She came into our home like a breath of fresh air. Pragmatic, idealistic, and keen to help. All my worries about the health school disappeared as she explained the way she would work: she wanted to build my son's trust, she would visit him twice a week and leave work to be completed in between, she would pitch the work not to his intellectual level (high) but to his anxiety (superhigh, meaning his confidence needed to be built up more than he needed to be stretched). She was in short like Father Christmas. I rather expected sleighbells, and a ho-ho-ho.
But then a shadow crossed her face, as we chatted about the work I had done with my son. I explained how we'd started working together when he couldn't move his legs or sometimes even his hands, and spending days lying on the sofa doing nothing except watching telly. "But this must have been really hard for you." Well, yes, it was. It's better now he is improving, you have no idea how much easier it is to educate a child who can pick up a pencil without complaining. She picked up the exercisebook filled with laborious sentences about Pokemon. (This is a painful experience for us both. I am not sure whose aversion is the strongest, his to writing or mine to those blasted Pokemon cards I am having to tolerate in the house). "OK, you have this book. But what else? I mean, where are your resources?"
And this was a sticky question, because if you're talking books or teaching materials, well, actually, I haven't had any. There is of course lots of useful stuff out there on the net, and I have hunted down those sites that offer limited free access with the single-minded determination of a labrador after food. Then there's the library, of course, which is great. But there really hasn't been the option of buying lots of courses, books, memberships to websites, etc, or signing my boys up to hundreds of snazzy daytime classes to get them "out of the house" or "socialising."
And do you know what? I'm rather glad.
I didn't feel glad, when the health school teacher asked me. I felt sort of awkward, and defensive, and shabby. I looked at our homemade efforts. The cardboard geology board game, and the cardboard tangram, and the homemade flash cards. Suddenly they didn't seem inventive or ingenious, they just looked, well, dull and brown and rather flimsy. They wouldn't last long. They didn't look attractive. But they were the best we could do, responsibly, for now. I thought of the conversation we'd had with our family budgeter. (We're not poor or in debt or financial trouble, but like most families with a stay-at-home parent we have to be careful, and it made sense to take up the offer of budgeting advice when it came from our GP practice). I'd explained that we needed to adjust the family budget to include spending on educational resources. She nodded supportively - education is a sensible need, it is not as if we were wanting extra dosh for gambling. So she bent her head, and looked down at our outgoings and incomings, and after a moment she beamed as if she had very good news, and announced that she thought it would be safe to spend an extra ten dollars per fortnight. Five pounds, for you Englishers. I'll be honest, at the time my heart sank. That's not an awful lot of stationary, website subscriptions, homeschooling classes or books. Especially in NZ where the price of books makes diamonds look like a good deal. (The International Adult Literacy Survey shows that one in five NZ adults operates at a high level of literacy. I guess the other four had parents who knew the cost of books. "Son, you put that down right NOW and turn the telly on, you want to bankrupt us with your reading habit?"). So I felt bad again when the health school teacher asked me, because it was a sore spot, I felt guilty that I wasn't spending far more, supplying them with crammed bookcases and an equally crammed extra-curricular timetable.
But now I have had time to think about it, I'm actually rather glad that we've started out this way. If we homeschool medium-term, it won't be a problem. There is a government grant which will provide for precisely that, good books and/or a couple of extra-curricular activities to season the weeks at home. And in the interim, well, I kind of think back to the days when I studied theory of drama, and was very taken as a young woman with Grotowski. A Polish bloke who had an experimental notion called Poor Theatre. It didn't mean Poor as in no money, of course. It was a wholly subsidised artistic program in which Grotowski and his actors were funded to experiment by the Polish government. But it did mean that they systematically stripped away all the extras from the theatrical experience, the building and the make-up and the costumes and the script...until they reached a point where they could go no further, because the one thing they could not take away from theatre was the actor's encounter with the spectator.
Now I rather think that there is little point in homeschooling if you are going to bust your budget or exhaust your energies trying to replicate all the advantages of school. My boys can learn that homeschool means not going to school when you are traumatised or in pain, but they also need to learn that it may mean working on a porridge-sticky table because Mum hasn't had a chance to clean that morning. (Possibly because she has spent the relevant time messing around on Facebook). And it does not mean a classroom full of gaudy enticing resources, or access to piles of expensive computer programs. It means doing what's possible, with what's possible, in the space and time that is possible. With me there to help them, if they want and need it. Because you see, the one thing I don't think you can do without in childhood education is someone there with you, accompanying, guiding, mentoring, supporting, empowering, strewing, introducing. You can call it many things but basically it is teaching. The encounter between the learner and the teaching material is unavoidable. To produce/supply/explain that material, you need an adult. That adult is me, and they need to encounter what I bring them, just like the spectator needs to encounter the actor for there to be a moment of theatre. So, if I'm teaching and they are learning, then that's education, and everything else is icing on the cake, means to an end. Sure, it's lovely when Father Christmas turns up, with offers of help and resources. Ho ho ho. But Christmas doesn't last all year, and I have no idea how long the health school will be available to fund us. We need to focus on the basics. Teacher and student. That's it. That's what you need. Everything else is stocking-filler.
Which is good because my middle son has completely fallen apart this week. He seems to have lost his social confidence overnight. He had a bad experience at school last week and somehow it has knocked him for six. He's like a pre-verbal toddler again, locked in his little shell. He doesn't need resources. The textbooks and extra-curricular activities will keep. But he does need some therapeutic input, someone to encourage him back into the happy sociable place he was a few months ago. In short, he needs me, my time and attention. And that's something that can be supplied in abundance.
As long as it doesn't impact on my Facebook habit, of course.
Sunday, June 16, 2013
Sunday, June 2, 2013
Probability problems
Probabilities. We have been covering that at home. Not much, not in a structured way. But I noticed my eldest son cursing that he could not get that right on his Mathletics game, and wandered over to help. (I also hyperventilated a little, because I am nervous of maths like you are nervous of poisonous snakes under your pillow).
My standards have been set extremely low for maths. I have checked the national standards that he should be meeting at the end of this year. Every time I showed him a problem from the list, he was able to solve it instantaneously. Oh, OK, I thought; I don't have to worry.
But I do, it turns out, because he now hates maths. Not, it seems, the maths we have done at home. We've taught him the probabilities he was struggling with. It took about five seconds. Then in another five seconds we explained that that was the childish way to do probabilities, and that there was a mathematical language for this kind of thing. And that you can use percentages, and that you can develop the idea of probabilities to a higher level, probably, than he would encounter for a few years at school. All this took an hour or so, not because my husband and I are incredible teachers but because he is a bright kid and there is a natural progression there. So far, so good.
But institutional maths is a different story. He's fed up with it. On one of his infrequent visits to school he discovered that there is a kid in the class who has done more worksheets than he has this year. In vain do I point out that this kid has not spent vast tracts of time sick at home,or in hospital. He gets that, he agrees, but he then tells me that he just doesn't want to do maths the school way, he doesn't like the worksheets any more. Right. Sigh. I start to regret having invited him to open up to me with his true feelings about school. He also hates writing. Well, I knew that already. I thought I had the solution for now. I explained to him about how he would need to write in exams when he was older, and he didn't need to be beautifully tidy but it needed to be fast and legible. I point out that when he came out from England he was already doing nice joined-up writing, so why is he now insisting on capitals? "But the other kids make fun of me when I do joined up writing, they say stop doing your fancy writing," he complains. And he insists on doing his dictation in capitals. I let him. The point of now is to work out what's going on, not try to fix everything overnight. But it's tempting to shout, and tell him to pull himself together.
Probabilities. The probability was that it was a lack of confidence, that he wasn't a very neat writer. But it turns out to be the opposite: it is that his friends at school thought he was too good at it, and as kids do decided to bring him down to their level. The perennial high-achievers' problem. I am relieved, in a way, because this problem sounds as if it might be easier to fix. But I am irritated, too: is there anything about his education that is actually going well, where he is working to his own satisfaction? No, it turns out, not really. He's a bundle of nerves, an eight-year-old worry ball. He thinks about probabilities, all the time, in a muddled sort of way: if I do well at this people may laugh at me, so let's play it safe and do it badly. I am not the best in the class at this anymore, am I the worst? He could use some probability-type thinking about his pain, too: to think about what may or may not may not happen.
