Category Archives: motherhood

Christmas is A-coming

There is a lot about Christmas-time that I don’t like. I don’t like the being ill. It’s a rare year when one of us hasn’t got some sort of hideous virus; before I gave up carol services, it was a tradition that, having learned all the parts, I wasn’t able to sing them. And the dark, dark mornings. I actually hate those. I hate having to drag my still sleeping body out of the warm cocoon of my bed, force feed it some breakfast and then drive to work. It’s torture.  And I don’t like doing it to my kids, either. The everything on top of everything else you usually do. That said, there are many things about Christmas that I do like, not enough to make it my favourite time of the year, but certainly enough to have it up in the top ten. The lights, the decorations, the ultimate in thumbing your nose at the darkness as we gather together and make our own light. The topsy-turveyness of the whole thing. I like that.

There is an inevitability about Christmas that I have come to respect. I don’t really have time to write this (I should be wrapping the final presents, ensuring that the number of gifts is equal for each child, I should be delivering parcels to beloved family members, washing my hair), even though I have taken some steps this year in an attempt to avoid overwhelm. Last year I limped my way to the Big Day, chucking out anything that wasn’t essential (gingerbread houses – gone! Red cabbage a la Nigella – nowhere to be seen! Cards? What are they?); this year, by doing some things ridiculously early (the lady in the Post office actually rolled her eyes at me during half term) and refusing to do some others, I have managed to carve myself some time to think and – strangely – today, I have given myself permission to write them (some of them down).

So, without stopping to think too much (if I do that, I won’t write anything because of Fear of Repercussions), here goes:

  • Working full time with three kids, one of whom is disabled, is very, very hard, and there is an extent to which I wouldn’t do it if I weren’t caught in an economic trap along with the rest of the world. There isn’t much time for anything else and every day feels like a treadmill and every weekend is not long enough. It impacts on my ability to maintain ANY social connection beyond working relationships, which, in turn, means that every day feels like a knife edge with no backup plan. Thank goodness no-one has been properly ill (yet).
  • When an acquaintance of mine who works in school improvement for a local authority told me one hot afternoon the summer before last that it would take two years before I saw change in my workplace after taking on the role of leader, and that those two years would be not unlike climbing an excessively high mountain the most difficult way imaginable, she wasn’t wrong.
  • When a wise woman said, ‘don’t try to change anything!’, she wasn’t wrong either. It takes a while for trust to build. People have to see you work, and work well. You have to learn your job. This takes time. Turning up every day can be enough.
  • Leadership is lonely. Disability parenting is isolating. There’s a reason so many people use social media.
  • There’s a difference between being a leader and being a manager. You can be a leader without being a manager; you can get people thinking and change their minds from behind the protection of a computer screen, but doing it up close and personal while checking that everyone has logged their sick leave correctly is entirely different.
  • You cannot allow work to take over your life. There has to be something else other than work. Yes, it’s good for my kids to see that I work too, that I do not exist to service their needs – but I do need to be there for them at the end of the day. It is I who should dry their tears, not they mine.

And so I am back to the inevitability of Christmas, the forced stop and do something else, something that isn’t work, that isn’t dreaming about work, thinking about it, writing about it. This year I am grateful for it.

Happy Christmas.

An Apology

Apologies for the silence. I’ve been a bit busy. I’ve been busy working, stretching myself thinly and growing fat on oven chips and posh pizza (we don’t like cheap pizza with its fake cheese topping and cardboard bottoms). It’s alright when it goes alright, a logistical Heath Robinson Affair, ready to topple as soon as someone runs out of leave. At least I haven’t got any marking to do, even if I have the report writing, the phone calls and the emails, so many emails on a continuous running stream throughout my working day.

And then there’s the appointments. Squeezed in between the school run and the supermarket delivery, I have to log in and use a password and it’s not even for me. I have to explain (again), cajole and question; is that blood test really necessary? Will it make any difference? Is there really no-one to coordinate it all? No paediatrician for a grown up boy? It’s me? Are you certain, are you sure?

