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Joe and I finally managed to sit down and have a useful conversation about how we felt about Julie’s continuing self harm. It’s difficult to find time for this sort of complicated and subtle conversation when you are both busy working, and also trying to manage the practical problems of having to care for a member of the family with such a serious mental illness.

Such a conversation was long overdue. We were both having difficulties with the situation. Incidents still occur regularly, and there is no sign yet of them coming to an end. Julie has been improving in lots of ways – she has been on a very successful work experience placement for example – but she is still ill. In the bad old days everybody knew that she was ill; these days not many people realise what goes on behind the scenes, but quite a bit still goes on. She had to call for an ambulance for example, the other day, to the astonishment (and alarm) of many of our neighbours.

The problem in the long term for parents is that you don’t stop reacting, and the reaction doesn’t stop being painful and destructive. When there is a particularly frightening or messy incident, you experience a wave of distress and anxiety which can continue for days, long after Julie herself is beginning to bounce back. It doesn’t really matter whether you’re very actively involved in the event – getting stuck in with the First Aid box and then sitting with her in A&E – or just hearing about it afterwards from your partner.

Nor does there seem to be any way of protecting yourself, keeping the emotion boxed in, or bracing yourself for the impact. I know that some families reject a child who has serious mental illness (quite a few end up in care) and I can see how for some families this is the only solution that gives them a fighting chance of survival.

Sometimes I get angry after an incident. I got more angry when I was recovering from an operation and I was feeling physically very vulnerable. Joe often gets angry. It does feel sometimes as if all the love and care you pour in is being rejected, and it can take a day or two before you can forget this when you speak to them. Joe still feels guilt too – I stopped feeling guilty long ago – but he still wishes he could keep his little girl safe and stop these bad things happening to her. Both of us experience feelings of despair and hopelessness, overwhelming grief, sudden flashbacks, and difficulties sleeping.

It’s important to acknowledge these huge emotions and their impact on us and on Julie. There’s no point trying to pretend to Julie that we don’t feel anything, as if we were automatons. At the same time, we have to be careful not to beat up on her when she herself is at her most vulnerable. How easy it is to let the anger slip out, to list all the things she has jeopardised, to threaten and invoke the spectre of the disaster she has almost brought down on our heads. The hard thing is to find safe ways of saying “We love you, we hold you, we hate what you’re doing to yourself, but we know we can’t stop you doing it. We will go on being here for you no matter what you do.”

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For the last few weeks I have been reading ‘Far From the Tree’ by Andrew Solomon, which is my excuse for not writing a great deal. At 976 pages it is a fairly hefty read! But the pages fly by quite quickly – the writing is simple and vivid – and thank goodness, it turns out that the footnotes take up half the book!

Solomon is exploring what it is like to raise children that are different from you (and, sometimes, what it is like to be those kids). His idea is that we all have multiple identities, and some of those are vertical – inherited from our parents – such as nationality, religion, or red hair. But some are horizontal – unexpected traits that are not shared with parents – such as being deaf, dwarf, or autistic – and some of which, like his own account of being gay, may be rejected by parents. He tackles each of these categories in its own chapter, describing the unique challenges and strengths of the group, and some of the science, intermixed with people he has interviewed at length about their experience. It is the case studies that make the book: some of these characters leap off the page, and there are some extraordinary stories. Solomon makes a very sympathetic interviewer: he spends time with his subjects – not just an afternoon, but returning to visit again and again over years, building close relationships that often become real friendships. He stays in their homes, he keeps in touch, and it does feel as if some of his subjects – especially the most poor, isolated and discriminated against – gained a real sense of validation from his involvement.

Later in the book, Solomon deliberately moves away from what we all think of as “special needs” families. He looks at families where children are prodigies, or the product of rape, or become involved in crime. There were some good points here, and the interviews were thought-provoking, but I’m not sure he made such a good case for some of these categories. The chapter on children of rape, in particular, felt as if it needed a book all of its own. As Solomon admitted, the real connection here was amongst the mothers, not the children, and this group sat uneasily amongst the rest: a story to be told, yes, but perhaps in a different way. It didn’t help that while many of the families in the early chapters were similar to each other (mostly American), in this chapter, Solomon travelled to Rwanda to explore the subject of rape in war. Changing cultures so dramatically is pretty jarring – how can we relate these women’s experience to mothers in New York? This section felt very compressed, awkward and uneven.

But even just for the first half, I’d recommend Solomon’s book to anyone who has found themselves parenting kids who are “different”. Much of the time, parenting odd kids feels isolating and thankless, but this book is full of parents struggling to raise such children. Amongst these pages you find people you recognize, muddling along from day to day, sometimes showing amazing courage and tenacity, sometimes laughing at themselves, sometimes giving up and hiding under the duvet. But for most of these parents, amazingly, once they had got the hang of it, a lot of them seemed to gain from the experience. It was hard, and they grieved at first, but they no longer wanted their child to be any different.

