Not a barrel of laughs: a transition diary, of sorts

The End

2008-01-04T01:34:00.000-08:00

Time to wind up the blog, I think. Biff's moved out; his person centred plan is abandoned to all intents and purposes (except for a few questions from the home manager); he's had his first visit home; his finances are sort of sorted; he's on course to attend the local college next September. He's been transitioned. Stuff will happen in future - I hope, among other things, that his wish to live in a house will come true - but it might be all too small and scattered to record.

Sorry I never got to The Transition Guide, but I'd recommend you send off for your own free copy and see for yourself. Either phone: 0845 6022260 or email: dcsf@prolog.uk.com.

If I had advice - and who am I to give advice? - I'd repeat that if you think you have problems then you must get help:
Don't allow yourself to be fobbed off until your young person's fourteen or so, as we were.
Get yourself a social worker.
Don't accept it when Speech and Language Therapy, or physios, or whoever, tell you there's no more to be done. Ask yourself, and them, whether their assessment would be the same for a non-disabled child.
Join your local Parent Council, if you have one. There can be problems if they're advocating stuff you don't agree with (esp when they wield a fair bit of power as parents' representatives) but generally our local one is a great force for good, so more power to their elbows and any other relevant body parts.
Don't disregard the idea of your young person going into residential care - it might be the best thing for all of you in some ways. If you reject the idea, study your reasons - is it really for their sake, or is it because it breaks up your family, or what? All I'm saying is: consider it.

The 'small personal allowance' for people in residential accommodation, in case I haven't mentioned it already, turned out to be £20.45 per week. Any resident also entitled to the mobility element of DLA can also keep this as spending money.

Think that's all. Good luck.

The First Noel

2007-12-28T04:32:00.000-08:00

Well, sort of, for us, with Biff in the home. He came home from the 24th till the 27th and will be back on Monday to stay over New Year's Eve night.

He was a bit of a monkey (strangely, his behaviour was pretty good till he'd got his presents) and I thought that when he went back there'd be relief and a lessening of tension. Well, the tension eased but, other than that, it was a bit sad. For a while anyway. I feel guilty too that we've been out to see friends whom Biff would probably have loved to have seen too, and we're going to have to lie to him about it.

Still, we're taking him for a pub lunch tomorrow, and really, it's just a version of how any parent feels when a young person leaves home, isn't it?

Roll on the new year.

Result, I think. (Over the moon, anyway.)

2007-12-21T06:11:00.000-08:00

After many, many years of complaining loud and long about the Speech and Language Therapy offered (or rather, not offered) locally, at Biff's review I asked again about the possibility of a meaningful assessment. The school has a new therapist on board who rang me, arranged the assessment and has now sent her findings through. All within a month or so.

Apparently Biff's language is 'very unintelligible' to people who aren't familar with him. Strange that words like that can warm your heart, isn't it? But obviously, now that we've found someone who's willing to admit there's a problem and who has suggested several therapy sessions, there's a chance Biff's speech can be improved. It's maybe sixteen years since our first contact with SLT and this is only the second time anyone's suggested anything positive. Last time, the therapist in question left very shortly after her recommendations were made - it all gets a bit Kafkaesque and scary. Maybe I watched The Prisoner too much when I was younger. Or maybe I'm just paranoid.

Whatever, as soon as the holidays are over I shall be ringing to check when the sessions start and what feedback I can expect.

High School Prom

2007-12-21T06:02:00.000-08:00

A new departure for Biff's wonderful secondary school this year was the sixth form prom, held yesterday. I suspect there are things they'll change about it for next time - maybe make it clear it's not appropriate for parents to come along (did Danny and Sandie have Mom and Dad tagging along?) and maybe hold it in the evening rather than during the day. But reports are that Biff had a great time. Barney went along very briefly to take a couple of photographs and there's this big lad smiling out with his smart shirt and tie (the first time he's worn a tie since his first communion service) and apparently he was dancing and generally enjoying himself hugely. He loves a party, but it's very recently that he's morphed from people-watcher into active participant. His confidence is growing daily. Could part of that be down to the move into more independent living? Dunno, but I'm glad to see it anyway.

The council as Oliver Twist

2007-12-20T05:24:00.000-08:00

They want more. I have now received a second invoice and am taking bets on a third arriving before Christmas.

Despite that, the money's sort of sorted. Honestly, if you have a young person going into residential care, take my advice: don't pay anything to anyone until they send you an invoice. At the same time, don't spend the young person's benefits - which no doubt you'll continue to receive - even on the young person themselves. At some point someone will say: give me all your money, as our local council is doing now, and confusion reigns as, of course, I've already paid over all the moneys involved to the home.

The home seem more on the ball than the council. When I said to the director that it would be so much easier if the council prepared the fabled A4 sheet of instructions on finance that I'm always hankering after, she replied that they can't do that, because how they arrange things isn't how it's meant to be done - we're not supposed to wait three months before we get an invoice. The wheels of officialdom turn very slowly.

Okay, anyway, I feel like the home and I are on the same side. Long may it last.

Biff's coming home from 24th to the 27th Dec and then again overnight on New Year's Eve. Bo cried when I told her as she wanted a day alone with me and Barney. It's hard keeping a balance and remembering to allow for how badly Biff's behaviour affected her. Will sort out a Mum, Dad and Bo treat in between visits to try and make her feel better.

I said ages ago I'd report on The Transition Guide which I've had for a few weeks now, but it's kind of slipped into the background. One for the New Year.

Money, money, money

2007-12-14T02:45:00.000-08:00

Anyone remember how I kept asking and asking about the money situation regarding Biff's move to the home, and how no one seemed willing to give me a clear answer?

Okay. Yesterday, three whole months after he moved, the local authority sent me a letter saying what his contribution to the care costs would be. The amount equates exactly to his Incapacity Benefit in Youth income. This started alarm bells ringing because, in that case, what was the DLA for? Not for us obviously! Turns out he shouldn't be getting the personal care DLA now he's in the home. He can have the mobility element but they don't take that into their calculations; he can have it as extra spending money.

The problem - quite a sizeable one - is that I've been sending cheques to the home (as I thought I was meant to) covering all Biff's benefits. So the overpaid DLA has gone to them. How enthusiastic will they be, do you think, about repaying it? Early signs are: not a lot. About as enthusiastic as they are about my plan to keep the small mobility element in an account I have access to, so that we can get clothes, etc, for Biff or he can have some spend when he's out with us. They don't like that idea at all!

Ho hum. Keep calm and carry on, and all that.

One other thing worth mentioning about finance: the amount of spending money a resident gets is set by the govt at £20 or so per week. I don't know if it's the same everywhere but our local authority lady says that they recognise that younger people in homes generally need more than elderly people, as they have more active interests and social lives so, if he can't manage, to let them know and they should be able to offer him a bit more. Seems surprisingly understanding and easy going. I wonder if there's a catch or if it's a loophole which will be closed forthwith when someone cottons on...

One for sorrow, two for...

2007-12-08T00:17:00.000-08:00

Third post-school provider: a not-for-profit recycling plant, which takes students on courses run by the college in their training room. The atmosphere was fantastic, they have kitchen and living rooms set up so the students can learn life skills as well as skills for working life. The funding makes the govt policy behind education fairly transparent - Skills for Working Life is free as part of their college provision; Life Skills costs £30 per day. This is despite the fact that life skills will be the most some students can hope for and what will be most useful to them. Anyway, my choice for Biff would be between the college, where he might want to go to be with most of his friends, or this place. But now he needs to visit and see them for himself.

Not sure how relations with the home stand. I got a weird reply when I emailed to say Biff had stomach pains - he'd rung to tell me - maybe they didn't believe me, or didn't believe Biff. And the manager didn't turn up for the visit to the recycling plant. Trying hard to like this bloke but he makes it hard.

Post-school opportunities

2007-12-05T04:54:00.001-08:00

Boring title, eh?

Anyway, we went on the first two of the visits to post-school training providers this morning, and it's good to see that there's actually a bit of choice around at the moment. Biff's home's representative got lost again. Will suggest next time they bring Biff with them; he's much better at finding his way than any of the staff.

Provider One just set up this year, altho' they've been involved in the sector for several years. They offer a range of activities between 10 am and 3 pm, altho' longer hours can be negotiated, and also some evening activities. Notable was the radio station the learning disabled clients run together with a local station and the fact that in the same building there's a fully equipped and accessible gym. The gym's expensive, but generally the provider only charges £6 per day, which is terrific.

Provider Two was something else. Amazing. No accredited courses. No real timetable. No adherence to pc rules. But they offer literacy, woodwork, self-help skills, etc. The clients don't get certificates but they learn and they have fun. Lots of fun. The main reason it's such a fantastic success, I think, is the manager's personality. He's totally into his job, loves the clients, ribs them something shocking and takes their banter in good faith. I can't imagine there are many days when the service users aren't doubled up with laughter most of the time. On the downside, Health and Safety doesn't seem to have a high priority - this might not matter too much with some clients but might for others. And possibly the lack of a regular routine might bother Biff, altho' they have autistic people who've flourished under their regime. Anyway, I'm going to get tickets for the Christmas show they're putting on in a couple of weeks and expecting a good night.

Something we have to consider with these places is that Social Services already fund Biff's home to look after him and I'm not sure we can ask them to fund him further, altho' they haven't ruled it out. The home, whilst charging huge fees, also employs a lot of staff and is not keen (it seems) to pay for a lot of outside activities. But at the same time, it's important that Biff sees people outside the home. We could fund Provider One for a day or an evening, but we can't afford the £25 per day that Provider Two costs. Lots of things to consider.

No doubt there'll be a meeting coming up.

Sweet dreams aren't made of this...

2007-12-01T01:23:00.000-08:00

Some time ago, just before Biff moved out and when things were pretty stressful at home, I had a dream in which the four of us were walking up a grand staircase. There were quite a lot of people around. Barney was in front with Biff, and Bo and I brought up the rear. Then Biff started messing around or something and I got distracted, trying to make sure he was okay and behaving etc. When I looked around Bo had gone.

I saw this as significant at the time as the social worker was just then very worried about the effect on Bo of Biff's behaviour. But lately I've realised that even tho' Biff's moved out, we still leave Bo on her own for quite long periods, to spend time with him. In ideal circumstances, she'd come along and we'd spend happy family time together, but because she hates his behaviour so much, she refuses to come. So, what do we do? Stay home with her? Sometimes I stay home or we otherwise split the children between us but we can't always do it. Force her to come? How much resentment would we be storing up there?

Anyway, that aside...I'm going on a couple of visits this week, arranged by Biff's school, to post-school training providers, to see if they'd be suitable for his non-college days next year. Looking forward to seeing what's available and hoping it won't be too depressing.

My Future Choices

2007-11-25T04:33:00.000-08:00

Our first Biff-free weekend since he moved. It was going to be difficult organising a time to see him due to his railway volunteering commitments yesterday and Barney's work today. If I'd known Bo would be sleeping out last night, I could've arranged something but I didn't so...anyway, it gives me a little free time to enter a writing competition and work towards the two uni assignments due in soon. And to mention one or two things from the new edition of the Transition Information Network's magazine, My Future Choices.

Featured subjects include:

Bullying - Mencap have found that 8 out of 10 learning disabled children are bullied; 6 out of 10 are physically hurt by bullies. This has happened to Biff when he was playing out for a rare half hour (just loosely supervised) near a friend's home. We thought the lads he was with were playing nicely with him. Next thing we know he's home in tears. When I asked why he didn't run away he said it was because every time he got up they knocked him down again. How much worse for those children who are bullied on a regular basis near home or at school.
Anyway Mencap have started a 'Don't Stick It, STOP IT!' campaign (http://www.dontstickit.org.uk/). And the government has produced a guide to embedding anti-bullying work in schools, particularly aimed at keeping disabled pupils safe.

The move from special school to mainstream college - and what can be done to make the move less stressful for learning disabled students.

Independent Travel - One young woman's tips (from her experience and training) for safe independent travel to college.

That was the stuff that grabbed me but there's lots of other stuff including information from the National Autistic Society on keeping safe, advocacy, and the dreams of a group of disabled young people, as well as the usual news section.

http://www.myfuturechoices.org.uk/

http://www.transitioninfonetwork.org.uk/

Where the heart is

2007-11-23T06:29:00.000-08:00

Am I kidding myself?

Last night I took Biff along to his school craft fair. We bought a few things for Christmas and met a few people we know; it was okay. Then I took him home. And all the way home he told me how much he doesn't want to live in the home he's living in.

Now then, what do I do? The home is fine; the staff are lovely; Biff takes part in lots of entertaining activities. Not perfect maybe, but certainly a lot better than many homes you hear about. Biff's choice however would be: a) to come home again, altho' I think he's realised that won't happen or b) to live in a house with a girlfriend or on his own.

Trouble is, he has no understanding of what either of those last options would be like. I try to explain diplomatically that he wouldn't be able to cope alone, as I've tried to explain previously that he might never be able to drive a car (this he finds easier to imagine as he knows how I struggle with it...) but still he knows that he doesn't want to be there. It's not home. Not his home.

I think it might help a little if we can get into the habit of spending more time there with him, rather than always collecting him and dropping him off quite quickly. If we ask him to make us a cup of tea, will he feel more as tho' it's his domain rather than just an anonymous, sanitised environment? I don't know. But he's starting to sound like a kid in an orphanage waiting for a new mum and dad. And that's not what we wanted for him.

Reviewing the situation

2007-11-19T05:08:00.000-08:00

So, this morning was Biff's last school annual review. This has been such a great school, and he's enjoyed it so much, that I'm slightly nervous about the forthcoming changes myself. Goodness knows how Biff must feel. Anyway, it seems that, despite the doom and gloom I'd heard about college funding, the most likely scenario for next year will be a 'full time' college course (this translates as two and a half days - would be lovely if 'full time' jobs were organised on the same basis...) and then whatever he would like to do, and there's funding available for, for the rest of the week.

The college course options are 'Skills for Working Life' and 'Independent Living' - both of which would be suitable. I'm going to visit the college with a group of parents from school next Tuesday. The home will also send someone.

