This week’s post is back on my old blog Julie’s Mum because it is much more directly relevant to that side of my life. To be honest, if Julie had never suffered from mental illness, I would never have believed that wards like the one she was admitted to even existed. Little specialist units like the one in which LB died are largely invisible, often unknown even to other services. And as we found, in these isolated pockets of the NHS, unhealthy practices can persist.
I went to the hospital and had a biopsy taken this morning. There is a small risk that there is cancer in my thyroid – a small risk. For years I have had a big rather friendly goitre on my neck, which is now becoming painful and intrusive, and the doctors want to check it out.
Do I talk to my children about this? Is it worth unsettling them, when in all probability nothing will come of it? I have decided that no, I will not tell them. No matter how I approach the subject, I think they might still give it too much significance. They are, after all, still young.
I am curious though about what we choose to discuss, and what we choose to hide from one another, and why we hide anything at all. Perhaps if I was open about my cancer scare with my kids and they watched it unfold, they would become more resilient about similar worries they might have to handle in later life. After all, if the only stories about cancer you ever hear are about those that cannot be hidden (i.e. prove fatal), you might not appreciate how many biopsies return negatives, or how often people survive cancer.
Sometimes we hide things because it’s clear they just find it too painful. I don’t always tell Joe when Julie has self-harmed, for example, because it upsets him so much. It’s only recently he’s been able to admit how he feels, but the distress shows clearly in his face and in his body language. Sometimes we hide things because it’s difficult to handle the other person’s reaction. This is probably why I am not telling my children about my tests: I don’t want to have to deal with their feelings of distress.
I’ve been a “special needs” parent for a while now – since my son was about seven, and my daughter thirteen – and I’ve got the T-shirt. I’ve been to special needs conferences, I’ve battled through the statementing process and I’ve got the school SENCO on speed dial. All schools use terms like “special needs” or “different needs” liberally these days, and a large secondary school will have a small armies of additional adults called teaching assistants (TAs in the lingo), helping individual children.
So it’s sobering to hear what my children think of the word “special”, after a lifetime growing up hearing the term bandied about by adults, especially in relation to them themselves. One of my children had to fight to be included in the “special needs” camp and win funding for her very own TA; the other child has spent the last few years fighting to keep out of the “special needs” category, struggling to evade the SENCO’s grasp.
It can come as no surprise to anyone who knows children (or who was ever a child) to find out that “special” has joined that list of words that are changing use rapidly, and generally heading south. Just as Obama wise-cracked about “the Special Olympics” (and then had to hastily apologise ), you can bet there’s a teenager near you telling another teenager that they’re “a special”. Is it only a matter of time before “special” goes the way of words like “spastic”? When I was a child the word “spastic” was perfectly respectable (as in The Spastic Society) before sliding into taboo.
So no kid wants to be “special” these days, but of course as teenagers they are also anxious to find out what it is that makes them different from everyone else. This may be partly because we educate them in such huge cohorts – my kids are at a school over 1500 strong. Even though they seem to prefer to do everything in packs, they are simultaneously hunting for that elusive personal signature.
This is a challenge for any kid who has ever been labelled “special”. They can embrace that label and identify themselves by it, but that’s not always a very successful strategy. If you decide to be assertively Aspie, for example, that only works as long as you feel that having Asperger’s Syndrome is generally positive. You might feel enthusiastic if you credit it with giving you mathematically superior powers, but more reluctant if you think it puts off prospective sexual partners. Reject it, and you redouble your efforts to find another way to define yourself.
I didn’t think it would make much difference when Julie turned 18 (not so long ago) but it does. She may have been in adult mental health services for a while, but now she is legally an adult in every sense, it has made a difference. I realised something had changed when the school mentioned that they wouldn’t need my consent any more to take her on trips. (I still have to pay for them of course!)
It is a struggle though. This morning, as the rain lashed down, I had to really fight to stop myself offering Julie a lift to school. It is only a mile, and she is a very capable cyclist, but the urge to protect her was very strong. I had to remind myself that she is able-bodied and at her age I was not just cycling to school but travelling to the other side of the country to start university. It would be kindness to drive her there in the car, but it would reinforce the belief that she cannot cope without me.
The problem is, if you don’t stop looking after them, they don’t learn to look after themselves.
Another watershed: the self-harm is still going on, but not quite to the same degree, and now I ask her to dress the wounds herself if she can. Julie had to go to A&E more or less every three or four weeks through the whole of last year, but at the moment each incident is less severe and we can often treat it at home. I want her to learn to do this by herself: know where the antiseptic is, and the plasters, and recognize when it’s too serious for her to handle alone. It’s a huge shift, and a hard step for me, but it is important. It may mean that we run a risk of poor treatment in the short run, but in the long run the risk of having a fully grown adult dependent on her mum is much more insidious.
Joe has been away for work this week, and it has been a good excuse to try and drop some of the habits of doing so much for the kids. Instead I’ve asked them to help me round the house, doing the washing up and emptying the bins more often. I am already beginning to imagine the day when they are more competent than I am – I shall be quite happy to be laughed at!
So I am sitting in my office talking to a junior member of my team about his work record, which recently has not set the world on fire. Nigel has a string of woes: he doesn’t like where he lives, he finds the commute to work very tiring, and he has a perpetual cold. I feel quite sorry for him: Nigel should not be living alone really, he ought to be back at home with his mum.
In the middle of the conversation my mobile phone, which I have carefully placed on the desk beside me, rings. I apologise to Nigel and take the call briefly: it is my daughter Julie calling from hospital. Can she phone me back? I ask, I am in a meeting at the moment. I know that I can trust her to phone me back, I know that she is in safe hands, that the nurses will look after her. For a brief moment, the image of my daughter as I left her last night, lying in the hospital bed, looking quite green, having just thrown up violently into a little cardboard bowl, intrudes into my office life. I return to Nigel and his man-size box of tissues. Just for a moment I have the feeling that this is not quite the right thing to do, or the right place to be.
