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.




I thought it would be a good idea to write a quick blog post about something that happened today, just to make it absolutely clear to readers where I stand on the issue of consent.

I write a lot about my son, who has Down’s syndrome. I use his name and his image. I am, I think, quite careful about both the stories I tell, remembering always to bear in mind his dignity and the images I use; as he grows up and is more and more aware of my life as a writer and his role in it, I make sure to ask him if it is OK, or use an old or connected image.

I occasionally write about my younger children. I never mention their names, and I do not use their images in order to protect their anonymity.

Using the image and stories of a disabled young person are issues that are hedged about with issues of consent; it is important to both protect their dignity and to ensure that they are safe. There are many stories I do not tell and images I do not share in order to do this.

Today, an influential and widely read teacher-blogger linked to my blog and quoted me extensively, in order to make a point in an argument he was having with some other commentators about the use of synthetic phonics in the teaching of reading. I’m not going to link to it here.

This is OK. If he wants to characterise me in an unattractive/negative light, frankly, I think that says more about him than it does about me.

Unfortunately, what he also did was to mention my son, by name, in his blog. He did not ask my permission, or my son’s, to do this. This is not OK.

My son, by virtue of being a disabled young person is automatically a vulnerable young person. As teachers, we have been on enough safeguarding courses to know that we do not put vulnerable people in harm’s way. We don’t do it in our real lives, and we don’t do it in our virtual lives.

If you, as a reader of my blog, want to quote me, even out of context and even if you are attempting to paint me in a negative light, I might not like it but I am an adult and I can stick up for myself.

You do not have my permission to publish material about my son that identifies him, or use his image without his or my consent.

My material has been published on other websites, in print and in mainstream media. My son’s image and stories have been used in these contexts with our consent. If you wish to use them, you may ask, but you may not automatically get our consent.

Asking for consent is important, and is not negotiable. If you make the mistake and overstep the mark, I expect you to take the material down and issue an apology.

I have not checked, but I believe the influential teacher blogger when he tells me
that he has taken down material that identifies my son. He is a teacher, and he knows that keeping young people safe is important and part of our duties as teachers. I have not had an apology.


This is different to linking to my blog using pingback, which is entirely acceptable and to be expected. It is the writing about my son, and the use of his name, which, linked to mine, could identify him and put him in danger, without my or his consent, that I object to.

Thanks for reading.



The thin, veined membrane
Trembles as the
Tough, outer shell peels away.
Perfumed oil spurts
High into
Still air.
Droplets catch light,
Fill the room with fragrance
Until they fall,
Dampening hungry fingers that
Seeking and removing the sticky sinewed string and
Soft velvet cushion
Of bitter, protective pith.
Naked, juicy flesh waits
For sharp teeth.



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.

A Baseline Assessment

I was going to write something about the act of getting children to do things for themselves (after yet another morning of noting to myself where Sam randomly put his bag, hearing aids, lunch and shoes – after eleven years of getting that boy to his place of education I have learned a thing or two, I can tell you), but then I read this (it’s an advert for the tendering process for the job of designing a method by which four year olds can be assessed when they start school in order that the effectiveness of schools can be measured and the public money we spend on them accounted for) and I was right put off the idea.

Instead, as the mother of medium-sized children, I was left, while I was cooking the tea (pizza and salad – more an assembly job than actual cooking, I suppose), ruminating upon all the ways that the shadowy hand of the state can get in the way of you enjoying your family life, good and proper. All with the best of intentions, of course, but perhaps not with the eye firmly fixed upon what is good for families, that is, policies that help families to find, and keep, secure homes and live in such a way that anxiety, the sort that increases the chances of a home full of conflict, is reduced.

Way 1.
Make your families feel that their child is somehow some sort of second class model. There are lots of ways you can do this, from the traditional, ‘I’m sorry, Mrs Sam, you appear to have had a non-baby’ to the insidious ‘you have to remember what they take away from the rest comments’. Follow that up with the continual homework, reading, test results of the school kind, and you have a recipe for anxiety about your child’s future (if they aren’t the sort who are good at performing to such an adult tune, that is).

You can start this at birth (or before, if you really want),  or you can wait until they are in the school system. Either way, each assessment point offers a myriad of opportunities to crank up the fear, and the more money you spend on your testing regime, the more wedded to it you will feel, and the les spikily you are to want to give it up.

Way 2.
Make your adult members of families feel like failures. You can do this in a huge number of ways, from ensuring that they find it difficult to pay the mortgage to assessing their children and constantly going on about how the children of rich families do better in school when they are compared to the children of poorer families because, parenting.

Way 3.
Deliberately increase the chances of conflict within the home. Homework coupled with strict policies as to the consequences for when it is undone (the younger the child, the better) is a great place to start, followed by rises in the costs of food, energy and housing. While you are at it, you can berate everyone over healthy/unhealthy lifestyles and add in a good dollop of guilt (see, bad parenting above) for the hell of it.

Way 4.
Encourage the idea that you have to (or your children have to) reach certain standards – of education, of income, of the ownership of Stuff – in order to be deemed a successful adult. Make this success achievable through competition, rather than cooperation.

You can use both official and unofficial channels to achieve your aims; basically, the more you use, the better, because then you can convince everyone that the situation they find themselves in is both inevitable, natural and entirely their own fault.

When you think about it, it’s a good thing there is such a thing as Down’s syndrome to come along and show us that it really isn’t.