The rest-of-the-week options are:
Working in the garden centre in his present school's grounds for a day.
Working in a different local garden centre for a day.
Working in a pottery the home owners are setting up at one of their other local homes.
Attending one or two other local working environment type places, set up specifically with a view to employing disabled workers. I'm visiting one of these also in a couple of weeks.

Biff also, of course, gets to visit and choose, and he'll spend a day a week at the college nearer the summer. The situation's complicated a little by the fact that he's already in a placement but, still, I'm cautiously optimistic. Very cautiously.

Death by Indifference

2007-11-18T01:01:00.000-08:00

So much to choose from: The Transition Guide, the new edition of Future Choices, the fact we have Biff's final and crucial annual review at his school tomorrow?

Will get to all those in time, but I just wanted to mention first a report from Mencap called Death by Indifference (www.mencap.org.uk/deathbyindifference). It's been out a short while and is about the way that people with learning disabilities are treated by the medical profession. Yesterday I finally got round to having a look and ended up sitting at the computer in tears, thinking about not only the needless deaths (in hospital!) of those with learning disabilities, but also the sheer terror some of the patients must feel, surrounded by people they don't know, in a strange and frightening environment, and feeling ill to boot. Just read the case studies - they'll break your heart.

I've long felt that Biff would've had earlier intervention with his gait problems, and more effective intervention with his speech problems, if he hadn't been learning disabled. I know when he was in the regional teaching hospital two years ago, he was terrified at being on an adult ward with few staff around and no one with time to spend on making him feel at ease. I also know that he's very difficult to deal with in a medical situation and that the latest investigations were abandoned due to him refusing to have an injection.

Transition has a significant bearing on this, of course, because once young people are eighteen they are adults and able to make their own decisions, any attempt to hold them down or 'force treatment on them' could be construed as assault. It was because Biff was sixteen, well into transition stage, that he was put on the adult ward despite its total inappropriateness and his resulting distress.

On the other hand, when he was small and was terrified of having a pot off his leg, a wonderful doctor came along, convinced him a biscuit tin lid was a racing car steering wheel, and distracted him sufficiently for the procedure to be completed. I couldn't have done it - Biff's famously undistractable as a rule - but maybe there should be a new role: communication expert or something, to specialise in that kind of situation? Or maybe there should be small well-staffed units for people with learning disabilities to use in hospitals away from the hustle and bustle which is frightening enough for the non-disabled patient? With staff who are experienced in coping with people who present as difficult or who simply can't communicate?

Hey Baby, I'm Your Telephone Man

2007-11-13T22:58:00.000-08:00

Hot on the heels of his new, jeans-wearing persona comes Biff's latest incarnation - as someone who phones us on his mobile. He's had a mobile - an old, simple one - for a while, but most of the numbers in it were, say, Virgin's enquiry line or something to do with British Airways - y'know, numbers that made him feel good but which he'd never actually use. Despite the fact I'd shown him how to use the phone, for emergencies, he never did and we thought he couldn't grasp it.

Of course, there was a number marked 'Home' in there too. Again, for emergencies. And he's started using it. On Sunday he rang us three times. Monday night he rang. Yesterday he rang after we'd gone to bed.

I ask if he's homesick and he says no - he can be ringing about anything - but I suggest, after we've chatted a while, that he goes downstairs and finds someone to chat to in the kitchen or the living room. I don't like to think of him sitting in his bedroom alone for too long. And I'm not that keen on the idea of £15 of credit disappearing in three or four days.

But still, Biff ringing us up!

Biff becomes a New Man

2007-11-11T00:49:00.000-08:00

Ever since Biff told me, when he was about six and off for a trip out with his dad: 'You can stay at home and do the washing up', I've known he had the two of us very firmly in separate boxes. Dad's was marked Fun; Mum's was marked - oh, I don't know - Boring Stuff That Has To Be Done? Something like that? (And I'm not even going to mention the A word.) As he was firmly in the Fun box with his dad I knew he was never going to be a New Man. He's never made his bed, dried a pot (okay, maybe once, with very bad grace), or done anything around the house.

And yet, last night I saw before me a New Man. Not in the washing up sense but in that he'd not only succumbed to a haircut - he hasn't quite got the washing it thing yet - but he was also wearing jeans. He hasn't worn jeans since he was about eight, when we realised that the buttons and zips were too much of a challenge for his fingers when he needed a wee very quickly, and that - avert your eyes if you're sensitive - the wet marks from the numerous times he didn't quite make it were so much less obvious on plain black joggers. For me it had the added benefits that joggers don't need ironing and they're cheap, but all along we'd have much preferred him to wear jeans like other young lads. Anyway yesterday, there he was in his jeans - that he'd shopped for with a member of the home staff - and looking very proud of himself.

Last night was great - for the first time in I don't know how long, the four of us went out together and enjoyed ourselves. Okay, Bo's reaction was: 'It wasn't the most tragical evening ever.' I think that translates as, it was better than she expected. And the difference was Biff's temper. He just got angry once when a woman in the audience shouted very loudly - we'd gone to see a band in a pub - but it was okay. It really was an okay night.

Transition and Getting a Life

2007-11-06T01:06:00.000-08:00

The new issue of the Transition Information Network's newsletter, Getting a Life, is now ready and contains, as usual, a great mix of news and info. Will try and find time at the weekend to have a proper look. In the meantime I'm off to the DCSF website to order a copy of The Transition Guide - newly published guide to all things pertaining to transition. Will be interesting to compare the reality with the ideal.

Biff has brought home (ie to the home he now lives in) a letter about a possible trip to France or Spain for the sixthformers at his school. The home manager says he'll 'look into what funding's available'. Still seems weird to us that we aren't automatically expected to cough up for Biff's pleasures and entertainment. We'll pay if there's any danger of him otherwise missing the trip, but how nice to be last resort for funding rather than everyone's immediate thought.

Relax - DO do it

2007-11-02T07:47:00.001-07:00

Our local Parent and Carer's Council sometimes secures short-term funding to allow carers to indulge themselves a little - reflexology sessions, aromatherapy, facials. I'm not sure just how it works and take-up apparently isn't always as enthusiastic as you'd expect (maybe they just don't have time??), but what an excellent idea.

It got me thinking how, over the years I've become accustomed to relaxing in very short bursts. Relaxing with Biff around is like relaxing in the lava path of Mt Etna in a non-dormant phase, so the short bursts tended to take place when he was at school or out with a carer or in the calm after yet another storm. When he was little being taken out by his dad allowed me at least to get on with the ironing - I don't ask for much - and sometimes just an empty house can in itself be relaxing - but once Biff started getting both big and physical, there was always a fear that Barney would come home damaged, so that clouded the enjoyment of the peace and quiet a bit. Well, a lot.

Something I've always done for relaxation is play the piano, very badly. You'd probably be hard-pressed to find anyone else who plays the piano quite as badly and yet who still actually plays. A piano's a wonderful thing. (Almost as wonderful as a public library - that wonderful.) You can bash away on the notes and let all that pent-up emotion out, or you can soothe your aching heart or your frazzled nerves with the odd gentler tune. I used to play Peace, Perfect Peace after a tricky/difficult/downright dangerous half hour with Biff, and Barney would occasionally stand in the doorway with a wry smile and say, 'You haven't lost your sense of humour then?' It worked for me.

What else could you do? I'm thinking of trying meditation. That's another thing you can do in short bursts - ten minutes, fifteen, whatever. I heard on the news that David Lynch had advocated using it in schools to soothe teenage angst and anger - sounds good to me.

Whatever. Carers, parents and probably everyone, we all need some relaxation, but it doesn't have to be a week-long holiday or even a weekend away without the children (what's one of those? - just remind me...). Making the most of the little pockets of respite you might find through the day might not be as great as a week in the Italian Lakes but, y'know, it's something.

War of the Words

2007-11-01T14:31:00.000-07:00

Bo has a sparky little friend - we'll call her Belle. To say Belle is politically incorrect would be understating the case. She's chirpy and streetwise and she makes me laugh, but she's not always sensitive. So faced with someone you liked, who used the term 'foot-dragging window-licker', what would you do? Keep schtum? Let rip?
I've never been known to keep quiet even when it might possibly be a very good idea indeed, so I pointed out to Belle that my son drags his foot and that, tho' she might not realise it, it's people like Biff that the expression relates to. Cue awkward silence.
Hmmm, I've wondered since whether I should've kept my mouth shut. Did I use politically correct language myself as a young teenager or did I use those terms I now think horrible, like 'spaz' and 'mongol'? On the other hand, if someone had pointed out to me what I was actually saying with those terms, would I have stopped? Who knows? Maybe insensitive language is something we just have to grow out of. And discretion something we have to grow into.

Autism or not?

2007-10-26T09:07:00.000-07:00

Last weekend one of the papers featured an article about Emma Noble and her autistic son, who she's bringing up alone after she split from James Major. Usually I hate these kind of articles - they're nearly always about people who've realised that they can, after all, love their toddler with Down's (or whatever) and inviting the rest of the world to exclaim at their wonderfulness. You love your child despite their being disabled/less than perfect/not to the standard you'd ordered? My, how great are you?! I know, I know, call me a crabby, twisted old thing, but sometimes I wish they'd wait till the child was adolescent, or awake all night and every night, or kicking them in the shins for looking at them wrong, or something, before they start telling us how great everything is. And they should try to avoid making those of us who've struggled their way haphazardly through the same situation, feel bad. I love my son too, but sometimes it's a gritted teeth 'I'll love you if it kills me' sort of feeling.

Anyway, Emma Noble. She impressed me; I don't know why. She seemed so patient and smashing with her son. And she just seemed to be getting on with it. Not looking for plaudits.
One thing that stayed with me was that she said her little boy doesn't like opening presents - he gets an idea of what it will be in his head and then, when it turns out to be something different, he can't cope. This was so much like Biff, not with presents especially, but in life generally. He always has an idea - a very firm idea - in his head of what will happen and then if it doesn't, he can't cope. He's talked recently about being confused when things like this happen.
I can't wait for this autism check they're going to run...

(In a similar vein, at uni today the tutor was talking about autistic students and how they get obsessions and bring the lesson round to that obsession as often as possible. Again, a direct mirror of Biff's behaviour. Who but an autistic child with a transport obsession, could see a shoal of fish on TV and say: Look at all those fish! If they were all getting on the bus as a group, that'd be a really long bus ticket, wouldn't it?)

We had the 6 week review meeting last week, during which the home's director mentioned there'd been one or two 'verbal incidents'. Nothing major, but because of this they're going to delay the psychological stuff until they know whether this behaviour's going to develop into anything more serious. In a way the home management seem to welcome the opportunity to set boundaries and let Biff know what's acceptable and what's not.

Sabotage!

2007-10-23T23:39:00.000-07:00

This is what Biff's guilty of, every time we try to bring him and Bo together. It happened again this weekend on a few days away - the four of us and Bo's friend. We'd just persuaded Bo that maybe she should give him another chance and that really he loves her but is unable to behave like other people etc. She tried to adjust her thinking, then two minutes later Biff stole the Flake out of her 99. This would probably have been irritating at most, except that when her dad tried to retrieve it Biff thumped him. Hard. Bo turned on me furiously and started a long tirade covering stuff like never daring to ask her again to give him another chance because he's a selfish little...etc, etc.

We were away four days. Maybe a day and a half were okayish, altho' even on the way there I had to sit in the back with the girls as Biff was being a pest. And he's eighteen, not eight! By the second evening the three of us were tearing our hair out and in our usual state of high anxiety when Barney took him out alone. Would they return unscathed?

What happened most of the time, and what we expected and planned for I suppose, was that Bo and her friend (not sure what she made of it all) spent their time together, either in their bedroom or out, and we spent our time with Biff. Not a restful weekend but then, we've had worse.

What's sad is that Biff had a brilliant time, and cried when we dropped him back at the home because he misses us. We've accepted that his mind and emotions work completely differently from most people's, but we're still struggling to come to terms with the gulf between how he behaves and what he feels. Probably he struggles with it too.

It's good to talk

2007-10-10T23:54:00.000-07:00

We had a meeting last night with the home's new manager and its director - one of a series of meetings booked at the moment; there's another next week with the adult services key worker to review the placement and then next month there's Biff's annual review at school, which both us as parents and the home staff will attend.

Anyway, last night. This was a good and a pretty reassuring meeting. The director was able to explain some of the stuff that we'd heard and they turned out to be innocent misunderstandings or simply getting half a tale. An example would be that home staff were proposing to take Biff swimming on Mondays when he normally goes to his social night at the pub. It seemed weird to us but it turns out to be because Biff has struck up a friendship with another resident who's pretty disabled and so needs to go swimming on the 'disabled swimming night' which locally is Mondays. So, they'd decided to do the two activities alternate weeks. The problem wasn't what they were doing but that they hadn't told us. The significant thing here is Biff's age and the fact that until a few weeks ago he was living with us. We worry about him, and they've offered to tell us much more about what's going on in future. They managed to do this without making us feel like complete nattercans and worryworts, so that was a bonus.

The new manager reiterated that Biff settles quickly once we've gone and Barney seems more reassured by this than he has in the past. They also said there'd been one or two little 'verbal incidents' when they'd had to tell him that his behaviour wasn't acceptable. This was seen as good as it means both that he's feeling more at home there, and because it gives them an opportunity to set boundaries.

So, all fairly positive at the moment. All except for the poor guinea pig's health which doesn't seem to be improving. I was expecting him to bounce the weight back on once he was home and the mites had gone, but his bones are still sticking out so I'm eager for the next visit to the vet's in a few days time.

Voyager returns home

2007-10-04T02:39:00.000-07:00

Not Biff tho'!

Sadly the poor guinea pig was getting thinner and thinner from a mixture of stress and mites and has had to give up his supposedly carefree life in the home's garden for a less than joyous return to a scruffy cage in our hallway. The staff at the home were apologetic but said Biff really wasn't interested in the poor little thing except to squeeze him mercilessly and make him sqeak. Sounds familiar.