So I bit the bullet, the way I have been desperately trying to avoid for the last couple of months, and said casually to my husband that I thought we ought to homeschool both boys for six months, until one was toilet-trained and the other in less pain.
I waited for the obligatory family argument (you know the one about money, and mollycoddling the boys,and not teaching them about the real world, and weird homeschooled kids).But fortunately my husband is a sensible man, and none of that happened.
After three days of thinking it over he said to me that he didn't think homeschooling for six months was actively dangerous. I took that as wholehearted approval. (Like I said, I have low standards).
Then we got a mysterious phonecall from the paediatric department of the hospital. A paediatrician who had never met our son had decided that she would like to sign a form admitting him to correspondence (hospital) school. Since we'd been trying to arrange this for months, this was good. I go to talk to school and we agree that this is a good solution - he can study their curriculum at home, I can supervise but it will give me a bit of time to focus on the huge educational problem that is my middle son. Who is clearly missing large tracts of what is said to him, and is clearly struggling with aural/auditory processing problems: who is slow to answer direct questions but who always knows the answers if you give him space and time. (I rather suspect this is behind many of his apparent social problems). Who is delightfully compliant, unless he feels under pressure, when he will refuse to comply or give the wrong answer on purpose. Who is doing well at reading and sums - because they are visual - but is struggling at the more abstract level of classroom language understanding, to the extent that he currently thinks his class is going on a trip to Antarctica. Yes, this boy needs some time and space and intensive engagement. It isn't just about the toilet training. He guesses the answer to a lot of verbal questions, relying on his understanding of probabilities to surmount that he can't understand. Sometimes his guesses are obviously, comically wrong - like Antarctica. Or the time when we went to the planetarium and he genuinely believed he had been in space. More often, I suspect, he guesses well enough that he gets by. But he won't for long. I have no idea what I am going to do about all this, but I know I can't leave him vaguely misunderstanding and floundering in the classroom.
So it is correspondence school for my eldest, and homemade curriculum for his brother. In which I guess I shall talk extremely slowly and clearly and spend lots of time waiting for his replies. I hope this is going to work out. I can already see a few problems ahead. The equivalent for my eldest son of finding those sneaky pillow-dwelling snakes. For one, the probability is extremely high that correspondence school will insist on seeing some writing, and will also be teaching maths by supplying him with a set of worksheets.
My standards have been set extremely low for maths. I have checked the national standards that he should be meeting at the end of this year. Every time I showed him a problem from the list, he was able to solve it instantaneously. Oh, OK, I thought; I don't have to worry.
But I do, it turns out, because he now hates maths. Not, it seems, the maths we have done at home. We've taught him the probabilities he was struggling with. It took about five seconds. Then in another five seconds we explained that that was the childish way to do probabilities, and that there was a mathematical language for this kind of thing. And that you can use percentages, and that you can develop the idea of probabilities to a higher level, probably, than he would encounter for a few years at school. All this took an hour or so, not because my husband and I are incredible teachers but because he is a bright kid and there is a natural progression there. So far, so good.
But institutional maths is a different story. He's fed up with it. On one of his infrequent visits to school he discovered that there is a kid in the class who has done more worksheets than he has this year. In vain do I point out that this kid has not spent vast tracts of time sick at home,or in hospital. He gets that, he agrees, but he then tells me that he just doesn't want to do maths the school way, he doesn't like the worksheets any more. Right. Sigh. I start to regret having invited him to open up to me with his true feelings about school. He also hates writing. Well, I knew that already. I thought I had the solution for now. I explained to him about how he would need to write in exams when he was older, and he didn't need to be beautifully tidy but it needed to be fast and legible. I point out that when he came out from England he was already doing nice joined-up writing, so why is he now insisting on capitals? "But the other kids make fun of me when I do joined up writing, they say stop doing your fancy writing," he complains. And he insists on doing his dictation in capitals. I let him. The point of now is to work out what's going on, not try to fix everything overnight. But it's tempting to shout, and tell him to pull himself together.
Probabilities. The probability was that it was a lack of confidence, that he wasn't a very neat writer. But it turns out to be the opposite: it is that his friends at school thought he was too good at it, and as kids do decided to bring him down to their level. The perennial high-achievers' problem. I am relieved, in a way, because this problem sounds as if it might be easier to fix. But I am irritated, too: is there anything about his education that is actually going well, where he is working to his own satisfaction? No, it turns out, not really. He's a bundle of nerves, an eight-year-old worry ball. He thinks about probabilities, all the time, in a muddled sort of way: if I do well at this people may laugh at me, so let's play it safe and do it badly. I am not the best in the class at this anymore, am I the worst? He could use some probability-type thinking about his pain, too: to think about what may or may not may not happen.
So I bit the bullet, the way I have been desperately trying to avoid for the last couple of months, and said casually to my husband that I thought we ought to homeschool both boys for six months, until one was toilet-trained and the other in less pain.
I waited for the obligatory family argument (you know the one about money, and mollycoddling the boys,and not teaching them about the real world, and weird homeschooled kids).But fortunately my husband is a sensible man, and none of that happened.
After three days of thinking it over he said to me that he didn't think homeschooling for six months was actively dangerous. I took that as wholehearted approval. (Like I said, I have low standards).
Then we got a mysterious phonecall from the paediatric department of the hospital. A paediatrician who had never met our son had decided that she would like to sign a form admitting him to correspondence (hospital) school. Since we'd been trying to arrange this for months, this was good. I go to talk to school and we agree that this is a good solution - he can study their curriculum at home, I can supervise but it will give me a bit of time to focus on the huge educational problem that is my middle son. Who is clearly missing large tracts of what is said to him, and is clearly struggling with aural/auditory processing problems: who is slow to answer direct questions but who always knows the answers if you give him space and time. (I rather suspect this is behind many of his apparent social problems). Who is delightfully compliant, unless he feels under pressure, when he will refuse to comply or give the wrong answer on purpose. Who is doing well at reading and sums - because they are visual - but is struggling at the more abstract level of classroom language understanding, to the extent that he currently thinks his class is going on a trip to Antarctica. Yes, this boy needs some time and space and intensive engagement. It isn't just about the toilet training. He guesses the answer to a lot of verbal questions, relying on his understanding of probabilities to surmount that he can't understand. Sometimes his guesses are obviously, comically wrong - like Antarctica. Or the time when we went to the planetarium and he genuinely believed he had been in space. More often, I suspect, he guesses well enough that he gets by. But he won't for long. I have no idea what I am going to do about all this, but I know I can't leave him vaguely misunderstanding and floundering in the classroom.
So it is correspondence school for my eldest, and homemade curriculum for his brother. In which I guess I shall talk extremely slowly and clearly and spend lots of time waiting for his replies. I hope this is going to work out. I can already see a few problems ahead. The equivalent for my eldest son of finding those sneaky pillow-dwelling snakes. For one, the probability is extremely high that correspondence school will insist on seeing some writing, and will also be teaching maths by supplying him with a set of worksheets.
Monday, May 27, 2013
The Child With No Ideas
The wonderful SecularHomeSchool forum of which I am now a member (yeah, I know, I am neither strictly speaking secular or strictly speaking home-schooling, they are clearly as tolerant as I am scatty) recommended me a book about literacy through art. At bedtime I started reading, and then I couldn't sleep because it made me too excited. So today I was overtired and nervous that these great ideas wouldn't work. A bundle of nervous tension. Not great.
I love creative writing, can't get enough of it. My son is the opposite. He can't stand writing of any kind. He'll do it, under suffrance, at school, like most boys. He will write the minimum he can get away with. In fact, he rarely meets that benchmark. His teacher suggested I use his time off school to work on his writing. I have been hesitant, because I applaud the aim but had no idea how to work on it: I mean, I can insist he sits and writes for twenty minutes but he complains he has no ideas, even if I show him a photograph and say "Describe what you can see."
