Category Archives: motherhood

The Mirror

I have a mirror hanging on my bedroom wall. R doesn’t like it. He says it’s a heavy, old-fashioned thing. It is one of those mirrors that hangs from a square-linked chain; the glass is framed in wooden gold, the edges rubbed from precious metal to dull grey-bown. It belonged to my great grandmother, I inherited it when she died, so it stays.

Wherever we have lived, upon whichever wall it has hung, it has never been at the correct height. At the moment, the hanging chain is twisted into a knot; if you want to see your feet, you have to stand, on tiptoe, in the bin in order to get the angle right.

These last nine years it hasn’t mattered much. I don’t have to make a great deal of wardrobe decisions. I tend to wear the same few things, day in day out; one lot for work (mildly traditional teacher clothes, smart enough to be smart, but not so smart that you either put the kids off or annoy the boss), one lot for home (jeans). I haven’t been to a wedding for seven years. My last job interview was a good long while ago (and I wore my trusty interview outfit).

And then there is the speed at which I get up and dress these days. I look back to my teen years and wonder what it was I used to do, spending all those hours and hours getting ready. These days, with three reluctant children to winkle out of their night-time cocoons, I have been known to leave the house without properly checking whether I resembled Yummy Mummy or the Wild Woman of Borneo. The mirror hangs, silent and unloved.

Most of the time, as I charge about, rushing from one place to another, our interactions are brief; gone is the self-indulgent gaze of my younger years. Today, I am more likely to experience a sense of shock, rather than of satisfaction. Where did those grey hairs spring from? Those lines on my forehead, when did they appear? What happened to my middle when I wasn’t looking?

It’s easy, when you are the queen of the cursory glance, keen to persuade yourself, despite your years and the size of your children, of your youth and immortality, if you stand always at your best angle to the wall, shoulders back, stomach in. It’s easy to persuade yourself that you are, in fact, the filtered, airbrushed image you have on your social media feeds, even though it’s hard to dismiss that same sense of dislocation you feel when you meet someone from off the telly and find they are nothing like you imagined, when you catch sight of yourself in shop windows, a chubbier-than-she-thought-she-was, older-than-she-imagines-she-is, tired looking woman.

The thing is, though, I don’t think it’s only me. Oh, I don’t mean that the whole entire world is populated by busy women who forget to take care of themselves (although it probably is). I mean that we, culturally speaking, have forgotten what we look like.

We have forgotten that we are not, as we would like to think of ourselves, somehow superhuman. We have forgotten to look in the mirror and see who we really are, instead of how we wish to be.

I suppose if there never were a child or person with Down’s syndrome, if there never were a child or young person with extra requirements in our schools, it wouldn’t matter.

But there is, and there are.  And it does.

Find out more about Through The Looking Glass, a report from the Driver Youth Trust here.

Trench Warfare

Did you ever read the books about the First World War by Pat Barker?  (Yes, I know one of them is missing – someone, not looking at any of my relatives, must have pinched the first one.) I did, some time ago now.  I bought them when I was the kind of person who had the time to hang around in bookshops on a Saturday afternoon, browsing those big tables, piled with not-quite-skyscrapers of paperbacks, looking for something to spend my disposable income on.  I haven’t read them in a while, but I remember them vividly.  Whenever I have a clearout of my bookshelves (which I do on an infrequent, but regular basis, contrary to public opinion) I hold them in my hand, weighing up whether or not I wish to pass them on, and so far, the answer has been, ‘no’.

A couple of things stand out in my memory of them.  A couple of things that struck me, and have continued to strike me, over the years since I first sat dreaming, transported to a world gone by, by a skilled writer. The first is the enforced femininity of trench warfare. The endless waiting. The powerlessness of the men over their own fate. The obedience to orders they had no power to challenge. The care and concern by the officers for the men, over their wellbeing, their health, whether they had enough food, shelter or clothing. The difficulties that some men had in bending themselves to an unfamiliar state.

But the thing that echoes, the thing that haunts me, was the look in the eye, the shared experience, in this case of the horror of war, that asked, ‘Have you been there? Do you understand?’

In many ways it’s a bit like childbirth. Or traumatic childbirth, anyway. Or the bringing to life of a disabled child, of Down’s syndrome, come to that. In a sense, unless you’ve been there, you don’t understand. In many ways, no matter how many of us write or speak in our attempt to make the experience about the universal, you can’t. Unless you’ve been there, you don’t know what it is like; the forced femininity of powerlessness.

We think we might understand, because we have children of our own, or we hope to one day; we think it is enough, but we betray our assumptions with the questions we ask. So busy to show we understand, we forget to listen.

