the care of paediatricians, moving towards adult health services, and together, we are making our way between appointments, visiting the places and people of our shared past.

There are changes in us all. Instead of a rough collection of post-war prefabricated huts there is a brand, spanking new Children’s Centre, but, funnily enough, many of the faces are familiar; over the years, the medical staff have rescued one or other of my children from the jaws of whichever illness was threatening to pull them under more than once or twice. One of the reasons, after our housemove, we have opted to stay on at the same trust is the continuity. Many of the health professionals who see Sam for routine check-ups have known him, and me, since he was born.

This week, after the hearing aid debacle (I have checked everywhere, in and out of pockets and bags, the washing machine and the reception desk at college), it was the turn of the heart scan. It’s been on the horizon since the summer; twice now we have had to postpone, due to holiday or work commitments. The date has been on the calendar for at least a month, a final check, just to be sure.

Sam’s heart hasn’t had such close attention since he was three days old. That day, bleak, and grey, the tail end of January, was wet. Instead of sunshine, the crispness of a golden autumn, it was slick. Brown and dirty; the dampness in the air, the remains of tears, the shaky sweat brought on by the hospital and a darkened room cooling in the cold air. Then, he was a tiny baby, he hadn’t been home, hadn’t had his first bath; now he is on the cusp of manhood. This was the morning when together, we looked in the bathroom mirror as he shaved the beard that is slowly roughening his baby face.

It was supposed to be no big deal. Like I said, it’s been on the calendar for months. Over the years, we have got used to dividing our time, not exactly taking turns, but attending the appointments, of which there are many, separately. Most of them are mundane. Most of them require only the polite boredom of waiting your turn, the oft repeated recitation of a medical history, the everso slightly defensive spike, the sensitivity to unsaid, but assumed stereotypes. I was unprepared for the wash of emotion, the tidal return of a day long gone, when I feared, when I truly feared what our future might be.

There was no reason to fear. There was no sign of breathlessness, no dusky tinge to his skin. As he has grown, he has become a vision of good health. I knew that this scan was a formality, a chance for a doctor to see the baby grown, to shake his, and my hand and say goodbye. But still. There are moments when reason does not feel strong. There are times when the echo of the heart is an unstoppable force. It overwhelms, and it catches you out.

We left with a smile. A wry admission that we hope never to meet again was our goodbye. We move on. We may carry the echo of that dark January day, but today there is sunshine. Today, there is tomorrow.

via Daily Prompt: Elastic