To give you an idea of what a bad way this animal's in...he's nearly bald down one side. His exposed skin has sores where he's scratched. He's half the size he was (altho' I know he's been fed, as kinder souls than Biff saw to that). He whines and shivers most of the time.
'What are all these lumps he's got?' I asked the vet, suspecting tumours.
'That one's his pelvis,' came the reply.

Still, at the time we told Biff he was moving out, it gave him some temporary comfort to think his pet was going with him. We maybe sacrificed the animal's welfare to Biff's in leaving him there at Biff's mercy for a little while too long but now we'll nurse him back to health and get all the locks and bolts ready for the cage for when Biff comes on a visit.

While we were there collecting the g.p. a member of staff expressed her surprise at how Biff had behaved the day he fizzed up over not going to the airport.
'He seemed to grow...and his face...! We'd never seen him behave like that before.'
Well, they have now. And that, after all, is the reason he's been placed in a home with the higher staffing levels.

Courtesy of the local Parent Council...

2007-09-30T01:08:00.000-07:00

...a couple of resources on transition:

Keys to Citizenship by Simon Duffy. I wasn't 100% sure of the author's name on the newsletter illustration, which is why and how I found out that if you Google "Keys to Citizenship" "Simon Duffy" you get several other useful looking references. Only follow that up if you want your whole week eaten away by the computer.

http://www.helensandersonassociates.co.uk/

http://www.inclusive-solutions.com/

I haven't looked at these two in depth, but they were PC-recommended so I'm willing to take a risk. (I'm such a little devil...)

And then the wheels came off?

2007-09-23T00:58:00.000-07:00

Or at least the axle started creaking, or something...

Yesterday was a bad day and family dynamics are, well, not very dynamic at the moment.

I persuaded Bo, very much against her inclinations, to accompany us when we took Biff out for lunch and into a nearby town to spend some birthday tokens. In the event, he started being difficult almost immediately because he'd persuaded himself that we'd be going to the airport. Bo cried; home staff had to come out and intervene; things weren't looking good. Bo never wants to see him again.

Then he told us that in future he'd only be going on his Monday nights out on alternate weeks altho' we'd stressed to staff that these nights were important to him and were assured they'd continue. On the other Mondays he'll be going swimming, which he also loves, but why not go swimming another night?

No one at the home has said anything to us about this or other changes and events that have happened. When we visit they're friendly and welcoming but conversation is limited to Where are we going? etc. We get the feeling only the Director has any power. In a way this is good insofar as she runs a tight ship and would probably stamp out any problems very fast, but on the other hand we get the feeling the rest of the staff can't sneeze without authorisation.

Barney was upset about the Monday nights as it means he can't see as much of Biff as he'd like - he can't just call down at the pub knowing he'll be there on the Monday - with shifts etc it means big gaps between the less formal and probably more successful weekday meetings. He was also upset that Biff cried again when we left and he feels, as I do, out of the loop completely with Biff's life. And he misses him. The house is very quiet and he's lost his constant companion of the last few years. There's even been talk, albeit mild, on the lines of 'You talked me into this...' My usually very sunny natured husband is suddenly pretty depressed.

The other problem is that there's little contact from Adult Sevices - well, there's no contact - so no point approaching them with any concerns. Biff's case is very much on the back burner, it seems.

Have emailed the Director with our concerns and will see what she says. Certainly I still think it's an excellent home with lovely staff and a good regime but I think we need to stress that we want to be more involved. Maybe a daily diary that we could consult on visits would be helpful, but I have no idea what usual practice is so not sure whether to suggest it. There's such a huge difference between someone older moving in as a new resident and someone like Biff coming straight from the family home at 18. Still I'm not sure what legal clout we have or whether we have any right to know stuff that's going on - Biff's an adult after all.

Ho hum.

Out of the loop

2007-09-21T05:49:00.000-07:00

Four weeks after Biff moved, our request to take him out on Saturday still has to be 'run by' the Director in charge of his home before it can be approved. No news apparently is good news - if we don't hear anything it means the redoubtable (and actually, pretty okay) Director has, like the man from Del Monte, said yes.

We're living in half-and-half land...

...when transport services have trouble with the bus bringing Biff home they ring us.

...his annual paperwork regarding his school review was sent to us in advance from school by post (and I'm grateful for it).

...on the other hand, his recent visit to the hospital consultant with staff from the home, went unreported. The consultant is sending us a letter, allegedly, but so far we've heard nothing.

...I still haven't heard from the Adult Services key worker.

...we've been advised by the home, politely, to ring them in advance if we're going to be at one of the pubs Biff's likely to visit during the week.

Feels like we have to give an awful lot of thought to doing the right thing, passing the right stuff on and remembering to ask about stuff that maybe should've been passed on and hasn't been.

Adult Services - is this what it's like then?

2007-09-13T23:47:00.000-07:00

It's several weeks since I contacted Adult Services with a couple of email queries, several weeks since they sent me a report to sign which I said I didn't want to sign till I'd had a reply about the finance, and a couple of weeks since the key worker returned from holiday, so in that time she's met with the home staff either once or twice - she meets them once a week for the first six weeks. But still no reply or contact. The Children's Services social worker, on the other hand, who's no longer on the case, has been to see Biff once, is intending to go see him again and has rung me a couple of times to make sure all's going well and to tell us to ring her if there's a problem or we need to talk.

Now, I don't know whether this social worker is exceptional or whether this is indicative of the difference between Children's and Adult Services. I suspect the latter, or maybe a mix of the two. Obviously there will be fewer children needing services than adults, so there's a smaller client base for Children's Services to deal with, and some of the adults will be settled with (hopefully) happy and fulfilled lives and won't need any intervention, but also it seems like there aren't sufficient numbers of staff allocated to looking after the interests of the adults with disabilities to allow for them to do other than the absolutely essential. It's a bit sad - as though the state has fallen prey to the 'making a fuss of the cute ones' syndrome. I know it's not really that and that they want to direct the money and resources where it has most chance of making a longterm difference but maybe we've gone too far in that direction?

Reunion

2007-09-09T21:45:00.000-07:00

Biff nearly knocked Bo over in his enthusiam to give her the biggest hug of her life. This boy certainly loves his sister! We took him to the maze, ate a picnic, visited the pub and generally had a fine time. Apart from a little miscellaneous swearing and some other minor misdemeanours, all went well.
Until we left him again. We'd been advised to stay at the home with him for a while after we got back and that was fine with us. We'd taken him some more clothes and books, and we sorted his bedroom, said 'hi' to the guinea pig, met some more members of staff. Biff, with help, made us a cup of tea.
Just before we left, another resident let slip that Biff had 'cried his eyes out' when we left him the first time - not exactly the home's version, but I suppose they're looking longterm and assessing him for a more general response to the move, whereas I see him cry and want to gather him up and make it better. Anyway, he cried this time too. I'm hoping it gets easier as time goes on. We'll see.
Things should be more relaxed from now anyway, as we can now arrange to meet him at one of the two pubs he visits regularly for music and special needs nights.

The good, the bad and the uncommunicative

2007-09-06T23:58:00.000-07:00

We had a little note from Biff the other day saying, among other stuff, that he loved us and 'needed us', which sounded a curiously desperate term for a teenage boy to use. Made us all a bit sad altho' the home assures us he's happy. I wondered if the return to school might have hit him hard - going back to the home after school must've seemed very strange. Think I'll ring his teacher sometime soon. In the meantime, today is the day that officially we should be allowed to see Biff altho' there's been no word about it from the home staff. I'll contact them too. We're not sure how to play this. We could take him with us to see friends on Saturday, but would that be a good idea? We don't know. Should we just go to visit him? Should we take him out on Sunday, the four of us?

No word from the Adult Services key worker, despite me waiting for a reply to an email before I sign the report they've sent me. Lovely social worker has now left the case, as she worked in Children's Services. So I think we've been abandoned. And to be fair it was inevitable - they're busy people and Biff's been placed.

One lovely thing was that the other night we heard Bo singing in her bedroom - this is a sound I can't ever remember hearing before.

A different experience of transition

2007-09-02T23:18:00.001-07:00

Have spoken to Biff on the phone. He sounds okay - happy, even - altho' the poor guinea pig has lost a claw and Biff has admitted to squeezing him, so the placement's not effecting a total change of personality.

But with Biff stable for a while, I thought I'd mention the son of a friend of a friend (in a neighbouring authority) who's getting no help at all on transition. This is a lad currently in care and not judged safe enough to visit his parents or go to college alone (altho' he's brighter academically than Biff). I don't know all the details of the case but I do know that, come his eighteenth birthday, there's to be no further help. He's not deemed a severe enough case. So, in the space of 24 hours he changes from someone who needs constant support to someone who can live alone, sort out his college work, employment and everything else that makes up an adult life. How will he cope?

I'm trying to work out why or how this would happen. Maybe the authority has a less fluid approach to Adult Services finance. Maybe the staff are just plonkers. Maybe Childrens' Services and Adult Services assessments on him came out totally different. I don't know, but it's worrying, isn't it?

Settling in

2007-08-31T01:35:00.000-07:00

Nothing much to report. We ring the home every day and get good reports about Biff- what he's done, how he's enjoying the various activities, that he asks about seeing us now and then but they distract him. We did ask if we could take him out next Monday night but were told no, we had to wait the full two weeks. I got the impression the manager was quite happy about it but the owner wasn't. Initial impression they gave of 'things aren't set in stone' rapidly disintergrating, but still...
Have also found that the manager, who we like, is moving on soon, so feel a bit sad about that.

Still trying to get final details of where to pay the cheques to etc. Finance has been a cloudy issue from the start, altho' seeing as it's the one part in all this that doesn't involve emotions it should be the easiest to deal with. Just tell me how to pay and what to pay and I'll see to it.

The social worker went to visit Biff yesterday and was well impressed with the home and with how happy Biff seemed. We also yesterday had a phone call from Biff's support worker when he goes to the railways - he hadn't been told that the home would be supporting him in future, so that was a little blip. But generally everything's gone pretty smoothly.

Phew.

EIGHTEEN YEAR OLD MAN, GSOH, WLTM...

2007-08-26T02:17:00.000-07:00

The home reports that Biff slept well (which is verging on unbelievable) and that there had been no more tears after we left. Long may it continue. They're keeping him busy.

Meanwhile I've contacted Social Services with a view to getting the Person Centred Plan reactivated. Biff has been saying in the last few days that what he'd really like is to live in a house with a girlfriend, so I'd like that documenting somewhere, as something for him to work towards. At present his idea is almost that a girlfriend can be chosen from within the family or from the supermarket shelves or whatever, but we can work on that. Long-term it'd be lovely if he could have the same kind of relationship non-disabled people enjoy, and if the home and we can help him towards that, so much the better.

It's all over now, baby blue

2007-08-25T00:21:00.000-07:00

Barney's gone off to the Challenge Cup Final this weekend, which is a good thing as he's pretty distraught at losing his pal. Barney was never as convinced as I was that the move was a (long-term) good thing, and now he's lost. In time, it'll probably be okay because we'll see lots of Biff but, just for now, with the memory of Biff's crumpled little face fresh in our minds, I don't think any of us can really look that far ahead. Things are pretty subdued around here.

Anyway, Biff keeps surprising me - the social worker had offered to come along when we took Biff last night to start his new life and I'd said it was probably better she didn't, reasoning that it would make a bigger deal of it. Secretly I also felt that as a family we were all becoming a bit too dependent on 'professionals'. Anyway, who was Biff asking for yesterday evening? The social worker! He thought he'd feel better if she was there.

The staff at the home - and the residents, come to that - were really kind. The manager wasn't there, probably another 'keeping it low-key' tactic. Or maybe he just wanted Friday night with his family. We'd taken the poor guinea pig along and they kept him in the carry case until we said our goodbyes so that, at that point, there was the job of transporting him to the new hutch to keep Biff occupied. Two or three of the residents, who are all pretty new themselves, have said they'll look after Biff. And there's a birthday party today which he'll probably enjoy.

In the meantime, it's worth mentioning that a move like this is pretty expensive, even tho' most of the fees are paid for by Social Services. In our case, we've given Biff a contribution to the cost of his laptop, bought him new clothes and stuff, bought the hutch and run for the guinea pig and now we're being asked for a 'one-off' fee of nearly £200 for upgrading the home's internet access to wireless so Biff can access it. Beware, the paying never ends.

There's (surprise, surprise) an emotional cost too, which also, I imagine, never ends and which I'm not even going to go into. Well, not much. Any fool can imagine how it feels for the average family to send one of their children to a residential home, not wanting to do it but, at the same time, unable to carry on as before. Likely as not, in most cases (as in ours), the young person themselves won't want to go. You'll feel you've betrayed them, that maybe you could've carried on if you'd just tried harder and that you've failed. And you'll miss them. A lot. You'll wonder if they'd have been a different kind of person - one you could cope with - if you'd been a better parent.

There's all sorts of layers of emotion on top of other layers. In our case tho' there was no easy answer to the family situation we were in, we had another child to think about and we had to give this a go. So I keep telling myself anyway. It's going to be fine, but I'll never feel proud of myself for sending my child somewhere away from the family when he didn't want to go. And I haven't even started on the emotional cost to Biff.

Just wondering how long I should leave it, before ringing to check on him...

Getting it wrong

2007-08-22T23:33:00.000-07:00

After another positive visit on Tuesday night, yesterday it all fell apart. Two members of staff from the home came to the house to meet Biff in his home environment - unfortunately he didn't arrive home till about an hour after they got there so we were stringing out the pleasantries a bit...but when he got here they were lovely, interested in him, telling him what they do at the home, etc.

After they'd gone, I managed, unwisely, to use the move as a threat when Biff tried to harm one of the guinea pigs - those animals are so protected and still he gets through the cordons of locks, tape, chicken wire etc. That boy could steal the crown jewels if there was a small furry animal in with them. Anyway, I said if he didn't stop he'd move to the home there and then. How psychologically flawed is that then? Just totally, or more than that? Bit of a bad-tempered night all round really. And I was knackered after a really bad previous night, and not in a mood to be patient. (I'm still waiting for someone to give me advice on how to deal with a strapping young man who's intent on making a guinea pig squeal - anything slow and calm means more pain for the animal, so a gentlish whack seems the best option...)