It’s the same with teaching.  Like nursing, or the law, it’s a profession with an illusion of transparency because we’ve all been in that classroom (pretty much), we all (pretty much) send our own children there. But it is an enclosed world. Even within the sector, our differences make only some of our experiences transferrable. Our own experience overlays understanding. Unless you’d been there, you wouldn’t know.

And how easily we forget. I forgot, when I went on my ten year maternity leave, what it was like. It’s so easy to know your own child, in the early days, anyway. You watch them so closely – you have to or you fear they might die – and you forget that it’s impossible for a teacher to know them like that, to be able to adapt like that. You have your home set up to accommodate their needs, a nearby toilet, quiet spaces, freedom of choice – and you forget that when you teach, you just can’t do that.

You forget, when you know them so well, that it takes time to get to know a child, and that that knowing comes from spending time with them, in context, and not on a piece of paper, for yourself, and not through someone else’s eyes.  When you have a child, the responsibility can feel overwhelming. When you have a disabled child, even more so. You will be accountable to them for the rest of your life. But you forget that other form of accountability, when you work as a teacher, the one you have towards multiple children, all equally deserving, towards government, parents, inspectors, the boss.

How easily you forget the never ending pile of things to do – the stack that grows by 30 every time you teach a lesson. You can see it in school leaders who merrily state in staff meetings, ‘it should only take a minute’, while the classroom staff quietly look at each other under their eyelashes and wonder who will point out that what seems so reasonable when you times it by one, is not a simple matter, when multiplied up. What seems so simple, from a distance, from the computer screen or from the office – from the home, even, when it is played out in the classroom, is, indeed, complex, and that the description of the complexity leads us into ethical dimensions that take time to work through, time to understand.

When I went back to work after my long absence it was a was a wake-up call. It was a reminder that I wasn’t perfect – and neither should I, could I be, that entrenched positions of enmity never help the child.  It was a reminder that, while I held responsibilities, I didn’t hold them all. I could not hold them all.  Being something and nothing, a split person,  a balancer along the tightrope, one of them and one of us, helps. Because when you walk in someone else’s shoes – or you put your old ones back on – you remember.

Have you been there? Do you understand?

 

The Bird

There is a bird that flies in my imagination.  In my mind, she flits between personalities, sometimes fierce, sometimes tired, always symbolic.

I like to think that in her younger days she was like a swallow.   A creature of the summer sky, she would swoop through the crystal air, taking her chance to dance, just because she could.  She would cover vast distances easily; nothing would ruffle her sleek plumage.  Any danger or shadowy sense of doom would be outstripped by her speed and agility.

But, when I think about that bird, I cannot see her younger self.  The swiftness of the swallow exists purely as a moment in an imagination intent upon exploring a metaphor.  Far more powerful, more strongly imprinted on my mind’s eye is the bird of prey. Not showy; camouflaged. Easy to miss if you didn’t know she was there.

This bird sits (she does not perch); she claws herself into slick rock, or digs into the narrow platform of her solitary vantage post, her feathers separate and spiked in grey rain.  She does not fly often, rather, she waits, waits for a moment that, perhaps, will not come.  What she waits for I do not know. Perhaps a break in the weather, perhaps prey. Her stillness is her defining factor, punctuated by the flicks of feathers against the dripping rain, the flickers of focus that betray her gaze.  Hers is a world-weary eye.

She is the contrast to the movement that surrounds her.  The falling rain, the branches of the trees, disturbed by the howling wind. Leaves tumble and flutter to the ground. Birds, large and small, the young chasing, the old leading, navigate the rolling clouds. Her power is contained, restrained; her wings may itch to fly, to join her kind, but they do not stretch, her moments must be well chosen, too precious to squander on a flight of fancy.

For this bird is not the sort that flies, free from care or from responsibility. This bird is not the sort that has reached this point unscathed. She carries her past with her; her pain ensures the precious nature of every flight.

I wonder what stories she would tell, if only she could. I wonder what wisdom she would impart, but she settles, a shiver, a shrug of her shoulders, a hunch against the elements. I wonder who she hides beneath her wings.

 

 

 

 

The Fear of Food

I read a post the other day, a simple, factual piece about the reality of parenting a child with complex needs, and it struck me, again, how much less I would know if it weren’t for my Sam.

I can use a great deal of what I have learned over the last sixteen years together in my professional life. Reading behaviour, the tiny expressions that flit across the face of a child, gives me insight into how they feel without them having to utter a word. I have learned when to press and when to back off because someone has had enough, as well as honed my ability to see the small steps in learning and look for the next.