Clearly something more was going on. Today I took the scribble-drawings he'd produced last week with his brother and reminded him gently of the story he had suggested. He was reluctant and grumpy - I am learning that for the first five minutes of any activity he will be surly and unco-operative, and it will take a couple of reminders that I DO actually need him to do some work now before interest and enthusiasm kick in. The reminders were delivered, which usually does the trick.
But this morning there was no rush of enjoyment The more I showed him my plan, the more anxious and wound-up he got. I explained that we were going to list some of the features of the picture in a chart - "Clouds" "Trees" etc - and that then we would think of words to describe them for our writing.
At the word "writing," he shot out of his seat. "No Mummy I am NOT GOOD AT WRITING! It is boring!"
I thought of the breathless tone of the book about literacy and art. A chart like this was supposed to unlock a child's creativity instantly, turn them into a combination of Shakespeare and Rembrandt. Clearly book had some missing steps. Or, clearly, my son had some massive issues about writing. I fought back the urge to tell him to shut up and do what he was told.
"Well, you see," I said feebly, feeling like a maiden aunt confronting an armed burglar, "the thing is, this is the exercise, we have done these lovely pictures and now we are going to write the story to accompany them." He looked at me as if I was the armed burglar.
"But Mum," he exploded, "I am the illustrator."
Of course he was. It made perfect sense. Writers and illustrators do different jobs. The bloody book didn't include a way to get around this. But at least it was conversation rather than refusal. I clutched at the straw that whistled past me in the wind.
"OK, yes, you are the illustrator. And I am the writer." I gave up all expectations of written work for this lesson. "But an illustrator needs to help the writer understand his pictures."
We looked at the picture together. "But I need to draw trees."
"OK," I said, thinking how badly this was going. You are not SUPPOSED to still be drawing, son, we are SUPPOSED to be on the literacy part of the lesson now. He drew some more trees. They looked weird, clunky and odd. Then he said casually "Can you put on that chart that the trees are people-like?"
I held my breath. "Yes, I can do that." Should I be casual or tell him that that was amazing?
I chose the latter, which seemed to please him. He drew a few more details, and we worked on the list. Then he told me the opening of his story, which I wrote down as he asked me. The words are entirely his, I just prompted him occasionally by reminding him what he'd put on the chart. He chose a title. We just worked on the opening page, which we agreed should be atmospheric, before the story proper started.
The Little Patterned House
Long ago there was a little patterned house. And next to the house was an archery contest at the palace fair, and also a forest of people-like trees and grass standing still as statues because the wind can't reach them in the forest.
Smoke poisoned the air from the chimney of the little patterned house. But the wind blew it far away. Each colour of the rainbow shone brighter than the sun and did fancy loop-the-loops and other fancy tricks, when the wind blew. The clouds did loops and loops and blocked some of the rainbow, and the sun made the rainbow bright. The wind howled at night like a wolf howling to the moon.
Not bad for a child with no ideas.
Oddly, as I look back on the morning I am more interested in the moment of resistance, and in the changing tack that had to happen, in order to accomplish the goal. That's so important for a kid with "ishoos" and so impossible for a teacher, whose job is to herd thirty children in the same direction at once. I think this is the one advantage of educating at home. You don't have the degree in pedagogy or the institutional framework or the resources or the classroom support or the teaching experience. You are sailing a very small boat across a very large ocean, whilst everyone else is on an ocean-liner. Their voyage is far steadier and more luxuriously equipped than yours. Your only advantage is that you can react quickly, move away from danger fast. And, of course, you can keep close tabs on your passengers. It's all too easy to lose someone overboard from a shipping liner and simply sail on.
Do I want to sail across the Atlantic single-handed? I'm not sure. One of the more irritating aspects of the home-school "culture" is the single-minded insistence that YOU CAN DO IT, yes, YOU, yes random parent who is surfing the internet wondering about his or her child's wellbeing. It's a bit like the Kitchener posters in World War One, insisting that the Hun will only be defeated if you personally, Sam Jones in Warwickshire, lay down your plough and hurry off to the front. It brings out my inner rebel. I feel like writing back to these enthusiasts: "wow really? You're sure I can homeschool? That's amazing, I am so glad of your encouragement, you see I thought my crack habit and sideline in prostitution might be a stumbling-block." Just because you CAN do something, isn't necessarily a reason that you should. I feel a bit like Sam Jones in Warwickshire. It's all very well being noble and laying down my life to educate my children singlehandedly, but actually there's quite a few fields that need ploughing, the boys have developmental and medical needs aplenty, and will that be neglected if I run off to the front of home-schooling?
It's a toughie though, because I am realising that I am actually OK at this. From the last couple of months' experience, I am now pretty sure that yes, if push came to shove, I could homeschool adequately. With the gym and me-time a vague but alluring memory, I am still hoping it won't be necessary to give up my entire life for my child: but today's lesson taught me very clearly quite how much could be accomplished with intensive one-to-one tailormade tuition, that just can't be done in a school. I guess if I could wave a magic wand right now it would involve my children being whisked off to a fabulous school (exactly like the one they currently attend, in fact) where they would spend just enough time there doing reading writing and sums to make me feel that I didn't have to worry about the basics. Then I would have them at home the rest of the week, providing tailormade tuition for their strengths and weaknesses and enjoying their company.
My fantasy also involves a fairy godmother who takes care of the washing cooking and cleaning so that I can spend my time preparing lessons. (And possibly a male masseur, who presumably comes with a magic wand of his own).
I can't tell what will actually happen, be desirable and/or possible. But I know I am excited about my children's learning - and about being involved in it - in a way I have never felt before. I have a sense of fun about it all, a feeling that we are all embarking on a tremendous adventure. I am not quite sure what the route is, but that will emerge.
Because at the end of the day I just want this child who is so regularly crippled by pain to have the sense of rainbows looping the loop in his childhood, colours shining brighter than the sun. At the moment he thinks that the little patterned house might have a family rather like ours in it. Let's hope we can keep the poison smoke of pain blowing away in the wind. I want him to be filled with the magic of people-like trees, to hear in his imagination the sounds of wolves and winds howling to the moon. The more of that, the less time spent begging for painkiller. So whatever makes that happen is the right choice, whether it be at school or at home.
I love creative writing, can't get enough of it. My son is the opposite. He can't stand writing of any kind. He'll do it, under suffrance, at school, like most boys. He will write the minimum he can get away with. In fact, he rarely meets that benchmark. His teacher suggested I use his time off school to work on his writing. I have been hesitant, because I applaud the aim but had no idea how to work on it: I mean, I can insist he sits and writes for twenty minutes but he complains he has no ideas, even if I show him a photograph and say "Describe what you can see."
Clearly something more was going on. Today I took the scribble-drawings he'd produced last week with his brother and reminded him gently of the story he had suggested. He was reluctant and grumpy - I am learning that for the first five minutes of any activity he will be surly and unco-operative, and it will take a couple of reminders that I DO actually need him to do some work now before interest and enthusiasm kick in. The reminders were delivered, which usually does the trick.
But this morning there was no rush of enjoyment The more I showed him my plan, the more anxious and wound-up he got. I explained that we were going to list some of the features of the picture in a chart - "Clouds" "Trees" etc - and that then we would think of words to describe them for our writing.
At the word "writing," he shot out of his seat. "No Mummy I am NOT GOOD AT WRITING! It is boring!"
I thought of the breathless tone of the book about literacy and art. A chart like this was supposed to unlock a child's creativity instantly, turn them into a combination of Shakespeare and Rembrandt. Clearly book had some missing steps. Or, clearly, my son had some massive issues about writing. I fought back the urge to tell him to shut up and do what he was told.
"Well, you see," I said feebly, feeling like a maiden aunt confronting an armed burglar, "the thing is, this is the exercise, we have done these lovely pictures and now we are going to write the story to accompany them." He looked at me as if I was the armed burglar.
"But Mum," he exploded, "I am the illustrator."
Of course he was. It made perfect sense. Writers and illustrators do different jobs. The bloody book didn't include a way to get around this. But at least it was conversation rather than refusal. I clutched at the straw that whistled past me in the wind.