When it was time for him to get into bed he started crying about the move and didn't stop for ages. Very, very sad to see him in such obvious and real distress. And I know how he feels. In his shoes I wouldn't think it was an adventure either. I'd be feeling exactly the same as he is - rejected and scared. A couple of days ago he asked if we could take him to a party he's going to within the next two weeks - the period we've been advised not to visit him. When I said someone from the home would take him instead, he said: 'Come on, you can't abandon me completely'. And it does feel like we're abandoning him. So it's pretty hard to be convincing. But I'm trying, most of the time.

The Visit

2007-08-20T23:14:00.000-07:00

We went to the home last night for tea, where they had Biff's requested meal - fish and chips. The other residents are a lively, chatty bunch and I think he has a good chance of fitting in well. The atmosphere is more family home than institution.

After an hour or so we went home, where after a while, he said: 'I don't want to live there with all those disabled people.'

Making it bearable

2007-08-19T23:29:00.000-07:00

If you ever have to give your child devastating news, make sure they're not going to have much time to dwell on it. So far, Biff has been out on his railway volunteering, out to the pictures with the local Mencap group, to the pub with his dad two nights and to the park. This week he's on the summer scheme. Tonight he's going to the home for his tea. A full diary by anyone's standards, and, in a practical way, it's helping.

It's so hard to know what he's thinking. On one level he's very open about his feelings, but he hasn't always understood as you thought he had. Yesterday he asked: 'Will there be a mummy and daddy there?' and 'Can I come back here when you get old and need looking after?'

Without putting it in quite the same terminology, it's clear he doesn't want to move to what he regards as 'a home' in the way of an institution. Neither would I. I'm hoping the small size of this place, the good quality activities, and great staff and ethos will help once he's there. On Saturday he received in the post an invitation to a birthday party to be held at the home next weekend. A nice touch, I thought.

He must feel so fearful though. We're pretty fearful too and we hold all the cards; he has no control and he's going to a strange place. Forever.

The deed is done

2007-08-18T02:14:00.000-07:00

Yesterday we told Biff that he's moving out next Friday. I'd arranged a fresh prescription of the weak tranquillising syrup we used for the holiday and the social worker came round as support. In fact, she told him (rather than us), and more or less took responsibility for the decision, which deflected some of Biff's anger from us, allowing us to offer support without being kicked.

In fact, he initially took it better than we expected, perhaps because we chose the ensuing moments to tell him his new laptop had arrived that morning. He was tearful at times and said several hundred times that he doesn't want to move out, but we didn't get the angry reaction or even as many tears as we'd expected. He slept well.

This morning is a different matter tho' and he's getting cross, telling me to 'get on that phone and tell them I'm not going'. We're being relentlessly upbeat and keep explaining the upside of things to him and how people do move out when they become adults. I don't believe a word of it myself even - he could stay in other circumstances. Most touching for me was when he asked this morning: 'Can I stay if I don't cause any more arguments?'

We'll see how the rest of the week goes. Next major step is tea at the home on Monday - it's pretty crucial that this goes well.

Being swept along...

2007-08-15T14:37:00.000-07:00

We had a meeting today with the home owners and manager, and social worker, at which we were advised to tell Biff the truth about him moving out sooner rather than later. This Friday was suggested.

I don't like keeping him in the dark but at the same time it means a whole week of anxiety and distress for him. The plan is then that he'll go to the home for tea on Monday and probably go over there several evenings next week. By next Friday he'll be familiar with the home, his room and the staff and residents. Good plan. I'm hoping he's going to surprise us, but my gut feeling is that he'll still be homesick several months down the line.

Finally got an answer of sorts about the finance. Biff should end up with a weekly allowance of about £25 to pay for clothes, and sundries. This isn't much and we'll have to see how it goes. Luckily he's not interested in clothes...

I'm a bit fed up that the money situation's been left so unclear for so long. Everything else has been dealt with very professionally but the finance aspect has been shrouded in mystery. Maybe there's some sensitivity about the home divulging what it takes and makes? I don't know, but I do think there should be an information sheet setting out what will happen in the average case to help parents work out early on how much their young person is likely to require from the depleted family budget in their 'independent' future. While we're working - and particularly if I can now work more hours - subsidising Biff's activities should be manageable, but for some families it won't be, and with Barney retiring (he hopes) next year, things could get tricky.

Anyway, I need to write to the benefits people about starting to send Biff's money to the home's account rather than mine. And to do several other things, like passing on letters about appointments and the party Biff's going to on the 29th.

All feels very strange.

It all ADDs up

2007-08-12T22:41:00.000-07:00

I'm shocking for looking up conditions and then assigning them to people I know, to explain away their quirks of character. I know this is not always helpful. But, I've been thinking for a long time that Biff exhibits a lot of the symptoms of ADD and wonder if, like the 'probably autism' situation, it's been overlooked because the learning disability has always been used as a cover-all explanation for all his behaviours. I read once about children who have both autism and Down's, and how hard it is for the parents to get their children's problems taken seriously by doctors who can only see a child with a known condition and don't want to investigate further. And I don't think there's any doubt that the problem with Biff's foot and his unclear speech would've been dealt with in a more timely manner if he hadn't been learning disabled. Who knows what lurks beneath the veneer of that very vague half-diagnosis of cerebral atrophy?

The reason it's come back to me just now - besides the fact that I've just scored about 85% on a ADD diagnosis quiz (admittedly one which wants to sell me a miracle cure of some sort) - is that a few days ago we picked Bo up from her friend's house where she'd been staying for three nights. Biff hates change and doesn't like Bo going away, but had coped manfully.
On the way home he variously flicked her (which hurts more than it sounds like), said 'Hiya Bo' about six thousand times, and carried out all his various other Bo-baiting strategies as he does constantly. Eventually, having answered him a couple of times, tried ignoring him, encouraging him to listen to his music, etc, she got really fed up, and he was roundly told off by both me and Bo. At which point he shouted to her: 'Don't you know how much I've missed you?'
What??
This isn't a boy who likes annoying his sister because he doesn't like her; he loves her to bits. So there's another explanation. It's the only kind of social contact he can manage? He needs a reaction from her? It's a compulsion? Or what?

The point I think, once again, is that I really wish we'd done more to get more help earlier. I wish we hadn't been so ready to listen to those 'experts' who told us we had no problems. Intervention earlier would've helped us understand him and consequently to parent in a more appropriate manner, ADD or no ADD. It's too late when they're eighteen.

Connexions again

2007-08-10T05:24:00.000-07:00

Okay, the role of the Connexions Personal Advisor in transition...

The Mencap Info sheet on transition sets out what they do in terms of each school year:

Year 9: the Connexions Personal Adviser (PA) must be invited to the Transition Review Meeting, along with the young person, parents, and any other people involved.
Year 10: the school and PA work together to look at possible future options.
Year 11: If the young person is leaving school, the PA will arrange an assessment of their future needs.
After Year 11: 'You should have regular review meetings with your Personal Adviser or key worker.'

The Connexions Service may stop working with the young person at age 19, but in the case of disabled young people can continue till they're 25 years old.

Meanwhile, dfes.gov.uk tells us that: 'The attendance of the Connexions Personal Adviser is critical to the [transition] process.'

The role of the PA seems to be to seek out information, liaise with other professionals involved, attend meetings, counsel and support the young people, and to discuss their work and education options with them.

I've come to the conclusion that if the young person already has a key worker within social services then probably the role of the Connexions adviser isn't that critical. They might draw a few options out of the hat that your social worker might not know about, but their work will be more behind the scenes.

On the other hand, if your young person isn't known to social services, maybe in effect the PA becomes your key worker and then, as in every case, it'll depend on the energy and enthusiasm they put into their job as to the kind of advice and support you get.

The probably autistic boy on the way to the park

2007-08-09T10:02:00.001-07:00

Biff routinely speaks to me in a way which suggests he's the adult and I'm the child. Such phrases as:
'Get yourself here now'
'Do as you're told'
and the particularly unpleasant:
'Get your backside over here'
are frequently lobbed in my direction. He's so used to a day out with a supporter who's there to cater for his every whim that he forgets that there's a difference between a paid supporter (who he's always polite to anyway) and his mother. How would he know and why would he care anyway?

These ways of speaking pale into insignificance tho' beside the venomous tirades he aims at people doing anything which causes him distress. Distress he can hide when he's with anyone else, seemingly.

Today we went to a local town on the train. On the train already was an unfriendly woman with a dog sprawled across the aisle. She wasn't best pleased that she had to move the dog to accommodate Biff's fear. He wasn't best pleased with her dog being in the way. Things weren't shaping up well.
Biff chose well in advance the door we would get off from. Just before the station, the woman got up and advanced past us to OUR DOOR with her dog. Biff, even more disgruntled, chose another door.
By the time she walked past us again on the station platform he was hurling abuse after her about her bloody dog and the way she kept f***ing walking past us and just what he was going to do to her if she did it again. He slavered, as he does, and seemed pretty cross, I'd say. She was immovable. I didn't like her much, but I suppose that's by the way, and I suggested he should calm down and get a grip, or words to that effect.
Before we left the station we both visited the toilets. Biff joined me in the general waiting room where I was waiting for someone I took to be the cleaner to finish their very long ablutions in the one and only ladies' toilet. He's champing at the bit to get in that park. Didn't I know that was why we'd gone? Get over here and take me to that park now!
Anyway, you can't not go to the loo however impatient someone is, so we waited. When the same stony-faced woman walked out of that cubicle with the dog trailing behind her I thought he was going to explode. There was definitely steam in the vicinity of his ears.

In vain I explain to him that he's grown up now and can't behave like this to people, that one day someone will thump him, that this is why I don't take him out much anymore, etc. Behaviour which bystanders might find cute in a six year old, is scary to them in a stocky young man like Biff. And with transition to adulthood comes the need to behave in more socially acceptable ways. Biff's emotions still have a lot of maturing to do. Maybe living with other people away from the home enviroment will help. Maybe the psychological work they'll do with him once he's moved will help. We'll see.

Medicine man

2007-08-07T00:57:00.000-07:00

There's a lot of controversy over drugs for young people with challenging behaviour. As no one, until recently, has believed we had any problems with Biff's behaviour, it's not a debate we've had to enter into on a personal level. Until now.

We recently went on our first family holiday to involve flying. This was part of Biff's 18th birthday treats and he was looking forward to it. At least he was until he remembered how much noise aeroplanes make. And how big they are, and how fast they go. Then he got worried.

Keen to avoid a refusal at the airport, or worse, a big scene on the plane itself, we took the social worker's advice and asked the doctor for some calming medicine. I was dubious this stuff would work as it seemed designed for administering to a two year old (small bottle with a plastic syringe??), but Biff took a couple of doses before, and on, the plane and it seemed to take the edge off his anxiety.

Since then we've used it twice in difficult situations to calm Biff down - once when he was acting really manic and the other when he was very angry and in danger of damaging himself, the house or his dad. On both occasions I've told him what I was going to do, filled the syringe and given it to him to take. And both times, despite his mood, he's taken it. He knows that it helps him.

We haven't much left and it'll be out of its use-by date soon so we shan't be using it much longer. And obviously if I was intending to use it longterm I'd check more stringently on side effects etc. But for this short time, it's been a help. Not a miracle cure, not a magic wand, but certainly a help.

From yesterday's Guardian

2007-08-04T05:31:00.000-07:00

http://society.guardian.co.uk/localgovt/news/0,,2140880,00.html

Trafford Council have to pay compensation of nearly £100,000 to the family of a young disabled woman who was left, on transition to adult services, without a suitable placement.

Off at a tangent

2007-07-30T08:06:00.000-07:00

Not where I'm going but where I've been, if you see what I mean.

This 'transition' blog has turned into a 'Sob, sob, my learning disabled son's leaving home' type record of events. I suppose any blog can only catalogue stuff that happens and reactions to it, but it seems that along the way other aspects of transition, the Person Centred Plan and the work and education elements became lost.

We know what happened about the PCP - nothing, basically. For once, someone other than me fell at the first fence on that one.

And it seems like for students with special needs the education issue needs different timing from the rest of the transition stuff. Students might choose to join the sixth form of a mainstream secondary, in which case they need to be thinking about that well before they reach sixteen. If they might be going to residential college, which depends on local provision and funding, then they again need to be thinking about that well before the year they leave school. Most of the residential colleges for students with special needs have waiting lists of two or three years. Alternatively, they might choose to go to the local college if suitable courses are on offer there. In this case, because special high school students have an extra year of fulltime education (three sixth form years, rather than two) the decisions will maybe be made a year later than usual.

It all serves to make the transition process unwieldy and strung out. It officially starts I think in school year nine, and then it's a bumpy ride for a few years getting all sorts of life issues sorted till hopefully the young person is a fully fledged adult with ideas about where he wants his life to be headed. I think I can see the advantage now of a dedicated transition department. Just at the time the young person needs people around him who know him and his interests, he's hived off to some other department and, with all the other changes going on in his life, made to get to know new people, places and systems.

Connexions are meant to have a significant role in transition. But tell me one person who actually knows what Connexions do or are for, and I'll plait sawdust, as Barney would say. More on Connexions when I've found out about them. (Our experience of them so far hasn't been encouraging.)

Today's quote:

2007-07-28T05:24:00.000-07:00

'Home is as much an institution as any other.'

This was repeated to me by my brother when I mentioned that Biff's leaving us in a short while for a seven-bedded house with staff.

I suppose it's true; wherever Biff lives there's always going to be limitations on what he's allowed to do. There'll always be rules. He can't always do what he wants here at home anymore than he will be able to at the new place. The difference is that they'll have more resources to cope, so I hope he'll be better catered for.

He's still unaware, and I'm still mentioning with increasing frequency that young people move out when they reach eighteen. He's not convinced.

We're all going on a ...Part II

2007-07-22T20:19:00.000-07:00

I realised too late: we're completely mad to undertake this. We're setting off abroad with a family member we can't control or expect reasonable behaviour from, with only a small amount of tranquillising stuff between us and complete disaster. Why didn't we think earlier of taking a supporter or learning a few restraining techniques? Because we always think we can manage? Because we're latching on too late to the idea that Biff can't be expected to behave as tho' he's not learning disabled and emotionally immature and scarily volatile when he is? Or because we're stupid?