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I prepare a list for Joe of things to do while I am in hospital recovering. The list seems to grow and grow! Belatedly I realise that I can never set down all the things that seem important to me in any given day.

It is not just a list of things to do – bins to be put out for collection, or people to be paid. It is a list of things to know, things to be aware of. Knowing that given half a chance Duncan will leave for school skipping breakfast, having nothing to eat until the evening. Knowing that Julie has a mock exam one afternoon, increasing the risk of a crisis and so avoid commitments you cannot break in a hurry. Knowing that Sandy who cleans our house has just had an operation herself and needs to be reminded not to do heavy lifting.

All these odd bits and pieces make up a mother. All these stray items of information, injunctions and inspirations. Motherly tentacles reaching out into the lives of the family, checking the pulse, testing the temperature.

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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.

20140207-144033.jpg I’m trying to take a step back: step back from caring so much for my children, step back from doing so much for them. I think it’s a good thing for me and for them.

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!

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O wad some Pow’r the giftie gie us
To see oursels as others see us!

This week I came up short against an unflattering image of myself. I am sure it is good for the soul, to meet your distorted twin occasionally, but probably best not to meet it too often. Apparently I am a pushy dominating mother. (Sometimes I beg the children to let me do a bit of pushing and dominating, but they never let me.)

One of the school staff has started mentoring Duncan – trying to help him cope with exam year. You have to remember that staff doing this are frequently giving up their (very rare) free time, because they honestly want to make a difference to students’ lives. But it’s no surprise to find that, untrained, they can drift into pop psychology. This is what happened here: Duncan told his mentor that he wanted to study Physics at [Scary University], and his mentor thought that very outlandish. How could a child – a child with his problematic school record – have dreamt up such an ambition on their own? It must come from the parents: “You don’t have to live your parents’ dreams, you know.” Throw in bits of gossip about Julie heard in the classroom, and the mentor was convinced he was on the right track: “You don’t have to get as good grades as your sister. The two of you don’t have to get good grades just because your mother expects it.”

(He probably doesn’t know much about Julie and her illness. He may know she has been in and out of school. Perhaps he believes she is just highly strung, made a bit anxious by pressure from mum. He likely doesn’t know about the hospital, the medication, the sadder reality of mental illness.)

Duncan wasn’t getting caught up in all this. He was cross with his mentor. “He doesn’t believe that it’s what I really want to do.” he said, “You’ve never pushed me into anything. I do want to get good grades and go to [Scary University]. I don’t secretly want to do something else: I just want someone to help me do this!”

As Duncan is the first to point out, from his perspective the real problem is that his parents haven’t been pushy enough. We never have bothered ourselves about his grades; we are convinced that his many good qualities will help him succeed in the end; and we think he should work out for himself what he wants to do in life. (In fact neither of us think much of this plan to apply to [Scary University], but it has to be his call.) Anyone who thinks we have been pushing him around doesn’t know Duncan: the last time I successfully pushed Duncan around he was in a buggy.

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Thanks to Loobie1805 for the photo which can be found in full here

The hedgerows and skies at our end of the village are awash with young house martins and sparrows, newly fledged. When I went out for a walk yesterday evening I disturbed a whole gaggle of them feasting on the evening midges, and they eddied up around me in a twittering swirl of beating wings.

All the houses round about are hosts to house martin nests. We are torn between pleasure at living at such close quarters with these remarkable birds, and irritation at the noise and mess they make. They are far from tidy neighbours! There is a nest above Julie’s window, waking her in the early mornings. These birds have still not fledged, and we watch the tiny heads poking above their basket, wedged precariously under the eaves, waiting to be fed by their exhausted parents.

The other day I watched a nest on a neighbour’s house fledging all at once. Most of them were out within a matter of seconds, but there was one that did not fly out with the rest, clinging on to the wall for more than half an hour. It was tempting to imagine that what was going through its mind was (in bird speak): “Oh s**t, oh s**t, oh s**t!” The ground must have seemed a very long way down. Perhaps it had more imagination than the rest. Finally it pushed itself off the wall and within seconds was indistinguishable from its siblings, boomeranging around the close. All adults watching, humans included, breathed a sigh of relief.

I wonder whether the young birds start feeding themselves as soon as they fledge. Do they just barrel through clouds of insects with open mouths? Do they come back to the nest for a while (I could see they were trying, but failing, to master how to land and squeeze themselves back into that narrow entrance)? Do they have to roost straight away, spending that first night in an alien world, uncomfortable, cold and homesick?

Julie’s leg is slowly healing where she cut it, and she has not attempted anything else. We are all holding our breath to see how she handles sixth form in a few weeks. To see if she is able to fly or clings to the wall.

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