Some of the things I learned though, the things I wouldn’t have learned if he wasn’t there, are faded. They slip into the recesses of my busy mind, and I fall into my habitual state of believing that I don’t know very much about anything really; that I am unqualified.  Now that my family has slipped into the comfortable groove of routine, with only occasional trips into worry, it’s easy to forget the road we have travelled, which, to be honest, has been long and, certainly in the early days, arduous.

So, in order to avoid this post becoming a country mile (something it is already threatening to be), I am going to get to the point, and tell you some of things I learned about food and feeding that, you never know, might help someone, should I ever figure out how to publicise correctly.

It starts early.
After you have given birth to baby, the very next thing, once you have got over the relief of getting it out and surviving to tell the tale, is to feed it. There is immense pressure to get started. Now, a lot of the time, this goes swimmingly. If you have made up your mind before the day how you are going to feed your baby and, especially if you are breastfeeding, you get a baby who seems to know what to do, Bob is indeed your uncle.

If, however, as happens to many, you don’t, and you get one that refuses to stick to the plan, you have instantly introduced a level of anxiety that is hard to overcome. Not all babies breastfeed easily, special needs or none. If you are determined to do it you are going to have to dig down into more physical reserves than you thought you had – and you need the support of your partner.

It is entirely bound up with your emotions.
Feeding your baby, and keeping it alive while doing so is a kind of fundamental act, and the inability to feed them can and does impact on your sense of self. When you see someone else doing it differently, it can feel like an attack – even years down the line, when grandchildren come to call.

Breastfeeding a baby with Down’s syndrome is possible. Challenging, but possible. I know, because I did it.

Everyone has an opinion.
Everyone. Every single person in the entire universe has an opinion on it. It’s almost as if feeding your baby is a public, rather than private act.  When your child has a problem with eating – of whatever sort – and you sit at the table with them and a gathering, everyone seems to think that it helps for them to comment on it or attempt to get involved, uninvited. It doesn’t. It just magnifies it and makes them, and you, feel worse. Funnily enough, Sam made his first forays into feeding himself ‘proper’ food when we were out at a pub lunch, too busy chatting and watching the world go by to notice what he was doing. Once he got going, there was no stopping the boy.

They are ready for solid food at different times.
Is the advice still six months? Or is it four, or three? Or even two? It’s difficult, especially when it is your first baby, to know what to do. Advice and guidance is plentiful, and sometimes contradictory, and that’s before the family gets involved and start making suggestions you aren’t sure are jokes.

For what it’s worth, three babies down the line, each different in their needs, the only thing I feel confident in telling you is that by the time they are reaching out, grabbing your dinner off your plate and stuffing it in their tiny mouths you can pretty much rest assured that they are ready for solid food.

Not every baby finds solid food an easy thing.
Ok, so this is where the specialist knowledge and experience kicks in. Down’s syndrome comes along with low muscle tone (I think I am right in making that blanket observation – I expect there are some babies who do not, so if that’s you or yours, apologies), and this includes the muscles of the mouth. If your baby is bottle fed, they won’t necessarily have exercised those muscles enough to make manipulating solid food and attempting to chew it easy. And that’s before you get to the delayed appearance of teeth.

The smoothness of jarred food can be a great way to start, but the next stage ones can be tricky, as the lumps tend to come along in the shape of centimetre cubes. Typical babies find this tricky too. Getting food to the consistency that your baby can handle is a process of trial and error, and I can recommend a hand blender in support of this pursuit.

If your baby/toddler/young person is having difficulty with solid food, and chewing is a problem, look out for melt-in-the-mouth foods that they can put in and mush away to their little heart’s content, without having to worry. Skips are quite good, as are Quavers or banana.

Rescuing a choking baby is frightening.
It happens. It’s a good idea, when you are starting out with solid food, to find out what to do if you find yourself in this position. If you do, it is important that you act quickly.

Some babies and children have difficulty with liquids too.
Controlling the flow of very runny fluids can be difficult for some young children – despite what you might think, based on the idea that they start off on a liquid-only diet.  Drinking water from a cup/beaker is an entirely different experience and skill.

You can help them get the hang of it by slowing down the flow in a couple of ways. You can hit the shops and invest in every single beaker/sippy cup there is (this is a lot of fun and can also be extended to sandwich and snack boxes with slidy lids that encourage fine motor control) and/or (once you have your sippy cup of choice) you can thicken the fluid a bit.