Whatever the reason, Bo's taking the brunt again. Last night she sobbed for ages because she's dreading the next few days. All the cuddling and soothing inthe world isn't going to dispel her memories of previous 'holidays' or Biff's erratic behaviour in recent years.

Off to do a little cosmic ordering for a peaceful week before the rest of the family get up.

The Big Day

2007-07-21T23:30:00.000-07:00

This is the day Biff officially joins Adult Services - his eighteenth birthday! We've had the party, we've booked the celebratory holiday, we've piled the presents high in readiness for his uncharacteristic late rising.

I get the impression in some authorities there's a sudden change in supporting personnel at this point. In others there's a transition department which oversees the whole process. Locally we change from Children's Services to Adults immediately from the point of view of funding etc and in all other official areas, but the social worker, who's been great, has said she'll stay around until after Biff's move to help in any way she can.

Off on holiday for five days tomorrow.

A recommendation

2007-07-19T07:11:00.000-07:00

Just this:

The Selfish Pig's Guide to Caring by Hugh Marriott, published in 2003 by Polperro Heritage Press (ISBN - 0954423313).

Very down to earth book for carers of all sorts and all ages. Not packed with practical information - you need other books for that - but good at making you feel better about yourself as a carer.

A plus and a minus

2007-07-17T02:25:00.000-07:00

A polite phone call sorted out the summer scheme problem - still not sure why they'd changed it but it didn't seem a big deal to them to alter the days Biff'd been given, so everything's back on course for the summer.

Unfortunately, I've now got a really painful back - I'm guessing at sciatica, but what do I know? - which is stopping me from running to rescue Bo when Biff's bothering her. I think it was a major concession to my condition this morning when Biff didn't insist on me putting his socks on for him. He wore the ones he wore yesterday and all night instead...

Tether, end of

2007-07-14T07:03:00.000-07:00

It's horrible having something dangled in front of you and then taken away. And I should know by now not to count chickens, even if they're all lined up in a row just waiting for your pointing finger...

I'd been congratulating myself on the summer coming up, sure that I could cope with the fairly small number of days I'd have Biff all to myself. I can work around his moods pre- and post- activities, but if someone else takes him out for a part of the day that helps enormously.
In a nutshell, (thank God, eh?), the local charity aimed mostly at post-19 provision is running a scheme over the summer and had assured me that I could have the two days on each of two particular weeks that I'd asked for. The lady I spoke to was so sure about this that it's in my diary and I've arranged other stuff around it. I knew for definite - or thought I did - exactly which days Biff's entertainment needs were catered for. I was feeling pretty cool about the holiday; it was going to be manageable.

This morning I got a letter from them, telling me that he could have three days altogether, and they're three totally different days from those agreed and are no help to me at all as I already have him on the Mencap scheme for that period. Cue panic. Quite a big panic.

Of course, it's Saturday so I can't ring and check whether it's a simple mistake or whether this is correct as it stands. It may be that the activities were so oversubscribed that they've just had to do the best they could for people. In which case, oh dear.

You know what it's like...

2007-07-11T23:48:00.000-07:00

...you think you'll just post a couple of website addresses. Then you think you'd better just check them out first and suddenly, what with all that linking and reading other people's blog entries, it's an hour later, you're still in your dressing gown and in need of a third cup of coffee. Even tho' you know that third cup always gives you a headache. Anyway, if the living room doesn't get painted today it's not my fault, is what I'm saying.

So, websites...these three are disability-related rather than transition-related, but still useful and interesting (hence no breakfast yet). The NAS one in particular has a couple of features on transition at present:

http://www.disabilitynow.org.uk/ - really good for straight news and info.
www.bbc.co.uk/ouch - magazine of the BBC's Ouch! programme. Has an active blog and lots of info.
http://www.nas.org.uk/ - National Autistic Society - use the Information Shortcuts for the section aimed at parents.

Off for my bath now.

Meetings about meetings...

2007-07-11T10:27:00.000-07:00

Another meeting today at the respite home. This was ostensibly a 'Looked After Children' meeting where the success or otherwise of the short breaks are discussed. With transition so far advanced of course it became another transition meeting. I'm not sure I could distinguish it from one or two others we've had, altho' that sounds more cynical than I feel - people are working very hard to make Biff's transition as painless as possible for both Biff and the rest of the family.

The social worker offered to be there when we told Biff that he's moving out. Can't decide about this - will her presence make more of a big deal of it? (Ok, it's a pretty major deal all on its own...) Or will it minimise the chances of Biff fizzing up? (In which case, it might be better if she moves in for a few nights.) We've decided, I think, on a date towards the end of August and that we should tell him a couple of days before that.

Something about Biff's transfer to the home that's different from most of these situations is that, because he's so anxious and volatile, most of the arrangements are being made behind his back. All of us feel uncomfortable with this but are unsure that there's a better way of dealing with things. We're dripfeeding info to him as fast and effectively as we can...

Meanwhile, progress continues on the organisation of his eighteenth birthday party at a local pub. We're expecting several of his learning disabled peers so it should be a lively night.

Unpicking a life

2007-07-10T00:03:00.000-07:00

I'm writing a list - a book, more like - detailing the minutiae of Biff's life. This is information for the benefit of the staff at the home he's going to - stuff like what he likes to eat, which days he has a school dinner, whether he normally eats breakfast, the fact he needs waterproof overtrousers with him on Mondays...you get the picture. Weird. We're unpicking his life and then it'll be put back together somewhere else.

When I've finished Biff's list I have to start on the guinea pig's. (Likes: curly kale and carrots. Dislikes: cucumber and orange and being squeezed till he sqeaks.)

Found out a little more about the money situation from the social worker, but it's still less than fully clear. Apparently Biff will keep his (lower rate) mobility allowance, plus his 'small personal allowance'. I've been advised to talk to the home's owner about this, which I suppose I'll have to do but it might be a bit awkward. 'Tell me, how much money will you be giving my son every week?' - not a comfortable exchange, I shouldn't think. So much easier for parents if Social Services produced an A4 information sheet on the financial situation in residential homes. Then you could read it, and work through your 'Gosh, so little??' or 'Wow, so much??' reactions in private.

Where are all the learning disabled people?

2007-07-09T03:45:00.000-07:00

My friend, mother of an autistic boy, has a theory. She reckons families like ours don't go out and inflict ourselves on the general population much. I think she's right. How often do you see a family out with an adult learning disabled or otherwise different member? People in wheelchairs- yup, often. But non-wheelchair-using learning disabled adults out with their families? Not that often.

It came up in conversation after I'd recounted going to a pub - lovely country pub with a beer garden set among rolling hills - and how we'd all sat there sniping at each other. Every other person in that garden was smiling and happy, enjoying the sunshine. We were miserable and stressed, tired and unsure how Biff would react to the dogs around, the noise of the baby crying in the distance, the fact he was getting a bit peckish and we couldn't easily afford to eat out that particular day.

Anyway, she reckons other families faced with the same possibilities for a bad outcome, simply stay at home. Probably doing everyone a big favour. I thought about this yesterday when another visit, to a local heritage centre, ended in similar circumstances. Biff decided his life wasn't worthwhile without something from the second toyshop we came across, so having ridden on the train, and clutching his first treat in his hot little hand, he raged and sulked and came charging towards us, head down, issuing death threats if we didn't comply. Once again, I was told, once he'd calmed down, that I owed him an apology. I'll say it again: huh?

At transition time - well, in growing up generally - going out with the whole family gets so much harder. The small boy that I could once pick up and make do is now a strapping lad who's sometimes a danger to all of us and to himself. Bo walks away in embarrassment or fear. When he was little my attitude was always thick-skinned and determined unawareness of anyone's disapproval - Biff had as much right to live and take part as anyone else so they'd just have to put up with him. But now, his behaviour's worse, he's bigger and he sometimes scares people. And if he did hurt anyone else, or inadvertently cause an accident, as an adult, how much understanding for his learning disability and the rest of his problems would be in evidence then?

Meeting with social worker last week, altho' I'm not sure what for - possibly just touching base and offering moral support. And have had confirmation from the home that Biff can definitely take his guinea pig to live there with him so I can work that into Biff's dripfed acclimatisation to the plan - maybe take him to buy the outside cage and run, without mentioning a time plan or anything.

A false dawn?

2007-07-08T01:01:00.000-07:00

Well, it could be but let's be optimistic - a couple of minor advances recently...

Yesterday Bo went off to France on her week-long school trip. There's nothing Biff enjoys quite so much as a ferry ride so we were expecting some difficulty over the fact she was going and he wasn't. We've been through this situation in the past when someone's been on a GNER without him, or to a theme park. There's usually some shouting, throwing stuff about, a total inability to understand that anyone else has a right to do anything Biff might also enjoy, and then we end up making ridiculous promises about where we'll take him and what we'll do for him in the future. Nothing much tho' this time. Last night (we waved her off at midnight) I found him in tears, but that was because he's going to miss her - this is the sister he torments from morning till bedtime. The only concession we've had to make is a French lunch for the rest of us so we'll be eating the same stuff as Bo. I can live with that.

Also yesterday I did a little more priming on the subject of eighteen year olds leaving the family home and in Biff's case, taking their guinea pig with them to live in a cage in the garden. He didn't react much. I then repeated the conversation in front of both Biff and Barney, at which point Biff said: 'I don't want...to keep him in the garden.' Ok, we were all expecting the not wanting to move out speech but we didn't get it. I'm not daft enough to think this means that when the time comes Biff's going to set off with a big smile on his face, but it was a small - very small - breakthrough.

When we got back from school last night we were pretty tired. Biff decided at nearly 1 am that he had to find something urgently and then started playing with stuff and generally didn't display the degree of tiredness you'd like to see in your children at that time of night. Anyway, I put him to bed as usual, after much chivvying, but we've decided that this is the week we'd like him to start getting into bed himself. All my part in the process actually consists of is a lot of persuasion and waiting around and then putting his quilt over him, and it's clearly a security thing for him - 'Mum's putting me to bed; all's right with the world'. But just turning eighteen seems a reasonable point to stop...we'll see how successful that little plan is.

Hooray for...

2007-07-06T06:41:00.000-07:00

...Boys' Brigade!

What has this got to do with transition? Well, nothing really, except that Biff becoming eighteen is also the cut off point for his BB membership. He's been through Anchor Boys, Junior and Company sections and reached the end of the road. Another small rite of passage.

At the time Biff joined they'd never had a child with special needs, but 'Send him along, I'm sure we'll cope' was the gist of their response to my tentative phone call. He's been going ever since - eleven years! - and has thoroughly enjoyed being part of the gang every Thursday night. His winning the Company section cup at last year's Presentation Evening produced loud and long cheering from the audience.

Not sure what he'll do on Thursday evenings in future but in the meantime, let's hear it for Boys' Brigade...hip hip...

We're all going on a...

2007-07-05T11:58:00.000-07:00

It won't have escaped your notice that the school holidays are coming up. The last one for Biff, in theory, altho' in practice he'll probably go to college next year and carry on having long, lazy summers for another couple of years.

When he was little, the summers lasted forever and Biff wanted every moment filling. Someone referred to him recently as very energetic, but he's not really. He simply takes a lot of entertaining. Remember the robot on Short Circuit - 'More input! More input!'? - that's Biff. We used to go round castles in 10 seconds flat because once he was in a room, he was looking for the way out and wanting to get onto the next thing. We'd have to leave cafés as soon as Biff had finished his drink (5 seconds tops), even tho' the rest of us hadn't even started on our toasted teacakes yet. We'd go on long walks and picnics for hours and then, as I put the key in the door on our return, he'd say: 'Can we go somewhere nice now?'. He'd never had enough, as opposed to his weary mother, who, having had to get up with him and the lark together, was knackered even before the day had properly begun.

Anyway - that was quite a little reminisce, wasn't it? - we have more holiday cover for Biff this year than we've ever had before, to the point where I can count on one hand the number of days I'll have to entertain him all day myself. This is good because young lads don't usually spend all day with their mums, and because it gives me time to a) spend with Bo and b) go to work.

Like a normal person.

No Beastie Boys in this house

2007-07-04T13:52:00.000-07:00

I can state categorically that we have no music, in any format, by the Beastie Boys. I know this because I've just had to search our entire and fairly vast collection for Biff. He'd found something on Youtube accompanied by a BB track and was threatening to obsess. A trip to Tesco was looking likely. Anyway, I found him a couple of punk compilations and the storm passed over, but not without the little dictaphone I'd lent him getting thrown across the room and wrecked. Biff did the throwing, but apparently I'm the one who 'owes an apology'. Huh?

Gated community

2007-07-02T05:10:00.001-07:00

Wow, first sight of the newly refurbished house that Biff's moving into this summer, and it's beautiful. Hardwood floors downstairs, carpets in the lounge and bedrooms, all rooms en-suite, enclosed garden, conservatory. We've chosen a bedroom for him which overlooks the road - this was in preference to a garden view which, while nice, wasn't going to offer much entertainment. The enclosed garden means that the conservatory door can be left open during the day so Biff won't be locked in. Also met the newly-appointed manager.

Next step from the home's point of view is an assessment pack to work through, and in the meantime I'm to write stuff about Biff down in case anything isn't covered by the pack.

We've established that the week we were thinking Biff would move coincides with Barney's weekend in London, so there's a chance that we'll bring the move forward slightly so that Biff can have us all around at the crucial time.

Still got butterflies, and Barney's pretty gutted at the moment, but am sure this is the best thing.

Baby steps

2007-06-29T03:53:00.000-07:00

The home's owner very kindly gave me the phone number of another resident's mum. Her son moved into the sister home last January and she reported that, altho' she'd been very anxious, he'd settled in well and now became bored on his visits home to mum and dad! This is what I'm envisaging/wishing for Biff. If we can just get through the awful telling him and settling in period, I think he'll be fine.

She also told me about a couple of other places she'd been to look round where the managers had made restrictions about visiting - 'Give us a couple of days notice' - and allowing parents into the kitchen, etc. Makes the blood run cold. Why would they need notice to allow parents to visit their own child? What are they hiding in the kitchen? The more I think about this move, the more lucky I feel that Biff has a place there.