And the meetings. The number of strangers touching our lives is growing daily and yet we can’t find anyone to spend the personal budget on. Economic migrants, we haven’t got a social network; we haven’t got time to form one. Even if we had, there’s no reason why anyone we knew would want the job. No-one wants an itty bitty job that pays peanuts, and I don’t know about you, but I can’t shift that sneaking feeling that there’s an element of motherblame that still hangs around us, whispering, poisoning.

Slowly, so slowly, ‘inclusive’, ‘inclusion’ has shifted its meaning. Slowly, so slowly, we depart, softly wrapped up and separated into a lonely little isolated world and I can’t help but wonder, as I sit in front of the fire in a haze of relief and slight bogglement that the weekend is finally here and tomorrow I can sleep beyond the alarm, who should be apologising to who.

Happy Birthday Darling

The day I was 18 it was overcast. I’d like to say I remembered the day vividly, but I don’t. Snatches jump into my memory; cards and presents at the start of English, my tutor, Roger, smiling and rolling his eyes, a pizza lunch with my mum and my friend Liz. Alcohol was probably involved somewhere, but I really don’t recall. Right before my A levels, I was in a frenzy of excitement and anticipation. This week, my firstborn, my S, was 18 too. Equally frenzied, like me, he went out with friends, not interested in staying home.

I feel chuffed when I look at the young man he is become. When he was that tiny baby and we were so worried the fact that he would one day be 18 was inconceivable. Toddler, small boy, stroppy teen, stages he has passed through (OK, so he might still be in the stroppy teen phase), the inevitable passing of time, the fascinating transformation through the ages – none of them have prepared me for my amazement at this birthday. It feels strange to have an adult child.

It hasn’t been easy, getting him to this point, and neither do I think my job is over. (I am currently huffing and puffing at the idea that I will have to apply to the courts for permission to assist my own child, but that is a story for another day.) There is plenty to be getting on with, but in some ways I think I can cautiously congratulate myself on a job well done.

This is not to say that it has been easy. Much of parenting, and you can multiply this for any sort of disability parenting I reckon, is hard work, from the almost mindless drudgery of wiping noses and arses to the withstanding of tears at bedtime and the constant turning things off. The ‘no’ word can become the hardest word, and sometimes it feels as if you, the parent, the adult, must have nerves of steel and a heart of stone.

To be honest, the disability thing doesn’t help. As a little one, S was the supreme example of cuddliness. His low muscle tone and a winning personality made him irresistible to many. His eyelashes have never had a problem working, and neither has his smile. Small in stature, especially when he was young, it was easy to kid yourself that, somehow, he would defy time and stay a child forever.

Like motherhood, there is an aspect of disability that is played out in public and Other People, every one of them with a different understanding of your child and most of them with the best of intentions, get involved (lots of them professionally). If you’re not careful, before you know where you are, your hard work is undermined by an ugly combination of opinion and pity.

But here’s the thing. Heartstrings are all very well but in the end there is a job to be done. In the end there is a challenge to be laid down and lived up to. That tiny baby, that little boy, he didn’t stay that way. He grew and grew and I am grateful for all the adults who did not give in, for all the grown ups who gently but firmly said, ‘no’ and, ‘hands to yourself’ and, when he said, ‘I can’t’ replied, ‘you can.’

Count Your Blessings

I’ve made it. We’ve made it. We’ve made it to the End of Term, we’ve dragged ourselves out of bed and into work and school before the sun was properly awake and returned home, picked our way through the fairy-lit dark, long after it had gone to bed for what feels like weeks. Everything about us was increasingly reluctant the further we advanced into December and the closer we got to the End Date and finally it is here. The children, exhausted by the effort of an eight-week term, have taken themselves off to bed early.

In a short few weeks, I don’t suppose I should refer to them as children any more, here or anywhere else. Next month, S will be 18, technically a fully-fledged man. L will enter her teens.  I will be one year closer to fifty (as will everyone else under fifty, I guess) and I am considerably greyer now than I was this time last year. Time, that constantly stretching, elastic beast, for all the eternal sense of the first night of the holidays, is speeding up.

When people ask me about my children, they no longer comment that I must have my hands full. I guess it must be obvious after all these years, but now, they are far more likely to give the knowing chuckle reserved for Mother of Teens than the rueful smile of Tired with Toddlers.