"OK, yes, you are the illustrator. And I am the writer." I gave up all expectations of written work for this lesson. "But an illustrator needs to help the writer understand his pictures."
We looked at the picture together. "But I need to draw trees."
"OK," I said, thinking how badly this was going. You are not SUPPOSED to still be drawing, son, we are SUPPOSED to be on the literacy part of the lesson now. He drew some more trees. They looked weird, clunky and odd. Then he said casually "Can you put on that chart that the trees are people-like?"
I held my breath. "Yes, I can do that." Should I be casual or tell him that that was amazing?
I chose the latter, which seemed to please him. He drew a few more details, and we worked on the list. Then he told me the opening of his story, which I wrote down as he asked me. The words are entirely his, I just prompted him occasionally by reminding him what he'd put on the chart. He chose a title. We just worked on the opening page, which we agreed should be atmospheric, before the story proper started.
The Little Patterned House
Long ago there was a little patterned house. And next to the house was an archery contest at the palace fair, and also a forest of people-like trees and grass standing still as statues because the wind can't reach them in the forest.
Smoke poisoned the air from the chimney of the little patterned house. But the wind blew it far away. Each colour of the rainbow shone brighter than the sun and did fancy loop-the-loops and other fancy tricks, when the wind blew. The clouds did loops and loops and blocked some of the rainbow, and the sun made the rainbow bright. The wind howled at night like a wolf howling to the moon.
Not bad for a child with no ideas.
Oddly, as I look back on the morning I am more interested in the moment of resistance, and in the changing tack that had to happen, in order to accomplish the goal. That's so important for a kid with "ishoos" and so impossible for a teacher, whose job is to herd thirty children in the same direction at once. I think this is the one advantage of educating at home. You don't have the degree in pedagogy or the institutional framework or the resources or the classroom support or the teaching experience. You are sailing a very small boat across a very large ocean, whilst everyone else is on an ocean-liner. Their voyage is far steadier and more luxuriously equipped than yours. Your only advantage is that you can react quickly, move away from danger fast. And, of course, you can keep close tabs on your passengers. It's all too easy to lose someone overboard from a shipping liner and simply sail on.
Do I want to sail across the Atlantic single-handed? I'm not sure. One of the more irritating aspects of the home-school "culture" is the single-minded insistence that YOU CAN DO IT, yes, YOU, yes random parent who is surfing the internet wondering about his or her child's wellbeing. It's a bit like the Kitchener posters in World War One, insisting that the Hun will only be defeated if you personally, Sam Jones in Warwickshire, lay down your plough and hurry off to the front. It brings out my inner rebel. I feel like writing back to these enthusiasts: "wow really? You're sure I can homeschool? That's amazing, I am so glad of your encouragement, you see I thought my crack habit and sideline in prostitution might be a stumbling-block." Just because you CAN do something, isn't necessarily a reason that you should. I feel a bit like Sam Jones in Warwickshire. It's all very well being noble and laying down my life to educate my children singlehandedly, but actually there's quite a few fields that need ploughing, the boys have developmental and medical needs aplenty, and will that be neglected if I run off to the front of home-schooling?
It's a toughie though, because I am realising that I am actually OK at this. From the last couple of months' experience, I am now pretty sure that yes, if push came to shove, I could homeschool adequately. With the gym and me-time a vague but alluring memory, I am still hoping it won't be necessary to give up my entire life for my child: but today's lesson taught me very clearly quite how much could be accomplished with intensive one-to-one tailormade tuition, that just can't be done in a school. I guess if I could wave a magic wand right now it would involve my children being whisked off to a fabulous school (exactly like the one they currently attend, in fact) where they would spend just enough time there doing reading writing and sums to make me feel that I didn't have to worry about the basics. Then I would have them at home the rest of the week, providing tailormade tuition for their strengths and weaknesses and enjoying their company.
My fantasy also involves a fairy godmother who takes care of the washing cooking and cleaning so that I can spend my time preparing lessons. (And possibly a male masseur, who presumably comes with a magic wand of his own).
I can't tell what will actually happen, be desirable and/or possible. But I know I am excited about my children's learning - and about being involved in it - in a way I have never felt before. I have a sense of fun about it all, a feeling that we are all embarking on a tremendous adventure. I am not quite sure what the route is, but that will emerge.
Because at the end of the day I just want this child who is so regularly crippled by pain to have the sense of rainbows looping the loop in his childhood, colours shining brighter than the sun. At the moment he thinks that the little patterned house might have a family rather like ours in it. Let's hope we can keep the poison smoke of pain blowing away in the wind. I want him to be filled with the magic of people-like trees, to hear in his imagination the sounds of wolves and winds howling to the moon. The more of that, the less time spent begging for painkiller. So whatever makes that happen is the right choice, whether it be at school or at home.
Friday, May 24, 2013
A page full of scribbles
To begin with, I actually thought my middle son was ill. He was so unbelievably distraught about something that had happened at school that there was no way I could get him dressed or out of the door. So I assumed today was a sick day and phoned the school office. This is probably getting our family closer to our award for Worst Attenders of 2013. I wonder if we get a trophy?
After half an hour or so it was clear that it was just panic that had gripped him. I sat him down and explained that his big brother was doing some work at home today, and that if he wasn't going to school we would find him some work to do too. Then I had a little panic attack of my own.
You see, the reason I thought that home-school time was working so well for me and my eldest was that it was exactly that, time for me and my eldest to bond over something interesting. My eldest is really good one-to-one. He revels in the adult time and in the feeling of being treated as an equal. Moreover, he and his middle brother don't really get on that well. They don't get on badly, but they don't play together much. They seem to have totally different interests and glide past each other on a day-to-day basis, sharing space and family life without actually being playmates. Moreover, both can find each other intensely annoying. I envisaged the next few hours as being a three-way tug-of-war with lots of emotional rope burn and without the element of fun.
But in the event, it was OK. No, more than OK, it was actually pretty amazing. First and to my relief, middle son thought school at home would be just fine, and the boys were charmed by the idea of working together. Fortunately, we have two computers, so I set one up on the laptop and the other on our ancient desktop with the spelling site. They worked at different levels for twenty minutes and then we tested them both. Eldest was helpful in supporting his little brother, which I expected. What I didn't expect was that when it came time to test the eldest, little brother both wanted to try to read the words out loud for him, and then wanted to know what all these strange new difficult words meant. For a kid with speech delay, this was good stuff.
I gave myself, erm I mean them, a short break. Then we gathered around the table for our second lesson. Fortunately, I had something I'd planned for a while that was actually easier with three than two. I am trying to get my eldest to loosen his imagination a bit, instead of being gripped with fear and stress every time he picks up a pen to do art or writing. So all three of us covered a piece of paper with shapeless scribbles. Then we swapped our sheets around and took turns in guessing/inventing what imaginary pictures were represented by the scribbles. We finished them off, adding neat leaves to the scribble-tree, a sun coming out from the scribble-cloud. Then we talked about what story might be happening in the pictures.
I was pretty sure they would both be able to manage this task technically. But what I wasn't sure of - and that was a pleasant surprise - was the fact they didn't just work on the same task together, they supported and encouraged each other. I am used to seeing them completely ignore each other's interest and work. This time they were chatting and laughing together as they worked. They looked like two brothers, rather than two boys who happen to live in the same house.
Lunchtime came. At the moment we are experimenting with only sending my eldest to school in the afternoons. I got the boys ready, picked up their bags, encouraged THEM to pick them up, reassured them that they had already had enough to eat and didn't need an afternoon snack, took them to the door, realised they didn't have shoes on, found their shoes, persuaded them both that yes they DID need them, got halfway up the drive...and hit a wall of rain that was so heavy I could scarcely see them.
"I'm sore!" shouted my eldest. I have no idea whether he really was or whether it was just the panic about the rain. But whatever, there was no way I could get him up our impossibly steep driveway. We all went back to the house. Whereupon I planned an impromptu lesson around an educational DVD, and gave them some maths problems. And my younger son spent the whole day out of nappies, for the first time ever. Not a wasted day, then. Quite an important and useful one. But most importantly was the way the two boys got on together, in a completely different way from the usual squabbling over toys and food. Creating a learning environment was better for them as people.