Biff has the first part of his transition health MOT this teatime, at home. We're visiting the residential home (without him) on Monday morning (our first glimpse of the refurbished building and Biff's new home!), and on Tuesday I have a meeting with the social worker.

Still haven't seen the doctor for the diazepam the social worker recommended but I'm not sure our doctor's going to be too keen to prescribe it anyway. We shall see. The move is planned for the last week of the school holidays, by which time Biff will be 18 and (I'm guessing) legally able to decide for himself whether he needs/wants to take a tranquiliser to help him through a difficult period.

The other things he should be deciding for himself, or at least having a major say in, are things like bedding for his new room and what he'd like to take with him. Involving him in any of that means telling him the plan and we can't risk that yet, because of his anxiety levels. The adult services key worker told us they'd once moved someone - a severely autistic boy - an hour after telling them. I'm thinking maybe a half day after for Biff. I wish it didn't have to be like this but it's kinder and safer not to have him worrying the entire summer with the inevitable blow ups that would cause.

Money talks

2007-06-27T11:25:00.000-07:00

I've been trying in vain to get some clear answers on the finance situation. Of course I realise that, once Biff's moved, most of his benefits will go towards the home's fees. That's fair enough.

What I'm trying to find out is what the level of 'small personal allowance' he'll be given is likely to be, and whether we'll end up having to add to it. This isn't a problem in itself and we don't mind helping him financially, if only we knew so that we could plan. With Barney hoping for retirement in the next year or so, we need to know how much money we're going to need coming in. The only thing I've got a straight answer on so far is that the home generally pays for stuff like dinner money for school etc.

Think I need to do some digging...

Stop Press! Honeysuckle gets a grip!

2007-06-21T06:04:00.000-07:00

A meeting this morning that didn't reduce me to a snivelling heap. Full of practicalities and details - who'll pay for this? how will we arrange that? lots of What Ifs. Home owner certainly knows his onions and the Adult Services key worker is approachable and efficient. Must be terrible going through this process with people you have no faith in, and I'm grateful we've had input in most cases from staff with lots of both common sense and knowledge.

We now have a time-scale in place, have arranged to view the home Biff's going to and need to discuss as a family the best way to handle the move, bearing in mind Biff's anxieties and certain opposition. Key worker has lots of plans for various people to assess and help Biff once he's settled.

In the meantime, I've been trying to arrange some holiday insurance for a short break we're having abroad in July. I blithely sorted this out with a major company and then checked via live chat - don't know why I did this as we've insured with them before - that they didn't regard Biff's learning disability as a 'pre-existing medical condition'. Er, sorry, came the reply, this would be an exemption and we wouldn't be able to cover you. They grudgingly decided that they might be able to, depending on the outcome of a telephone screening. In the end, yes, we could have the insurance but they'd have to use a different underwriter and there'd be an additional payment of £11. I don't really understand this, but I think it boils down to the difference between learning disability and illness, and the insurance company's refusal to accept there is one. Or something like that.

Talk Talk

2007-06-19T08:23:00.001-07:00

Meeting arranged for Thursday between accommodation provider, Adult Services key worker and me, at home. Plus instructions to ring social worker afterwards for follow up meeting.

Phew, thank goodness. I was getting withdrawal symptoms.

Miss You Nights

2007-06-18T05:58:00.000-07:00

Biff has gone to respite for the night and, as usual, because of his high anxiety levels and the danger of an extreme reaction, I didn't tell him until his school bus arrived. It's awful to see the panic register in his eyes and the excuses he comes out with, the pointless refusals, the hanging back from getting on the bus to plead one more time. He and I both know I've tricked and trapped him. I want to say, 'Okay, you can come home from school instead', but that would be unfair on all of us - especially Bo, who needs a peaceful night now and then, and the guinea pigs, who I'm sure appreciate the odd few hours without alien arms appearing inside their cage trying to squeeze them to death.

Not much news on the transition front, just a message from a community nurse offering Biff a health check. These are being offered to all disabled seventeen year olds, presumably making them ready for passing on to Adult Services - a bit like having your car MOT'd before you sell it. Good idea anyway, must remember to mention the wheezing Biff's started doing in the last couple of years and the fact he's putting weight on. Biff's school is very into healthy eating and he's taken all the info on board to some extent, but faced with a choice of banana versus cake-and-custard, the cake-and-custard option will win every time.

With a little help from...

2007-06-13T05:57:00.000-07:00

...my friends. Again.

I'm lucky enough to have been guided, when Biff was a baby, to a group of mums of children with various disabilities. At that time they were setting up as a support group holding monthly meetings, and were welcoming new members. In more recent years that side of it has diminished - we meet far less often and we've become simply supportive friends.

Last week we met in a local pub and I spilled the beans about Biff's proposed move. It was a pretty emotional meeting all round, with some parents remembering their experiences and others looking to a future that's actually quite scary. But it was also great to talk to women who knew exactly how I was feeling and empathised, even tho' life's not easy for any of them. I don't know how we manage to talk about disability-related stuff and yet our evenings out are always cheerful. (Altho' the words 'we met in a local pub' might offer a clue, I suppose.)

I'd recommend anyone, especially those whose children don't have an exact diagnosis, to find or set up a similar group. The nucleus of this one started via the local Child Development Unit playgroup, but there must be other opportunities for small groups of mums and dads to get together and offer mutual support, even to those whose children have different kinds of disability.

Two of these mums have been instrumental in setting up a local post-school provision facility for severely disabled young people. With their children coming up to 19, they spotted the gap in local provision and set about closing it. I don't understand why people like this aren't running the country. And, at the same time, feel ashamed that I don't do more pro-active stuff. Ironically, I'll have more time when Biff moves out.

Passport photo blues

2007-06-12T02:26:00.000-07:00

I suppose a minor rite of passage is the receipt of an adult passport. Biff's is up for renewal, and since his last one the photograph requirements have become much more stringent. So far, we've spent nearly £20 trying to get one that's acceptable. We sent off one we thought might pass muster but it didn't, so we went off to try again...and again...and again...

It sounds easy - sit in a booth, put in your money, follow the instructions and hey presto - suitable snap. The machine even gives you three chances to get it just right.

But Biff finds it hard to position himself correctly, is irritated by an adult interfering in his efforts (ie helping), can't understand why the rules are so stringent and is in such a hurry to get out of there that if the first attempt isn't good enough he presses the green button anyway.

Last night we managed one without glasses (so no reflection) and with his head at the correct height. So, we've sent it off. Of course, without glasses he has a squint so only one of his eyes meets the rule about looking into the camera, but hey, you can't have everything. I've put in a polite note explaining the difficulties we've faced and am hoping they're feeling kind. We'll see. I wonder how other learning disabled travellers manage?

In between last night's two attempts we stopped at McDonald's for an Unhappy Meal and Biff offered violence to a toddler who cried in his hearing. As the toddler was only inches away from us I had to physically hold Biff back - no mean feat when he's both bigger and stronger than me, with a determination to match any adult's. The toddler's dad turned out to be a support worker for people with learning disabilities so didn't thump Biff on the nose. Even so, I fear I was less than gracious - it's so hard to make conversation when your son seems to be trying to kill someone.

Time to swallow hard

2007-06-08T04:31:00.000-07:00

We've been on a visit. We've thought it through. We've asked questions of the staff. We've thought and thought. We've looked at the house, the garden, met the residents and thought some more. And we're going for it. We've told the social worker we'd like to go forward with Biff's application to live in the residential home.
What was it like? Well, pretty good obviously, or else the plans would've been derailed. But the owner - still a bit downbeat, but that's preferable to false bonhomie - and manager seem very efficient and positive, the house is lovely and activities are arranged for virtually all spare time, altho' of course residents don't have to take part if they don't want. They all do different things - go to college, school, work, whatever. There's no institutional mealtime, there are locks on all the en suite bedroom doors (one girl prefers to think of her room as her 'flat') and generally the vibe is good. Very much like a family home. I can imagine Biff being happy there in maybe twelve or eighteen months. It'll be a hard road for him till then but maybe he'll surprise us all, and the staff will be there to support him, as will we.

A nice thing about it is that it's mixed age, so that residents vary from eighteen to seventy. I can see some people might think this is a disadvantage and certainly I wouldn't want Biff joining a group made up entirely of elderly people, but I think all ages contribute something different and Biff's never had many old people in his life so it'll be nice for him.

Another nice thing is that it sounds like he can take his guinea pig.

A worry is that he now has to be assessed by the home's management to see if he's a suitable candidate. He seems to fit the criteria, but the irony of it if they now turn him down!

Anyway, the bottom line is: he's not ready to leave and we're not ready to let him go, but stuff's happened that can't go on happening and this place has come up so we think he'll be going there when, or shortly after, it opens in July. And we think it'll be okay. It will, it'll be okay...

Spring Bank...a time for relaxation?

2007-05-31T09:44:00.000-07:00

I received an email from a friend recently saying it was the school holidays, so she was 'having a nice, relaxing time with the children'.

Run that by me again? 'Nice, relaxing time'?

There are two places I can take Biff in the holidays and feel reasonably hopeful that all will be well - one is the local cinema where he sometimes falls asleep, sometimes asks several hundred times 'how many minutes left?' and sometimes - just occasionally - enjoys the film. The other is the local reservoir, for a half hour walk. Unfortunately he's now decided that the reservoir attracts too many dogs (he's terrified of dogs) so that's now off the list.

What we never have in the holidays is 'a nice, relaxing time' because I can't foresee Biff's behaviour and there's no reasoning with him. There are too many variables: he might see and demand something I can't afford; he might need a toilet urgently when we're nowhere near one; I might stand in the wrong place, say the wrong thing, not move fast enough; there might be dogs; he can refuse aggressively to accompany me to the very shop we've gone into town to visit; anything can happen and whatever it is, it'll make him stressed, and consequently angry and aggressive. Neither nice nor relaxing, for him, for his sister or for me.

Have got an appointment next week to visit a local residential home run by the same company who are renovating the one Biff has a place at. Owner sounds a bit downbeat. Or am I just looking for problems?

Aiming HIgh for Disabled Children Report

2007-05-24T09:27:00.000-07:00

The Disabled Children's Review, 'Aiming High for Disabled Children: Better Support for Families', is published today. It's all a bit late for Biff and his generation but maybe it'll help today's disabled children get more out of life.

The report sets out the key elements of the £340 million funding package for disabled children, which includes:
£280m to deliver a step change in the provision of short breaks
£35m to pilot accessible childcare
£19m for a Transition Support Programme, modelled on the Early Support programme but focussed on young disabled people in transition to adulthood
£5m to help more parents get involved in shaping services at a local level, including through parents forums.

To download 'Aiming high for disabled children' and find out more go
to:http://www.edcm.org.uk/aiminghigh
(National Children's Bureau)

Dangling conversations...

2007-05-22T11:53:00.000-07:00

I seem to have many of these lately, particularly with the social worker, who's worried, it seems, that we'll go back on the idea of letting Biff leave home. Every conversation re-visits previous arguments and every one ends on an ellipsis...I try to sound definite, honest I do, but a big part of me wants an exit strategy firmly in place.

Anyway, we have another meeting on Thursday with the social worker and the adult services person who will be Biff's key worker. It transpires from today's phone conversation that Biff isn't going into supported living, as was originally intended, because 'due to his complex problems/needs he'll need a higher staffing ratio'. So. No shared care. No supported living. I'm expecting them anyday to say we'll be allowed to see him once a fortnight for an hour under supervision. That's how it feels.

It's also weird that for years we couldn't persuade anyone that Biff had any problems at all beyond being a bit slow. At the moment we're coping within the family with just 7 hours outreach a week. But suddenly, when he goes into the care of adult services, he'll be seen as such a scary monster he'll need a higher than average staffing ratio?? Surely shome mishtake.

The devil is in the detail...

2007-05-21T02:24:00.000-07:00

That's how it seems to me at the moment and I'm composing a list of questions that we need answers to before we can go ahead with the residential placement. Here's the list so far:

How much a part of the community is the house going to be? Significant for Biff is the distance from the bedroom windows to the road - he loves to watch stuff happening from his bedroom window.

Will he have a key to his room?

What is the official designation of the house? Supported living? Residential home? Is it different from that of the original house he was supposed to be moving into in March 2008, and what are the implications of the different kinds of care?

Why is shared care no longer a possibility?

Who runs the house and provides the staff?

Will he be a tenant? What will his legal status be and how protected will his tenancy at the house be?

What happens about Biff's benefits? Do I continue to look after his financial concerns? How much does he pay towards the house and what else does he pay towards?

Will there be internet access and a printer? (Stuff like this is vital to Biff's quality of life.) Will that be in place or should we arrange separately?

Can Biff bring his guinea pig with him?

Will he be able to play music in his room? (He plays music loud and long - again a quality of life issue.)

Will the same people continue to support Biff in his various activities? - his voluntary work at weekends and swimming sessions, etc.

Other general support needed - taking to the dentist - will I still be able to arrange and carry out this stuff, or will someone else take over?

Will Biff be free to come and go as he pleases?

What if he hates it? This is the biggie. Are we in danger of giving up our guardianship of our son by letting him go to live in the house or would we have the right to withdraw him if that's what he wanted?

I'm sure there's lots more, and this knot in my stomach isn't going to ease until I have adequate replies to each and every one. Probably not then either. Altho'...seeing as we signed up for 'shared care at some future point' and this has mysteriously morphed into 'fulltime care almost immediately' I have a feeling our influence is already ebbing away.

Also still pretty fed up about the PCP. I know, I know, I've been through this already but if the facilitator can only manage PCPs for those young people who feel at ease talking to her then something needs to change - either train up more facilitators, or get the people who the young people are already at ease with to do the facilitating. Biff, and I'm sure plenty of others, is facing a huge change in his life and those 'professionals' around him need to be aware of his hopes and dreams (even if, like most people's dreams, that's what they'll stay).

Person Centred Plan...