There are a few ways you can do this; you can get thickeners from the doctor, you can use jelly or yoghurt or you can go the fruit smoothie way which also has the added benefit of keeping everyone nice and regular. Drinking straws are great fun and don’t get blocked by the inevitable chunks of fruit; I found some lids with a hole for the straw.  A brilliant investment that saved me a fortune in carpets.

It is important to keep going with fluids as constipation is very painful.

Even if your child is stuck on purées you can still offer finger food at meal times.
Sharing meal times and enjoying food together is kind of central, culturally speaking, to the family. Eating at a table, together, is the focus for so much learning that goes beyond food and feeding.

I have to admit that I do not especially enjoy messy play at home. It’s just too much…mess. So, food and feeding became a sensory cornucopia. I even have the odd photo hanging around somewhere of baby Sam covered from head to toe in some sort of foodstuff or other.  And then there is the art of conversation, of taking turns, of serving each other and using good manners. These things are learned at the table, as part of the meal, whether you are eating or not.

They feel as emotional about it as we do
Choking is frightening. Being unable to control a drink in your mouth is alarming. There are many early experiences that can mean that a child or young person develops a fear where food is concerned. Allaying that fear means that the adults in their lives need to control theirs. Whether this means going easy on the baby wipes the moment their fingers get a little bit sticky or reigning in on the desire to leap to their side the moment they put something that has caused a problem before anywhere near their lips, that is what you need to do. Being afraid of food can affect a million other aspects of the life of a child, including their ability to get on well at school.

As with so much to do with learning, putting our own feelings to one side in order to benefit their progress is the name of the game, so that everyone can get to where we want them to be.

Tired

Last Saturday it was Sam’s birthday party.  Sixteen years old.  How did we get here? I can hardly believe it.  Gone is my baby, the small innocent boy, and in his place is a fledgling man.  He flexes his muscles, and chafes at a lack of independence. Detentions make no difference to his truculence in school.  He is not tall, although his voice has deepened and his cheeks are rough. When I observe the sons of my friends my heart skips a beat at the height and breadth he does not share. Nevertheless, my boy is growing up, and I am proud.

We took him and a group of his friends ten pin bowling. After a game in which there was much laughter and mutual helping and taking turns (no adult presence required), they shared a meal, and waited politely for cake and candles (it takes longer than you think to light sixteen of them, and a fair few puffs to blow them out). I can’t quite believe that this will be his last school-friend celebration, because in the summer, he leaves.  He and his friends will be scattered to the four winds.

It’s one of the reasons I am still throwing him a birthday party. His younger siblings have reached the stage where, other than the cake-and-candles and the gifts they aren’t really bothered (or, they haven’t made a fuss, anyway).  Certainly by my sixteenth, where I went for a walk around the village and called in on a neighbour for a chat, birthday parties were long a thing of the past, but, as ever where Sam is concerned, his birthday, as well as him, offers me an opportunity.

One of the things that happens when your child goes to secondary school is that you lose touch with the parents of their friends.  For a long time, we were bound close, forged together in the crucible of the toddler group, the playgroup and the nursery; the cold hours waiting in playgrounds, washed with three o’clock rain. Whether this losing touch is peculiar to special schools, I don’t know, as even though he still needs delivering and fetching, I never have time to wait and chat; the vast majority of young people leave with a driver. For me, his party gives me the chance to connect with my peers, to find out how everyone is getting on.

In a way, it’s restful. Despite the noise and lights, a sensory nightmare that everyone takes in their stride, meeting up with people who have been where you have been, who have walked by your side, even if at a distance, is a relief.  At the last one I chatted with another mother about Sally Phillips’ documentary, a cultural event that continues to ripple over my community.  Another time, a group of us talked about school, and how to fill in the multitude of forms that beset you when your child has a disability; the strangeness of finding yourself an appointee, together with a visit from the Official Checking Lady.

And last week, the conversation turned to the longer term. It’s not a place I think of much.  We are very much a right here, right now, cross bridges when we get to them kind of family, and it works for us. But the bridges are coming up alarmingly fast.  Sam, at 16, is a young man confidently hurtling towards an uncertain adulthood.  With all the talk about the cuts in spending to schools, right at the point when he is leaving and heading towards the realms of the college, is there enough money to support him there either?

We talked about the possibility of starting our own business, the sort where we could provide our sons with both meaningful and safe employment and training. We discussed Team Domenica and Foxes Academy.

I think about these initiatives and I feel proud and inspired. I think how great they are, how fabulous it is that there are people who are committed to making the future less frightening for families like ours. And then I think about how many parents are involved in setting them up, and I just feel tired.

Sometimes I don’t feel equal to the task.