I am not saying I want the responsibility of home-schooling both my sons fulltime. It was a day off, there was the novelty value, I was not seriously trying to introduce a new concept to my eldest, the younger one was not in one of his non-compliant moods, etc etc. But I can't escape the nagging thought that this was extremely good for them - both - in different ways. What started out as a meaningless scribble on the blank sheet of the morning, an incoherent tantrum, turned into an opportunity to - to what? To spend time with them? To teach them about each other, about learning alongside each other, about being friends?
If I was arriving in New Zealand at this point, I think I would seriously consider fulltime home-schooling. As it is, we have an excellent school, where they are both happy and settled. But there are cracks. We heard this week that my middle son is having social difficulties, that he is not integrating with his peers any longer in the same way that he was managing a year ago. Is school going to work longterm, if he's not happily integrated with the rest of his class? In fact, is it working now? He is able to read and do his sums without difficulty. But he is refusing to engage with group work, messing around at mat time, and refusing to participate in the work of the remedial small groups. I don't believe that there is such a thing as a neutral school experience. Either you are learning good habits, or bad ones. At the moment, he seems to be learning some bad ones, alongside the good ones of literacy and numeracy. It's not going that well. And I have deep doubts about my eldest's ability to manage a full school day, even if we do manage to get the magical ramp that might make it easier for him to get out of the house and into school.
I don't have any solutions. All options have drawbacks. I feel a bit irritable that whenever I mention homeschooling every professional I speak to jumps in to tell me that it would be a terrible idea. But I also don't think that my middle son should be out of school at the moment. He needs structure. School is a good way of providing that. Not the only way, but a good way. My eldest son too, benefits from the structure and energy of school. But I also increasingly feel that they both benefit from my individual attention, teaching them at home. I feel that I am looking at a page full of scribbles, waiting to see if a picture emerge.
After half an hour or so it was clear that it was just panic that had gripped him. I sat him down and explained that his big brother was doing some work at home today, and that if he wasn't going to school we would find him some work to do too. Then I had a little panic attack of my own.
You see, the reason I thought that home-school time was working so well for me and my eldest was that it was exactly that, time for me and my eldest to bond over something interesting. My eldest is really good one-to-one. He revels in the adult time and in the feeling of being treated as an equal. Moreover, he and his middle brother don't really get on that well. They don't get on badly, but they don't play together much. They seem to have totally different interests and glide past each other on a day-to-day basis, sharing space and family life without actually being playmates. Moreover, both can find each other intensely annoying. I envisaged the next few hours as being a three-way tug-of-war with lots of emotional rope burn and without the element of fun.
But in the event, it was OK. No, more than OK, it was actually pretty amazing. First and to my relief, middle son thought school at home would be just fine, and the boys were charmed by the idea of working together. Fortunately, we have two computers, so I set one up on the laptop and the other on our ancient desktop with the spelling site. They worked at different levels for twenty minutes and then we tested them both. Eldest was helpful in supporting his little brother, which I expected. What I didn't expect was that when it came time to test the eldest, little brother both wanted to try to read the words out loud for him, and then wanted to know what all these strange new difficult words meant. For a kid with speech delay, this was good stuff.
I gave myself, erm I mean them, a short break. Then we gathered around the table for our second lesson. Fortunately, I had something I'd planned for a while that was actually easier with three than two. I am trying to get my eldest to loosen his imagination a bit, instead of being gripped with fear and stress every time he picks up a pen to do art or writing. So all three of us covered a piece of paper with shapeless scribbles. Then we swapped our sheets around and took turns in guessing/inventing what imaginary pictures were represented by the scribbles. We finished them off, adding neat leaves to the scribble-tree, a sun coming out from the scribble-cloud. Then we talked about what story might be happening in the pictures.
I was pretty sure they would both be able to manage this task technically. But what I wasn't sure of - and that was a pleasant surprise - was the fact they didn't just work on the same task together, they supported and encouraged each other. I am used to seeing them completely ignore each other's interest and work. This time they were chatting and laughing together as they worked. They looked like two brothers, rather than two boys who happen to live in the same house.
Lunchtime came. At the moment we are experimenting with only sending my eldest to school in the afternoons. I got the boys ready, picked up their bags, encouraged THEM to pick them up, reassured them that they had already had enough to eat and didn't need an afternoon snack, took them to the door, realised they didn't have shoes on, found their shoes, persuaded them both that yes they DID need them, got halfway up the drive...and hit a wall of rain that was so heavy I could scarcely see them.
"I'm sore!" shouted my eldest. I have no idea whether he really was or whether it was just the panic about the rain. But whatever, there was no way I could get him up our impossibly steep driveway. We all went back to the house. Whereupon I planned an impromptu lesson around an educational DVD, and gave them some maths problems. And my younger son spent the whole day out of nappies, for the first time ever. Not a wasted day, then. Quite an important and useful one. But most importantly was the way the two boys got on together, in a completely different way from the usual squabbling over toys and food. Creating a learning environment was better for them as people.
I am not saying I want the responsibility of home-schooling both my sons fulltime. It was a day off, there was the novelty value, I was not seriously trying to introduce a new concept to my eldest, the younger one was not in one of his non-compliant moods, etc etc. But I can't escape the nagging thought that this was extremely good for them - both - in different ways. What started out as a meaningless scribble on the blank sheet of the morning, an incoherent tantrum, turned into an opportunity to - to what? To spend time with them? To teach them about each other, about learning alongside each other, about being friends?
If I was arriving in New Zealand at this point, I think I would seriously consider fulltime home-schooling. As it is, we have an excellent school, where they are both happy and settled. But there are cracks. We heard this week that my middle son is having social difficulties, that he is not integrating with his peers any longer in the same way that he was managing a year ago. Is school going to work longterm, if he's not happily integrated with the rest of his class? In fact, is it working now? He is able to read and do his sums without difficulty. But he is refusing to engage with group work, messing around at mat time, and refusing to participate in the work of the remedial small groups. I don't believe that there is such a thing as a neutral school experience. Either you are learning good habits, or bad ones. At the moment, he seems to be learning some bad ones, alongside the good ones of literacy and numeracy. It's not going that well. And I have deep doubts about my eldest's ability to manage a full school day, even if we do manage to get the magical ramp that might make it easier for him to get out of the house and into school.
I don't have any solutions. All options have drawbacks. I feel a bit irritable that whenever I mention homeschooling every professional I speak to jumps in to tell me that it would be a terrible idea. But I also don't think that my middle son should be out of school at the moment. He needs structure. School is a good way of providing that. Not the only way, but a good way. My eldest son too, benefits from the structure and energy of school. But I also increasingly feel that they both benefit from my individual attention, teaching them at home. I feel that I am looking at a page full of scribbles, waiting to see if a picture emerge.
Thursday, May 23, 2013
The terror of hope
No matter how old you get, it is tempting to surrender to the idea that there might be fairies lurking at the bottom of your garden. (I still insist on the English word, garden: yard doesn't have the same ring to it). Watching my son with his medication this week, I am reminded of Tinkerbell dying onstage, and the command to the audience of Peter Pan to clap their hands if they believe in fairies. As they clap, she revives.
I want to believe in fairies, this week. I want the improvements that we have seen to be more than a random good patch, I want them to be the result of the new medication we are trying. He's been on it for six days, and he's had six good days. Six days where he could move freely, where he had brief episodes of pain but none of them incapacitating him for more than a few minutes at a time.
It is tantalising, like being shown a brochure of a foreign country marked "health." And that is why I am finding this week harder than any of the previous weeks. Because I so want it to be more than random chance, but I know it may well be. We have had good patches before. And adults don't believe in fairies. But I don't want to be an adult, this week, wry and coping with adversity. I want to be a child who believes in the magic of medicine to cure people, especially little people, those who ought to be too young for endless pain.