2007-05-18T23:13:00.000-07:00

...has been abandoned. The one and only facilitator in the area went to see Biff at school a couple of times but 'he didn't seem to feel comfortable talking to her' so that's that, apparently. Seems to me he needs a PCP more than ever if he's going to be living somewhere away from us.

We're living in interesting times.

2007-05-18T01:38:00.000-07:00

Does this sound even slightly autistic to you?:

Biff asks a series of questions as I put him to bed each night. The exchange goes as follows:
'How's Nutmeg?'
'Fine, Biff.'
'What's she doing?'
'Eating, Biff.'
'Is Nutmeg eating?'
'Yes, Biff.'
'How's Buck?'
We then have exactly the same exchange about the two guinea pigs, Buck and Sam. For good measure there's then an auxiliary question about how far the ferry has got on its way to France. I used to think it would be good to vary the answers; this is tricky as guinea pigs' lives are fairly mundane, but I tried. Biff actually wasn't happy about it - he wanted the same answers every time.
When I try to pre-empt his questions:
'Okay, Biff, listen, the ferry's halfway across to France now. The guinea pigs are fine, I've just fed them and they're eating now. Nutmeg's fine too, she's eating.'
- he listens politely and then starts asking me the questions from scratch.

This, and a hundred other exchanges and behaviours, have led us over the years to think Biff has some autistic tendencies and would benefit from input from the local authority ASD department. Despite him coming up as borderline Aspergers in the initial tests, we were shouted down by everyone (including his school - again!). No help was forthcoming.

Yesterday, there was a meeting of 'professionals' to which we weren't invited. Our social worker described Biff's behaviour to the psychologist, who said... 'That sounds a lot like autistic behaviour'.

That banging you're hearing is my head, against the wall.

Transition Information Network

2007-05-16T04:48:00.000-07:00

Your Future Choices is a magazine produced by the Transition Information Network (which in turn comprises lots of worthy organisations - Contact a Family, Scope, Skill, Mencap, etc).

Have a look at:
www.myfuturechoices.org.uk
or email them at:
tin@ncb.org.uk

Basically it covers all sorts of activities that are available to young people going through transition. Also features young people's dreams for their futures, plus advice, news and reports. Good stuff. Have a look.

Meanwhile, I'm wondering what's happening with Biff's Person Centred Plan and how much influence we, as parents, will have from now on. The social worker's really pressing for the new residential placement she's found. There's a meeting tomorrow, that we're not invited to. What kind of meeting, I wonder? What are they discussing in our absence? We're told that Biff will be able to come 'on home leave' and that he'll be able to continue with his current favoured activities. I'd taken this so completely as read that the fact she felt the need to tell me has spooked me a bit. Reminds me that there's a worrying world out there where people might want to limit the activities of young people with learning disabilities for no other reason than that they can.

A rock and a hard place

2007-05-14T04:26:00.000-07:00

Social worker emails to say there's another place Biff can go to, in six to eight weeks. Fulltime. Adult placement, so he wouldn't have to move again. It's not ready yet so he'd be one of the first to move in - this is an advantage. Fulltime isn't what we'd aimed at but we'd still be able to have Biff at home when we/he wanted. All feels indecently rushed tho'.
Not ready to let him go just yet...veering between How can I do this to him? and Why can't he behave? Hate myself. Hate the situation. Bloody, bloody, bloody...

Best of a bad job

2007-05-04T03:00:00.000-07:00

Yet another meeting with the social worker this morning. She spoke with Bo and Biff on Monday and today has come, while Barney's here, to discuss options for sorting Intolerable Situation.

My feeling that we should go with trying drugs of some kind to calm Biff and take the edge off his anger remains, but Barney prefers the idea of some kind of shared care until the house, which will (we're hoping) from next March provide his more permanent home, is ready. Am astonished that Barney has gone with this option altho' can see his point about it preparing Biff for grown up life etc. Makes me feel very sad (if he'd just behave...) but that doesn't necessarily make it the wrong thing to do. In some situations there's no ideal solution, just damage limitation and making the best of a bad job.

It would entail Biff living somewhere else either during the week, or at weekends, and with us for the rest of the time. Apart from the emotional implications for Biff, I've no idea how this would affect practical stuff, his benefits, his outreach, or all the other arrangements which underpin his life. And what about his Person Centred Plan? - haven't heard anything about that for months, despite being in the midst of transition already.

The kicker to me is that if a meeting that's taking place next week (psychologists, counsellors, etc etc) decide that Biff has to have a psychiatric report, as seems likely, then that psychiatrist could well prescribe drugs anyway. And we'll have lost the power to say we don't want him to have them. Wonder what the situation is with learning disabled people and the taking of drugs?

Can feel our control of the family ebbing away and it's scary. How must Biff feel?

Good Ship Intolerable

2007-04-27T05:59:00.000-07:00

Visit from nice social worker, who has declared Situation Intolerable. She's especially worried about Bo, who reacts badly (I may have mentioned...) to the constant rows and assaults and God knows what else that are happening.

Okay, one suggestion was that we ship Biff out smartish so Bo can start to have an 'undamaged' life. Difficulty here would be that we'd never find somewhere good, safe, comfy, etc enough at short notice, plus Barney would never agree, plus we've been tentatively building Biff up to moving out next March - we can't suddenly tell him he's going this weekend. And, dammit, I'd miss him. Not sure I'd exist if I wasn't being shouted at and bossed about.

Second suggestion is trying medication. Have always been against this but it might help. Time to think again. Would we argue over him taking medication for diabetes or athlete's foot? Nope. Get a grip then.

Keep meaning to say something about a magazine I found on transition, probably from one of the web links. Too knackered now - will look it out later.

Definitely not a barrel...

2007-04-16T22:50:00.000-07:00

My daughter's depressed. At an age which can be difficult (13), but which should also encompass a lot of laughter, excitement, trips into town, bowling, the cinema with friends, she slumps on the sofa in front of US soaps and sobs at the idea of having to return to school and at life generally.
A trip to the hospital confirmed IBS due to stress, but we didn't mention the depression. I wish we had done but if someone presents, as both of us usually do, as someone who's coping, how do you then say 'I'm struggling' without appearing an attention seeker or malingerer?
Is this my fault? Has she learned depression from me? Do I, as her dad suggests, encourage her? I know that his more robust attitude doesn't seem to help, but then neither do my cuddles and encouragement. Of course I know she has to go to school. I know she has to get out of bed in a morning. I know lots of things, just not anything that seems to help at the moment.
Barney's attitude is that lots of people have worse lives. That's true, but lots of people have better ones too, and it's not all about what you have to face but also the resources you have within you to face those things. And at the moment Bo's resources seem almost completely depleted.
Bo says it's about two thirds down to Biff's behaviour and a third other stuff. I don't know; I think if Biff wasn't around Bo would still be the kind of young person who found the adjustment to adult life hard, but in the meantime Biff continues to make his presence felt and force us all into positions and situations we don't want to be in.
It is hard, Bo. Bloody hard sometimes.

Show me a molehill and I'll show you a mountain

2007-04-12T08:58:00.000-07:00

It's the little stuff that tips the balance everytime. Stuff that would mean nothing in a happy, well-balanced life but which, in the face of juvenile aggression and struggles, means so much more than it should...

Biff had several hours outreach stockpiled with the local service providers. We hadn't purposely stockpiled it - I know that's frowned on - it happened because his support worker had been unavailable for several weekends so we'd had to manage without until something was sorted. It became, nevertheless, like an emergency savings account in my mind.

Didn't quite work out like that tho'. When I checked about using them the other day, I was told that 'all hours were zeroed' on April 1st.

Jolly poor show, I reckon.

Looked After Children...

2007-03-26T23:12:00.000-07:00

It was Biff's Looked After Children review the other day - he has to have one, despite the fact that he's not in care, as he stays overnight occasionally at the respite home. The key worker from Adult Services didn't turn up. She was vital! - Biff becomes an adult in four months. So we have to have another one in three months' and hope she can come next time...

Still not heard anything about the Person Centred Plan - this is presumably being worked towards in the background but I (and the social worker!) never hear anything. The social worker did say tho': what's the point of a person centred plan when we're deciding what'll happen to him? Good point! Well, we're managing the accommodation side of things because given the choice Biff would stay at home ruling the roost for the next fifty years and that's not viable, but there are other areas in life and hopefully Biff can have more say in those.

The social worker mentioned that she was having to argue repeatedly to keep Biff's outreach hours - there's this constant tussle in social services between budget constraints and service users' needs. I think we'd find it very hard now without those few weekend hours to give Bo chance to have some of Barney's attention. More power to her elbow!

All quiet on the transition front...

2007-03-14T07:56:00.000-07:00

...although stuff continues to happen - good stuff, bad stuff, scary stuff. A medical appointment was abandoned last week because Biff's needle-phobic, wouldn't use laughing gas for relaxation purposes and didn't respond to the oral sedative. Only untried method of knocking him out was a big hammer. This was the second time they'd tried to perform this procedure, so am not sure where it leaves us or what happens if medical intervention is at some point desperately and urgently needed. In the past Biff has been held down and had a line forced into his unwilling arm or wherever. But what is merely undesirable and upsetting in a child becomes assault once he reaches eighteen. The frustrating thing is that while he has a very low fear threshold, his actual pain threshold is pretty high.
People have generally been very kind with Biff but the whole system regarding medical services for those with learning disabilities seems muddied. Too often disability awareness seems to relate to physical or sensory disability - the disabilities that staff feel, rightly or wrongly, that they can more easily accommodate.

Progress possibly

2007-02-16T04:20:00.000-08:00

First meeting this morning with the Team Leader (and Biff's future key worker) from the Adult Services team. Seems very nice and allayed some of my earlier fears about the changes in accommodation provision. We talked about Biff, his anxieties and problems, the rest of the family, the accommodation we thought might be suitable, and now she's planning to go to school just to say 'hello' to him briefly.

Big news for me was that there's a new-build house coming onstream probably March next year, which might be suitable for Biff to move into with a few other young people with similar needs and problems. It's maybe four miles away from here, which to Biff will be akin to it being on the moon (he really wants to be in the same street...well, the same house), but might be a goer and I'd be keen to have a look around.

Am telling myself constantly that this is the best thing for all of us, even though in the short term (I hope it's only in the short term) it's actually very painful for all concerned. If Biff moves out we'll be able, we hope, to have a much healthier relationship with him - pop round for a cup of tea, bring him back for the weekend, etc - and hopefully Bo also will be able to patch up her own relationship with Biff, as well as benefitting from the reduced tension in the house. Would be lovely if we could all just wake up eighteen months from now and everything be settled and hunkydory. Two good things about this proposed move would be that with the house being new it can be planned to accommodate the tenants' needs more exactly, and also will have a garden in need of Biff's attention, and he's well into gardening so maybe that would make him feel more at home. Or am I kidding myself? Who knows?

Things will apparently now move slowly...seemed strange that I was being asked this morning whether we could manage till March next year. Well, we've managed for eighteen years, and I don't think I could take it myself if things went too quickly - these are changes that we all need time to get used to.

Too close to the edge...

2007-02-09T06:58:00.000-08:00

...for comfort.

The last week or so has brought home to me how quickly life becomes too tricky to manage. Started off with Bo and Biff both off school poorly at the same time.

We think Bo might have IBS or some other stress-induced abdominal problem. Major cause of stress in her life is Biff's behaviour so there was no way she was going to get better while he was home too. The doctor gave me details for making an appointment with a paediatrician but bloody web system didn't work so now have to ring which will be fun as I have about three spare minutes every week when I could take her. On the web system you're supposed to be able to view the available appointments and choose one to suit. Ho hum.

Biff had a bad cough/cold/possibly flu. He passed this on to me and I spent last Thursday in bed and have subsequently not really fully recovered, sleeping part of every day since and weeping at the slightest provocation and, quite often, without any provocation at all. This week Barney's on late shift so isn't here during the difficult evening periods when Biff continues to make his demands, shouts, swears, threatens and causes havoc etc etc just as usual. I should be able to cope, but can't. Cue guilt. Cue feelings of worthlessness and lots of other negative stuff. Factor in complications like I've just started a new course, am just starting a new job, and that Mencap can't look after Biff this weekend and 'self-pitying' and 'end of tether', as expressions, aren't adequate. 'Prepare to jump in canal' might be nearer the mark.

But what's happening transition-wise? Well, I've a meeting at home next Friday with the social worker and the woman from Adult Services who will be taking on Biff's case. I asked about looking at the residential place suggested and I think that can be arranged but social worker now suggesting Biff might too able for it. Area's one and only transition facilitator off work till mid-Feb.

Learning disability transition

2007-01-26T06:14:00.000-08:00

A few positives...

Parent Council replied that they're there with a listening ear or support if needed, and the info that the local authority probably isn't allowed to introduce a blanket ban on certain types of accommodation.

The social worker has made our requested changes to the Transition Review she's written. Feel better about this now altho' even with the changes it all sounds pretty negative. If you make everything sound hunky-dory, which is any parent's natural instinct - who wants to wash their teenager's dirty linen in public? - you get nowt.

On Monday evening we went off with Biff to a local pub where they've set up special evenings for local disabled young people so they can socialise like any other teenagers. The young people are welcome to go alone (if suitably able) but most of them seem to feel better if they have a parent or carer with them, if only in some other part of the pub. They seem like a great crowd and some of the young people with Down's in particular were very welcoming to my own self-conscious little Biff. He wants to go again, so must've enjoyed it (he's pretty inscrutable sometimes). A great initiative - the second locally, as another pub holds regular bingo nights for disabled clients. More power to all their elbows.

Transition - missed the celebration

2007-01-19T07:04:00.000-08:00

Well, I didn't go because of the horrible gales yesterday. Am wondering whether it took place or whether everyone else wimped out too. Not heard back from Parent Council.

Anyway, am feeling cynical and fed up after reading the social worker's Transition Assessment on Biff. Of course, it's like filling in DLA forms - they have to bang in all the negative stuff they can in order to get the help your young person needs. So, it sounds awful and says, among other things, we won't be able to provide Biff with a home after he's 18. In fact, we'll offer him a home till he's 95 if it's a choice between that and him being unhappy in an institution. What else could we do? - enjoy our nightly cocoa and games of Scrabble or whatever, knowing he's sobbing in some alien environment? That of course, loses sight of Biff needing to become more independent, Bo needing a safe and secure home life and the fact that, realistically, we probably won't be around til he's 95. But there must be some middle ground between an institution and staying home...