This must be Julie’s seventh or eighth overdose this year, I have lost count. This time she has ended up on a drip, meaning an overnight stay and vomiting. Sometimes it is a cut requiring stitches: recently it has often been both cuts and overdoses. Every now and then, someone in accident and emergency lovingly counts up the number of times she has attended, and sends them to her care coordinator. I am always astonished by the number of trips that she manages to clock up in a year.
It is nearly routine. She took this overdose at school so early that I had not even left for work: I was able to pick her up from school and drop her off at the hospital on my way in. For the rest of the day, I carried on almost as normal. Just a discrete call to her care coordinator from my car, and then putting her out of my mind, until I had time to deal with it later. Nobody at work had any idea that it was not simply another ordinary day.
But you never do really put it out of your mind. It is always with you. Every time it happens – and this is once every three or four weeks – your body has the same reaction. Both Joe and I have commented on it: that feeling of physical exhaustion, as if you were walking around with 10 kg weights suddenly strapped to both of your legs. This is even when there are no extra journeys to make, no wounds to bandage, no waiting rooms to endure, no phone calls to make. It is just a natural reaction: your body’s way of registering the blow.
Between incidents, she functions just fine. She is doing well at school, she has friends, she can take the bus into town on her own, she is talking about leaving home to go to university. Even while I was planning to visit her in hospital, a neighbour came in to tell me how wonderful it was to see Julie back to her old self. I could not bear to break the mood and tell my neighbour that I was packing her overnight bag because she would be spending the night in hospital. After all, she would be back again next day, and back to school again too. Nobody need even know. If you don’t look too hard, it looks as if nothing at all is wrong.
When Julie started at sixth form, the very first thing the Maths department did was sit down the whole cohort of Maths students and give them an exam. They wanted to sort out who needed what help to get through the A level. Actually, I think that’s a very good idea: it focuses resources where they’re needed, and makes sure the students understand where they need to put in the extra work. It’s surely the opposite of one-size-fits-all.
But of course it all depends how you handle the kids who don’t do very well in your test. Can you resist the temptation to imply that they are defective? That, but for them, one size really would fit all?
On the basis of her mark in this exam, Julie was duly assigned to the remedial group, needing extra tuition, and given extra homework to complete. A letter was sent home explaining this and making it quite clear that if she didn’t pull her socks up and do better by the end of the first half-term, she might not be sitting her A level in Maths at all. It was one of those “must”, “should not” and “insist” type letters. The message was not “you have a problem and we can help”; the message was unequivocally “you have a problem and you are to blame”. The same message was given to the students in a meeting. Sheep and goats had been sorted, and they were the goats.
Julie was distraught. She had only just started sixth form, and she was struggling to negotiate the crowded classrooms and corridors of the school, after years of having to be taught in hospital, at home or in a separate unit. She was still ill, still heavily medicated, and still needing twelve hours sleep a night. She had done fairly well in Maths at previous levels, but she has no confidence at all. With her time severely curtailed by her need for sleep, the extra Maths classes ate into time needed for her other subjects, and it was impossible to see how she could meet these demands for extra homework. But without Maths at A level, she could say goodbye to her modest dreams of taking a technical degree.
I got in touch with the Maths teacher, and suggested that she give Julie a break. I explained the circumstances, and that testing Julie straight away was likely to give spurious results. But I was talking to a brick wall: it was obvious she had no real idea of the problems Julie had to overcome just to get to school at all. In the end, I told her that I would monitor Julie’s workload, and if there was no time to do the extra tuition or homework they were demanding, then I would instruct Julie to skip them. I told her that when she retested Julie it would have to be with extra conditions – with Julie supervised in a private room and given time for breaks – to cope with problems of concentration. And I told her that if she tried to take Julie off the A level course then she would have to fight me first. I have enough Maths of my own to know that any school should be able to get Julie through that exam reasonably well.
Julie was retested at the end of half term – in the revised conditions – and passed. Actually, not so much passed, as thrashed it: she got 100%. She no longer has to go to extra lessons or do extra homework or attend any more unpleasant meetings to be berated for poor performance. She was never in need of remedial Maths classes, she just needed someone to put more thought into assessing the performance of a student in her circumstances. She was really a sheep, and always a sheep. But in my view she was always really Julie, and nobody is a sheep or a goat.
Now we have a new problem; now she has been reclassified as a sheep, and a prize sheep, there is pressure on Julie to be “groomed” for Oxbridge application. This is no more appropriate than remedial classes were: she doesn’t need the stress of applying to Oxbridge. What she needs is someone to recognize what a fantastic achievement a place at any university will be – what a cause for celebration for a kid who has her illness – not a snobbish insistence that only a place at one unversity or another really “counts”.
1. (Before starting the course) This subject is really easy, I’ll easily get an A in this subject.
2. (During the course) Exam? What exam?
3. (During class revision sessions) Yeah, yeah, this is really boring.
4. (One week before the exam) Oh shit, I have an exam in a week’s time.
5. (Trying to revise) Why don’t I understand any of this? I don’t remember learning any of this.
6. (After looking at a past paper) My life is over, I am going to be slaughtered.
7. (Reaching the bargaining phase) If I faked my own death they would probably give me a good grade posthumously.
8. (The night before the exam) I could work as a dustman. Surely you don’t need good grades to work as a dustman?
9. (In the exam, just after turning over the paper) Oh no, anything but that.
10. (Afterwards) Fantastic, I will never have to study that subject ever again. What do you mean resits?
(My son is sitting an English exam next week. We’re currently at stage 6.)