The little people, of course, is an Irish way of referring to the fairies. When I was a child I watched my Irish aunt draw the sign of a cross on the sodabread dough before it was placed in the oven. I asked why, and she said gently that it had been done for a long time, and didn't do any harm. Much older, I read about the sign of the cross as a protection for the goodness of the bread, lest it be stolen in the oven by the little folk. The form of the bread would remain, but it wouldn't nourish you. I feel sometimes as if my son had the physical strength taken out of him when he was sleeping, the way my aunt's ancestors feared would happen to the bread.
So to see him this week, strong and running around, almost all day everyday, has been breathtaking. So beautiful, and so vulnerable. I don't want to overstate it. He has cried at the pain of descending our, excuse me, fucking steps. He has needed the SN buggy to get him from the lounge to his bed. He has winced with pain climbing the hill, and refused to join the walking school bus because he was afraid it would be too sore. But these have not been all day every day. These have been - dare I say it? - remnants of the pain he was in. I am afraid to discuss it with him, afraid to jinx it. I am superstitious, the way my Irish ancestors were, unwilling to discuss the fairy folk in case they attracted their unwelcome attention. But there have been a few moments where I dared to believe in fairies, dared to believe that this improvement might be real. And then I felt the terror of hope, that shocking deep wave of uncertain light and shadow. Has the sky cleared or are we still mid-storm? Is this the stars we see or a desperate hallucination? In some ways it is easier to be in utter darkness. You reassure yourself that it is OK to be without light, that you can exist this way. Then you are offered the dream of daylight, and all your carefully built defences against despair plunge into nothingness. Because you realise how much you want to believe in fairies, want the magical cure. And you have to simultaneously steel yourself, and remind yourself that you will all survive either way, that this is real life, that there are no quick fixes or easy answers, that this medicine may even help a little, but it is not going to be a total fix.
And that is probably the true meaning of hope, which is a virtue I have battled with this week. "Hell is hopelessness," wrote Moltmann, and "to live without hope is to cease to live." I have hope for my son, whatever the medicine does or doesn't do: hope for the institutions working with him, that they will treat him gently, kindly, with respect. Hope that the sense of institutional bullying we encountered in a meeting this week is unusual, a once-off. Hope that we will have strength, that he will have fun. Hope that healing will occur, of whatever type is possible within the confines of his body: that whatever happens physically, he will be emotionally strong, calm and happy. That he will find joy in life, in love, school, home, friends. That whatever is going on physically, he will have the strength to deal with it. That he will not be emotionally scarred by the experience. All that I pray for, and all that is a prayer for strength, for hope, and yes, for healing. Healing can take many forms, it does not simply mean a child out of pain, a child able to walk and run freely, play sport. It can simply mean acceptance, the courage to know one's inner strength and physical limitations. I do pray and hope for emotional healing, in whatever form God chooses to send.
But oh, this week, it is hard not to have too much hope for the physical kind of healing, too.
Sunday, May 19, 2013
Because I think mothers ought to be allowed to be kind: landscape, history, and not being a slavedriver
There's a ditch where I grew up that was made by human hands. I say hands, literally, because the ditch is prehistoric. So no wheels or fancy implements. Just dug out. It's an unbelievable ten kilometres long. A staggering monument to human perseverence and determination, the Dorset Cursus runs across the English countryside like a sword blade. I'm thinking about it right now, because my son wants to do more study of landscapes. He wants to compare England and New Zealand. This should be easy. When I came to New Zealand, I found the Maori fortifications on Auckland volcanoes looked very familiar: to anyone who grew up in the area of Stonehenge, terraces and earthworks, the digging up of the landscape on a grand scale seems natural, an intrinsic part of the land, not a destruction or alteration.
Hard work, though. In the case of the European monuments, we know little about the diggers. We can only guess what the earthworks meant to them, and why they persevered through illness, hunger, the ongoing struggle for survival. They must have meant more to them than life itself: perhaps the survival of the tribe, or the family.
Parenting children with additional needs, whether by illness, disability or developmental delay, can feel like digging out a ten-kilometre ditch by hand. Yet, rather like the diggers of prehistoric Europe, the work is largely overlooked, invisible: the families who live that complicated life do not feature in many glamorous lifestyle magazines. "And in this artful corner, the family have carefully placed the most gorgeous little commode...over here, you have to admire the artistic sensibility with which this wallpaper was ripped, and those adorable little head-banging marks on the door." Like those ditch-diggers, who perhaps occasionally dared to wonder whether this work was really as sensible and logical as it seemed, the task of parenting kids with additional needs can feel a bit, you know, onerous and ridiculous. Why put ourselves through such unrewarding labour? The answer, of course, is that no one else is there to do it, and the child seems to need our help: just as the land must have seemed to need digging, or the stars demanded that the ditch be begun, or something. Something deep and primitive and unspeakable, but also urgent and necessary. Child-rearing, the mother instinct. As strong and as determined and indefatigable as that strange early human need to dig up large chunks of the English land.
Because that instinct has such strength, and drives those of us mothers who parent SN children to what must seem like crazy lengths, excessive commitment, ridiculous zeal, so there is the popular and I think unhelpful iconography of the SN parent (particularly mother) as saint, or superhuman. You know, the "I don't know how you do it, you must be so amazing." "Special children are given to special people." Of course it is nonsense, any more than the men and women who lived through the London Blitz were special or amazing: they had to bear difficult circumstances because they were there, having bombs chucked at them, not because they were somehow different from their compatriots in the countryside or overseas. I'm quite prepared to admit to a parental talent for eating chocolate. Other than that I think I'm good in some ways, lousy in others. But I try not to be irritated, because I know these people mean well, and it's a way of trying to encourage a fellow human along a difficult road. And God knows, I could use some encouragement at times.
When professionals start on that line of argument, though, I grow suspicious. It's generally a tactic: build you up because we are about to tell you we have no funding so you will have to do the therapy yourself, or not offer you the family support you have requested. It's blarney, designed to soften you up. But at least it's not harmful.
What I find far more challenging - and what I have encountered far more often since my eldest became so sore - is the smug professional assumption of the overqualified and undereducated-in-life health professional. Which is that somehow you are to blame for your son's failure to thrive, to learn to speak, to play appropriately with his friends, to recover from pain. This smug nonsense crosses all bands of developmental and physical difficulty, and I have many friends who have recounted it to me. "When my son was attacking me at home for years, they told me I had to learn better parenting strategies. When he started attacking his teachers, they were the victims and they immediately sent in an army of professionals to support him in the classroom." I remember saying to a social worker in the UK that I needed to be taught how to restrain my children safely, because if they were out of control then one of us were going to get hurt. No one would train me, though, because parents were not allowed to be shown how to restrain their children. The assumption is that it is you that are at fault for your child's violence, rather than your child's violence is biological and that you need help to manage it safely. It is given unquestioningly to professionals working with these children, so why not to parents?
With the onset of my son's chronic pain, I discovered a whole new torment. The assumption of approximately fifty per cent of all the health professionals I had to deal with was that I was in some way "enabling" or "encouraging" my son's pain.
Don't comfort him.
Don't ask about the pain.
Don't go to him when he falls over.
If he says he is in pain, tell him you are feeling fine, so that everything must be OK.
Don't give him pain relief.
Don't use the wheelchair. Make him walk. He won't need it if you don't let him have it.
Don't install a ramp, or a lift, or any other vital equipment, because that will make him think of himself as disabled.
Don't let him play with the other wheelchair-using kid at school, because that will make him think that he wants to be in a wheelchair for life too.
Don't let him have fun racing in his wheelchair, ditto.
He must be in school. Home will make him worse not better. Home education is the worst idea of all.
If you can't physically get him to school, or school calls and says he needs to come home, then make sure you don't spend any time talking to or interacting with him during school hours.
He's just getting what he wants by being still. You need to take away the toys and games that amuse him in order that he has an incentive to move around.
I wish I had invented this list. It seems like a satire to me. When I read them back I am horrified anew by the cruelty implicit in the idea that the best way to deal with a child's pain is to pretend it isn't happening, treat it as a behaviour issue. Trying to deal with this nonsense is like digging a 10 kilometre ditch whilst someone comes alongside you filling it in, then blames you for the fact that it isn't finished yet. So I don't argue, or engage, any more. I simply refuse to deal with that professional any further. It is quite liberating, really, I wish I'd thought of this strategy months ago.