But here’s the thing. My house isn’t like other houses. My tribe of teens is led by someone different. I’ve noticed it before, when other people’s children came to play, but now I see it strongly reflected in my own. Here, it’s OK to be seventeen and still, somehow, see Father Christmas as a statement of fact, not one of wishful fantasy. It’s fine to want a ‘boy band’ haircut and unselfconsciously take a trip down memory lane with Rosie and Jim. Here, the presence of a big brother with Down’s syndrome allows you to be young, to be who you are, a mixture of heartbreaking innocence and slow awakening, to take your time in growing up.

When I explain that my son has Down’s syndrome to strangers or to new friends, so often the response is, if not sadness, then sympathy. Too often, we are so busy counting the deficits that we neglect to count the blessings.

Happy Christmas.

Maternal Mental Health

Back in March, I came across an article that I thought was very sensible indeed. Seeing as I am more than a bit worried about global warming (I’ve moved on from nuclear disaster, although I lost a lot of sleep over it in my early teens, worrying, as my school was nine miles away from home, that the bomb would go up when I was there) and also about equal rights, and generally interested in matters of education, it made a lot of sense. Educate girls through to the end of the secondary years and all sorts of wonderful things happen that have a direct impact on, for instance, world health and population growth, and thus the preservation of the planet.

Apparently, my auntie Pauline, a very old and somewhat mythical lady by the time I came along, I have a vague memory of white hair drawn back into a neat bun, and dark, dusty corridors with the sort of carpets that didn’t meet the walls, used to say that if you educate a girl, you educate the family; that, while the effects on the individual are profound, the ripples of your positive actions are powerful and far-reaching. And, when I think about it, an education does more than give young (and older) women the knowledge that will enable them to understand, and control, their fertility, but is the means to the confidence to ask important questions of their sexual partners too. No longer do women of my generation have to go through what my great-great grandmother did, and bear thirteen children because she was unable to refuse a Friday night after a visit to the pub.

The thing is, though, that I think that it is more than education that matters in the lives of mothers. I remember, almost as if it were yesterday, a conversation I had with my mum when I was expecting S, my firstborn. I was OK with being pregnant (although I did cry the day I could no longer fit into my jeans, because I knew that, from that moment, nothing would ever be the same again), but every time I thought about giving birth it was if I was staring into a black hole of terror.

“You’ll be alright Nancy,” she said, in that practical way of women who have been through the whole messy business and come out the other side, “it’s not THAT bad.” It was strangely reassuring. If she could do it, so could I.

That said, the experience was, for me, traumatising; and I know I am not alone. When S was tiny, I joined the local library (I’d given up paid work for a while, so I didn’t have any money) and one of the books I read was an account of early motherhood that took on the difficulties, face first. The sleeplessness, the constant responsibility, post-partum pain and the trials and tribulations of feeding the baby, no matter how you do it. It’s a treadmill, all on top of the physical shock that is giving birth. Even when it goes well (and I’ve done that bit too), and everything is fine, there is nothing about the process that is easy. There is a sense of being ripped apart – and then having to get on with nursing a baby (and possibly one or two toddlers) before the ragged edges have even begun to knit together.

Put traumatic birth, and by that I mean anything from mass intervention to emotional shock and something wrong with the baby, from jaundice to chromosomes, defects requiring surgery or brain damage, in the same event and you have a recipe for disaster in terms of maternal mental health and wellbeing. And, like an education, when a mother is well supported, so is the rest of the family.

What annoys me is that we know this. We know that the mental health of mothers of disabled children is fragile. We know that when there is a disabled child, there is often a slow slide into personal isolation, marital breakdown and poverty. We know that the lives of mothers of disabled children can be dominated by conflict and struggle, with education, with health and social care – and yet what are we doing about it? The Children and Families’ Act?

There are real and concrete actions that maternity services could put into place in order to support new mothers, and thus the wider family. Greater support from midwives and health visitors, access to a counsellor – and not just one offer, but an open door, especially where health concerns over the baby mean that mama is a long way down the list of concerns. It shouldn’t get to crisis point before someone steps in. We need to stop pussyfooting round the edges with our educational solutions and go right back to the start.

I, it seems, was lucky.

And I hate writing that because I don’t believe in luck.