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!