Of course, some parents doubtless do make their child's pain worse by fussing about it. Just like some special needs parents truly are amazing. But the point is that whether you are being praised to the skies or trod into the dust, the parenting appraisal is based on prejudice, generalisation and stereotype. I am not causing or prolonging my child's pain by my maternal instinct to take care of him when he is sore, any more than when my middle child was failing to learn to speak it was a sign that I was a superb special parent. I just am, the same as other SN parents are, we muddle along doing the best we can, sometimes that is excellent and sometimes that is dire. We are digging a very big ditch, and it is taking a very long time. And we anticipate that if we are very lucky, and we do complete this project as planned - if our child does manage to grow up healthy, happy and loving us - then the hard work we put in will largely be invisible. Just like the great Dorset Cursus ran across England unnoticed for thousands of years. People just thought it was the landscape, the way the countryside was. Or the product of another, magical era. (I was told as a child that the local legend was of a Giant having scraped it out with a spoon) Only with aerial photography and modern archeology was it identified as a colossal monument to blood, sweat and toil.
My hope is that as medicine advances and therapy develops, we will have fewer children like mine, who are wound up like springs by their own behaviour or who lie in a crumpled heap, begging for pain relief with the effort of getting out of bed. Hopefully the efforts that I go to will seem to later generations as archaic as doing the washing by hand, or following the horse with a hand-held plough. And to my children, I hope that their recovery and development is so total that all this is only vaguely remembered, like the legend of the spoon-wielding giant.
But if I want that to happen, if I want my work to become invisible, then I need to ignore the siren calls to make my son's life worse by scoffing at, ignoring or otherwise denigrating his experience of pain. For a start, it is ridiculous to pretend it isn't there, like staring at the Cerne Abbot Giant and trying not to comment on the fact that it has an enormous willy. I'm sure the Victorians tried, but I don't go to the Victorians for suggestions on healthy childrearing. And therein lies the other problem. You can repress your child, you can demand that they shut up about their experiences. You can teach them to suffer silently, if you are so minded. (I went to boarding school, I know a lot about that). But the one thing that troubles me about the majestic scope of the Dorset Cursus is that - just like the Egyptian pyramids - I very much doubt that it could have been built without forced, or slave labour. They probably discouraged their slaves from complaining of pain or tiredness too. And I very much doubt the slaves forgot their pain as a result.
I don't want the same scars to wreck the relationship with myself and my son. So I probably err at times on the side of kindness. Today we got halfway up our (preposterously steep) drive, and told me he was sore. We carried on to the top, where he started to worry that he was too sore to take the walking bus to school. I could have forced him, pushed my luck. He would probably have obeyed me. But I don't want to be a slave-driver. I don't want that to be an ugly scar in his psyche, to add to the pain and hardship of that time. We walked down the drive together. Another day of home education, then. Yes, it is hard at points. But I'd rather that than pushing him out to dig his own ditch in pain.
Hard work, though. In the case of the European monuments, we know little about the diggers. We can only guess what the earthworks meant to them, and why they persevered through illness, hunger, the ongoing struggle for survival. They must have meant more to them than life itself: perhaps the survival of the tribe, or the family.
Parenting children with additional needs, whether by illness, disability or developmental delay, can feel like digging out a ten-kilometre ditch by hand. Yet, rather like the diggers of prehistoric Europe, the work is largely overlooked, invisible: the families who live that complicated life do not feature in many glamorous lifestyle magazines. "And in this artful corner, the family have carefully placed the most gorgeous little commode...over here, you have to admire the artistic sensibility with which this wallpaper was ripped, and those adorable little head-banging marks on the door." Like those ditch-diggers, who perhaps occasionally dared to wonder whether this work was really as sensible and logical as it seemed, the task of parenting kids with additional needs can feel a bit, you know, onerous and ridiculous. Why put ourselves through such unrewarding labour? The answer, of course, is that no one else is there to do it, and the child seems to need our help: just as the land must have seemed to need digging, or the stars demanded that the ditch be begun, or something. Something deep and primitive and unspeakable, but also urgent and necessary. Child-rearing, the mother instinct. As strong and as determined and indefatigable as that strange early human need to dig up large chunks of the English land.
Because that instinct has such strength, and drives those of us mothers who parent SN children to what must seem like crazy lengths, excessive commitment, ridiculous zeal, so there is the popular and I think unhelpful iconography of the SN parent (particularly mother) as saint, or superhuman. You know, the "I don't know how you do it, you must be so amazing." "Special children are given to special people." Of course it is nonsense, any more than the men and women who lived through the London Blitz were special or amazing: they had to bear difficult circumstances because they were there, having bombs chucked at them, not because they were somehow different from their compatriots in the countryside or overseas. I'm quite prepared to admit to a parental talent for eating chocolate. Other than that I think I'm good in some ways, lousy in others. But I try not to be irritated, because I know these people mean well, and it's a way of trying to encourage a fellow human along a difficult road. And God knows, I could use some encouragement at times.
When professionals start on that line of argument, though, I grow suspicious. It's generally a tactic: build you up because we are about to tell you we have no funding so you will have to do the therapy yourself, or not offer you the family support you have requested. It's blarney, designed to soften you up. But at least it's not harmful.
What I find far more challenging - and what I have encountered far more often since my eldest became so sore - is the smug professional assumption of the overqualified and undereducated-in-life health professional. Which is that somehow you are to blame for your son's failure to thrive, to learn to speak, to play appropriately with his friends, to recover from pain. This smug nonsense crosses all bands of developmental and physical difficulty, and I have many friends who have recounted it to me. "When my son was attacking me at home for years, they told me I had to learn better parenting strategies. When he started attacking his teachers, they were the victims and they immediately sent in an army of professionals to support him in the classroom." I remember saying to a social worker in the UK that I needed to be taught how to restrain my children safely, because if they were out of control then one of us were going to get hurt. No one would train me, though, because parents were not allowed to be shown how to restrain their children. The assumption is that it is you that are at fault for your child's violence, rather than your child's violence is biological and that you need help to manage it safely. It is given unquestioningly to professionals working with these children, so why not to parents?
With the onset of my son's chronic pain, I discovered a whole new torment. The assumption of approximately fifty per cent of all the health professionals I had to deal with was that I was in some way "enabling" or "encouraging" my son's pain.
Don't comfort him.
Don't ask about the pain.
Don't go to him when he falls over.
If he says he is in pain, tell him you are feeling fine, so that everything must be OK.
Don't give him pain relief.
Don't use the wheelchair. Make him walk. He won't need it if you don't let him have it.
Don't install a ramp, or a lift, or any other vital equipment, because that will make him think of himself as disabled.
Don't let him play with the other wheelchair-using kid at school, because that will make him think that he wants to be in a wheelchair for life too.
Don't let him have fun racing in his wheelchair, ditto.
He must be in school. Home will make him worse not better. Home education is the worst idea of all.
If you can't physically get him to school, or school calls and says he needs to come home, then make sure you don't spend any time talking to or interacting with him during school hours.
He's just getting what he wants by being still. You need to take away the toys and games that amuse him in order that he has an incentive to move around.
I wish I had invented this list. It seems like a satire to me. When I read them back I am horrified anew by the cruelty implicit in the idea that the best way to deal with a child's pain is to pretend it isn't happening, treat it as a behaviour issue. Trying to deal with this nonsense is like digging a 10 kilometre ditch whilst someone comes alongside you filling it in, then blames you for the fact that it isn't finished yet. So I don't argue, or engage, any more. I simply refuse to deal with that professional any further. It is quite liberating, really, I wish I'd thought of this strategy months ago.
