Monthly Archives: November 2017


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.

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.

I hate the way

I hate the way I walk in the footsteps of fatigue.
I hate the way of winter.
I hate the way life is magnified.
I hate the way that the setting is slow motion.


I hate the way I am no longer independent.
I hate the way I am rarely alone, but constantly lonely.
I hate the way it draws me to conflict.
I hate the way it feels so endless.


I hate the way I fear the future.
I hate the way the past is lost.
I hate the way it makes me cry.
I hate the way that I am not supposed to hate.