Of course, some parents doubtless do make their child's pain worse by fussing about it. Just like some special needs parents truly are amazing. But the point is that whether you are being praised to the skies or trod into the dust, the parenting appraisal is based on prejudice, generalisation and stereotype. I am not causing or prolonging my child's pain by my maternal instinct to take care of him when he is sore, any more than when my middle child was failing to learn to speak it was a sign that I was a superb special parent. I just am, the same as other SN parents are, we muddle along doing the best we can, sometimes that is excellent and sometimes that is dire. We are digging a very big ditch, and it is taking a very long time. And we anticipate that if we are very lucky, and we do complete this project as planned - if our child does manage to grow up healthy, happy and loving us - then the hard work we put in will largely be invisible. Just like the great Dorset Cursus ran across England unnoticed for thousands of years. People just thought it was the landscape, the way the countryside was. Or the product of another, magical era. (I was told as a child that the local legend was of a Giant having scraped it out with a spoon) Only with aerial photography and modern archeology was it identified as a colossal monument to blood, sweat and toil.
My hope is that as medicine advances and therapy develops, we will have fewer children like mine, who are wound up like springs by their own behaviour or who lie in a crumpled heap, begging for pain relief with the effort of getting out of bed. Hopefully the efforts that I go to will seem to later generations as archaic as doing the washing by hand, or following the horse with a hand-held plough. And to my children, I hope that their recovery and development is so total that all this is only vaguely remembered, like the legend of the spoon-wielding giant.
But if I want that to happen, if I want my work to become invisible, then I need to ignore the siren calls to make my son's life worse by scoffing at, ignoring or otherwise denigrating his experience of pain. For a start, it is ridiculous to pretend it isn't there, like staring at the Cerne Abbot Giant and trying not to comment on the fact that it has an enormous willy. I'm sure the Victorians tried, but I don't go to the Victorians for suggestions on healthy childrearing. And therein lies the other problem. You can repress your child, you can demand that they shut up about their experiences. You can teach them to suffer silently, if you are so minded. (I went to boarding school, I know a lot about that). But the one thing that troubles me about the majestic scope of the Dorset Cursus is that - just like the Egyptian pyramids - I very much doubt that it could have been built without forced, or slave labour. They probably discouraged their slaves from complaining of pain or tiredness too. And I very much doubt the slaves forgot their pain as a result.
I don't want the same scars to wreck the relationship with myself and my son. So I probably err at times on the side of kindness. Today we got halfway up our (preposterously steep) drive, and told me he was sore. We carried on to the top, where he started to worry that he was too sore to take the walking bus to school. I could have forced him, pushed my luck. He would probably have obeyed me. But I don't want to be a slave-driver. I don't want that to be an ugly scar in his psyche, to add to the pain and hardship of that time. We walked down the drive together. Another day of home education, then. Yes, it is hard at points. But I'd rather that than pushing him out to dig his own ditch in pain.
Friday, May 17, 2013
Art, drugs and other unexpected events
It's been a tough day. We are trialling a change of medications. This is possibly the most stressful parental experience I know. There's nothing like starting the day with the knowledge that in a few hours you will be willingly exposing your child to the small chance of aortal rupture/sudden suicide risk/life as a chemically dependent zombie to add a little piquancy to your daily routine.
There was no way I was going to be able to send my son to school until we'd checked that the new medication didn't, well, kill him. (It didn't: he's still here, and I am duly grateful, although if he keeps me awake much longer listening to that blinking storytape I may start to rethink the huge care I took not to accidentally overdose him this morning). But after the obligatory sleepless night, it was equally hard to focus on "doing HE" properly. He was, as you would expect without the Ritalin, slightly spaced and hyper: especially as he wasn't in THAT much pain and under normal circumstances, today would have been a good day, the kind when he could go into class.
We agreed he'd spend half an hour on Mathletics, the computer maths game that normally he loves. Today, after twenty minutes, he was champing at the bit "Have I done enough, can I stop?" I was about to deliver one of my "you will do exactly what I say and be grateful boy" lectures, when I hesitated: I was sorting out library books and had a picture book in my hand, a few Andy Warhol prints designed for children to look at. "You can look at this for a few minutes instead," I said, and tossed it on the bed where he lay.
I felt bad that I wasn't making him KEEP HIS NOSE TO THE GRINDSTONE - how will he ever keep a job if he doesn't learn to work hard when bored? (This is not a very good theory, actually. I spent most of my school life bored out of my mind. Far from teaching me self-discipline and persistence it has just given me an absolute horror of boredom, with a consequent inability to spend time doing boring stuff, including, housework paperwork or paid work I am not interested in). But anyway, I wasn't MAKING HIM LEARN. Never mind, I thought, I'm too tired to think about it. Ten minutes later, he came and told me that he’d finished reading it. I told him that the paintings were by the same bloke as we’d seen the day before in Burger King (we do very posh field trips around here). He didn’t seem that interested. “What did you think of them? I asked, casually. “He is AMAZING!” he said, and wandered off as if there was nothing more to say on the subject, since Andy Warhol was, so clearly, fabulous.
I still feel very guilty about medicating at all, let alone messing around with different drugs. I’m doing it because we are desperate, we need to try everything we can to reduce anxiety and hopefully hence reduce the pain. Since the Andy Warhol is amazing comment, however, I stopped feeling guilty about letting him skip Maths. If he’s decided Andy Warhol is amazing, perhaps not everything about today is terrible. Sometimes the most effective learning points come in the gaps between what you expected, wanted and planned to do, and what is actually possible in the real live activity of a living child. Same with meds. You can’t predict what they will do, you just have to take a gulp and see what happens, hope that you don’t do any damage and that something may shift as a result. And you have to go with the flow, and see what’s possible. Then respond to what actually happens, rather than what you hoped or planned.
We wait to see what that “actually” is.
There was no way I was going to be able to send my son to school until we'd checked that the new medication didn't, well, kill him. (It didn't: he's still here, and I am duly grateful, although if he keeps me awake much longer listening to that blinking storytape I may start to rethink the huge care I took not to accidentally overdose him this morning). But after the obligatory sleepless night, it was equally hard to focus on "doing HE" properly. He was, as you would expect without the Ritalin, slightly spaced and hyper: especially as he wasn't in THAT much pain and under normal circumstances, today would have been a good day, the kind when he could go into class.
We agreed he'd spend half an hour on Mathletics, the computer maths game that normally he loves. Today, after twenty minutes, he was champing at the bit "Have I done enough, can I stop?" I was about to deliver one of my "you will do exactly what I say and be grateful boy" lectures, when I hesitated: I was sorting out library books and had a picture book in my hand, a few Andy Warhol prints designed for children to look at. "You can look at this for a few minutes instead," I said, and tossed it on the bed where he lay.
I felt bad that I wasn't making him KEEP HIS NOSE TO THE GRINDSTONE - how will he ever keep a job if he doesn't learn to work hard when bored? (This is not a very good theory, actually. I spent most of my school life bored out of my mind. Far from teaching me self-discipline and persistence it has just given me an absolute horror of boredom, with a consequent inability to spend time doing boring stuff, including, housework paperwork or paid work I am not interested in). But anyway, I wasn't MAKING HIM LEARN. Never mind, I thought, I'm too tired to think about it. Ten minutes later, he came and told me that he’d finished reading it. I told him that the paintings were by the same bloke as we’d seen the day before in Burger King (we do very posh field trips around here). He didn’t seem that interested. “What did you think of them? I asked, casually. “He is AMAZING!” he said, and wandered off as if there was nothing more to say on the subject, since Andy Warhol was, so clearly, fabulous.
I still feel very guilty about medicating at all, let alone messing around with different drugs. I’m doing it because we are desperate, we need to try everything we can to reduce anxiety and hopefully hence reduce the pain. Since the Andy Warhol is amazing comment, however, I stopped feeling guilty about letting him skip Maths. If he’s decided Andy Warhol is amazing, perhaps not everything about today is terrible. Sometimes the most effective learning points come in the gaps between what you expected, wanted and planned to do, and what is actually possible in the real live activity of a living child. Same with meds. You can’t predict what they will do, you just have to take a gulp and see what happens, hope that you don’t do any damage and that something may shift as a result. And you have to go with the flow, and see what’s possible. Then respond to what actually happens, rather than what you hoped or planned.
We wait to see what that “actually” is.
Subscribe to:
Posts (Atom)