And the walls come tumbling down...

2007-01-14T02:22:00.000-08:00

I had a meeting with the social worker last Friday and it now looks certain that no further small units will be commissioned, as accommodation for disabled young adults. This means that Biff, if he moves out, will have to go into an established larger unit. In turn, this means he won't be moving in - as in 'sharing a flat' - with his friends, but joining people already living there, and that the accommodation will be wherever it happens to be rather than where he needs it to be. At its most fundamental it means the Person Centred Plan is pointless as far as accommodation is concerned. I await the forthcoming 'celebration' of PCP with interest.

The social worker - who's great, this isn't her fault - indicated that a place might be available in a nearby town in an eight-bedded unit. Large grounds, own kitchen, communal areas, finished to a high standard, etc. All sounds lovely, but it's eight miles away and Biff wasn't thrilled when I asked him should we all go and look. How could we possibly force him into what is basically a small institution? This would feel like abandoning him much more than if he was to start sharing a house on equal terms with three friends from school - we could present that to him as a growing-up kind of development. Not many people grow up and move straight into what amounts to sheltered housing.

On the other hand, Bo is becoming increasingly upset and depressed about Biff's behaviour, and I don't know how long we can continue as we are. Seems like we're being asked to sacrifice one child's happiness for the sake of the other, and whichever way we leap we'll feel bad.

His head's all over the place...

2007-01-10T23:15:00.000-08:00

Biff's a strong, silent lad - good (sometimes, anyway) at keeping his thoughts to himself and then blurting them out in a heart-rending way that makes you wonder just how long he's been nursing that particular worry.

Yesterday I asked casually if he'd thought about leaving school and what he'd like to do afterwards.
'I don't want to talk about it,' he muttered.
'Is that because you don't know?'
'It's because it upsets me.'
'Why, Biff? You mean about the change?'
'I'll lose all my friends.'
I reassured him, but it brought home to me once again that transition is a huge step into the unknown and must be terrifying for young people who have so little real control over their lives.

Also yesterday, a boy of about twelve called at the door, asking a visitor who happened to be on our doorstep at the time (a stranger to the lad) for a lift home as he was being chased by a group of bigger lads. She took him off home, so all was well but he lost his phone in the process and was quite fearful.
Okay, next year Biff's teachers want him to go through the intensive 'independent travel' scheme - how vulnerable will he be? The school are good at anticipoating problems and giving the young people information on how to protect themselves - they've been taught to walk away from trouble etc.
But we know from experience that Biff forgets all that in a sticky situation and stares, gets angry, jumps up and down, and screams. Not attention-deflecting devices, by any means.
I want to shelter him from every young hoodlum that passes by, but how? By never letting him go out?

Continued...

2007-01-05T05:22:00.000-08:00

Okay, so Biff hasn't brought us peace, quite the opposite. But he has brought us lots of other stuff: he's enriched our lives in ways I couldn't have expected, and he's brought us face to face with the very best and worst in ourselves, as parents and as people. Without Biff in our lives, we'd (I would, in particular) have followed a very different, much easier, but much less rewarding path. Biff showed me I was more capable of problem-solving, sorting stuff out and speaking up than I'd thought possible. I'm not the world's best anything but I'm better at some stuff than I otherwise would be. He also taught me to appreciate the talents both Barney and Bo have, which I don't possess. He's made us all grow as people.
Let's hear it for Biff!

2007-01-01T21:22:00.000-08:00

This has been a good holiday. In parts. Barney's been off for a whole week so we've shared the load. Now he's gone back to work and I just have to fill four days...
Not sure if anyone else struggles to fill the days like I do or whether I'm just particularly useless entertainment-wise. What Biff wants to do, Bo doesn't and vice versa. So, at thirteen, because she's more mature and able than Biff, Bo gets either left at home or dragged along to something she doesn't want to do. Or she makes her own arrangements. Not ideal.
Having a learning disabled child, especially one with associated behavioural problems, drastically changes your life - their mood affects every moment. You (well, we) listen constantly in case the pets are being mistreated. At bathtime - less and less frequent - is he flooding the bathroom? When he goes to bed, will he stamp across to Bo's bedroom and terrify her? If we go into town, will he demand several magazines and toys we can ill afford? If I refuse to buy them all, will he lose his temper? Will we come across any crying babies, loose dogs, revving motorbikes? - all major triggers, not because Biff's trying to be difficult but because he experiences a real physical reaction to each of them which makes him behave in certain (undesirable) ways. Every single moment is filled with the possibility for turning the day to a disaster. Every moment the whole family's on amber alert.
I once read where a guy had been asked what his disabled son brought to their family life. His answer was 'Peace'. I can only say that's not the case in our family. And don't even get me started on the whole 'We wanted to go to Italy but ended up in Holland' thing. (See: http://www.ndsccenter.org/resources/package1.php
if you have no idea what I'm on about.) I haven't been in either Italy or Holland for the last seventeen years. I've been somewhere between mild depression and a nervous breakdown. I could've lived with Holland, really I could.

Transition - a couple of resources...

2006-12-27T07:00:00.000-08:00

...worth checking out for those with disabled children and young people, whether going through transition or not....

Cerebra - the strapline is 'for brain damaged children and young people' but it seems like that'll change soon. Probably would also be of interest to people involved with various disabilities. Cerebra's a registered charity and fantastic source of help and information. All their services are free. Check out the website at:
www.cerebra.org.uk

The Big Tree - this is actually a resource listed within the latest Cerebra newsletter. It's described as 'a website to enable people with a learning disability to use the internet easily'. It includes a section on transition so I shall be looking more closely at that in the near future. I'd never heard of The Big Tree previously and it seems like it's just been set up and will become more comprehensive as time goes on. Definitely worth keeping an eye on. Look for yourself at:
www.thebigtree.org/utils/tree_intro.php (underscore between tree and intro)

An earning difficulty

2006-12-18T11:19:00.000-08:00

Back to meetings...I reckon I've been to, or held at home, about twenty meetings since Biff started back at school in September. This is great in some ways as obviously they're taking Biff's needs more seriously than they used to. On the other hand, would it be possible to hold down a fulltime job, or even a half-time job, with that kind of commitment needed to Biff''s welfare? Nope. So, having a disabled child - like you didn't know - impacts on your ability to earn a salary in anything other than the most flexible posts. (Contact a Family had some frightening stats from a questionnaire they organised a few years ago.) Even the school, which is excellent is many other ways, closes at the first snowflake because their students are 'vulnerable'. The school buses are taken off the roads over the entire district as soon as one hillside lane becomes dodgy. This is particularly frustrating for those of us who live on the main roads and who are travelling long distances to jobs in far flung towns without problem. Still, mustn't grumble, eh?

Just going off at a tangent here slightly...how does the parent of a disabled child arrange childcare? With difficulty. Ta-da. When they're tiny, it's dead easy, you get a regular childminder or send them to a nursery. No problem. By the time they're stroppy teenagers with the emotional maturity of a three year old, it's trickier. Can anyone explain why, when so much money has been thrown at nursery places and getting 'mums' back to work, there's been nothing at all done for those parents looking after disabled young people? In our authority childcare comes under the 'Early Years Partnership' - a sure sign they're not concerned with the older disabled children who still need supervision/support.

If local authorities provided, for example, lists of teaching assistants in the special schools (with their permission obviously) who might be interested in some extra summer hours; if they set up longer, proper out of school clubs for both children at special school and those with disabilities at mainstream, (running all week and till a time parents could get back); if they trained childminders in minding older disabled children; if they took on board that there's a gap here; if they just met with the parents and asked what they need, it would be a start.
Personally I've just arranged some care for Biff via the local university jobshop - a trainee social worker. The arrangement suits both of us as it's good experience for her for her course and future work, and great for us as she's already police checked and has an obvious interest in the area. Maybe you could do something similar. But if not, get onto your local councillors.

One of the things that came out of a review of transition that the Parent Council held was that parents felt 'no parent should have to give up work when their child leaves school'. Shouldn't even need saying, should it?

It's Christmastime...

2006-12-13T01:13:00.000-08:00

...there's no need to be afraid.

Ah, but I am! Our lovely behavioural nurse has visited for the last time as she's leaving the area early in the new year. It's made a huge difference having someone around who actually a) believed we were having problems with Biff's behaviour and b) offered some effective strategies for dealing with those problems. We'll miss her, not only because of all the huge changes just round the corner, but also as a warm and very likeable personality. Now I feel I'm walking the cliff path without a fence to keep me and Biff from falling, or being pushed, into the raging sea many feet below. What a melodramatic nitwit I am at times.

Anyway, we had a couple of meetings on Monday this week - another review of the respite arrangements early afternoon and a meeting at teatime at home with the nurse and social worker. This question of meetings - think we'll re-visit that sometime. I think these two took me up to about 20 for this term alone. That's a lot of meetings...very useful and we're grateful for the attention - don't misunderstand me - just difficult sometimes to arrange the rest of life around them.

Another thing-in-the-pipeline is a 'celebration' of Person Centred Planning organised for the new year by the local Parent Council. More power to their elbows. Have signed up for this, although am not sure what a celebration might involve in this context. Time will tell.

Across the great divide

2006-12-06T05:00:00.000-08:00

Every meeting with social services, or other personnel, these days has that element of 'this is only until Biff's eighteen'. On the day he's eighteen suddenly new schemes are put in place, new staff, new respite systems, new financial arrangements. (We've learned recently that 'adult services' have failed to inform 'children's services' that there is no longer an accommodation panel, which might mean that the type of living arrangements we were hoping for for Biff are no longer a possibility. It's weird that a major change like that can happen and the very staff who are steering young people towards these services haven't been told...will have to wait and see what the impact of this is on Biff.)

Anyway, it's a very strange system, designed surely for ease of management and administration rather than for the benefit of those using the services? Biff's earlier social worker left to work in a local authority which has a dedicated 'transition team'. I'm not sure how that works but it seems to be regarded as best practice. And yet...is there still a point at which ALL a young person's official contacts change and his respite home changes and his circumstances change, all at once? Is it still the case that over-eighteens are lumped in with very old people? Is that good for either the oldies or the youngsters? What would be good would be if the same social worker could stay with the young person from toddlerhood, if the respite home could cater for all ages from childhood upwards, maybe in different sections or in adjacent units with reciprocal visits and (sometimes) joint entertainment.

I don't know how it should be arranged, but I know this definite cut off point is making me nervous so it must affect the young people badly, no matter how well it's managed.

The person-centred plan

2006-11-29T12:08:00.000-08:00

Not everyone's lucky enough to get one of these at transition, but Biff will be doing, so on Monday we had the first meeting with the local PCP facilitator. She explained how the intention was to plan with, rather than for, the young person in question, to glean ideas about what their ideal life would be and then make it come true as far as was practicable. Her first job will be to get to know Biff a bit and dripfeed the idea of changes which usually happen when people grow up - moving out etc...We have to read through a booklet she left then get back to her when we're ready to go ahead.

The behavioural nurse thinks that Biff might be able to settle happily into a supported living arrangement if it's handled well enough. I hope she's right. Am still struggling with this moving out thing - and was quite tearful at points during the meeting (wuss or what?) - I don't want him to move out, I really just want him to be NICE!

I also got some useful insights into how adult services work. Apparently they have huge caseloads so some people spend long periods on the backburner (ouch!) if nothing needs to change.

Mencap's info sheet on PCPs repeats that the young person being planned with is the most important person in the plan. Friends and family help - 'circles of support' our local facilitator calls them. The plan can take any format that's helpful to the person at the centre - a map, or a series of hand drawn posters on the wall, or whatever. A commitment is made to keep on listening to the person involved longterm and to adjust the plan to any future changes in their feelings and wishes. Sounds great, but is still scary. Lots of good links and info on resources on this sheet too. Come on, get downloading!

By chance, also yesterday, we received via school, a leaflet on the (Adult) Community Learning Disability Team. On the front there's a picture of the staff, all looking very jolly and sun-kissed. Despite invitations we haven't met any of these people yet - they think age 17 is a bit young for planning for something that happens at 18, and maybe they're just overworked already. But the leaflet's good - I love leaflets - and outlines the range of staff in the team and the services available. I hope all authorities have something similar.

This week's cliché

2006-11-25T04:57:00.000-08:00

Emotional rollercoaster.

Generally I like clichés, but I hate this one. Anyway, during my morning of lone parenting duty, rollercoastering emotionally towards dinnertime, I counted the following:

concern, worry, anger, shame, pride, fear (on behalf of me and Bo), thankfulness (for no revving cars, crying babies or loose dogs etc at the supermarket), worry again, guilt, guilt and more guilt, fear again, tiredness and exasperation, sadness, irritation, guilt again, anger, guilt again, compassion, confusion and yet more guilt.

This was, like, two hours. I'm knackered by bedtime.

Disaster!

2006-11-22T07:07:00.000-08:00

Our lovely, efficient and supportive behavioural nurse has bagged herself a well-deserved promotion and is off to pastures new. I'm thrilled for her, but a bit worried for us. No one has a handle on Biff's behaviour, personality, strengths, demons and fears like she has. She probably has the rest of the family pretty well weighed up too. Worse, our social worker - also efficient and supportive - is an agency worker and we don't know how long she'll be with the authority. Plus, by the law of averages, we've had some pretty good people around us recently so we're due someone really crap next.

It's brought home to me how dependent we've become on people and services, and the fact that they can change at any minute. Benefits can change. Staff, systems, public opinions on disabled people - they can all change. How vulnerable we all are. Biff, and the other disabled youngsters, most of all.

Parent Councils

2006-11-17T07:24:00.000-08:00

Well, we're pretty lucky in my area as we have an effective Parent Council, which works with the local social services, and whatever other organisations and departments seem relevant, to put forward the views of parents and carers of disabled children. They'll be running a transition workshop in the near future which I'm hoping to attend, but in the meantime they've produced a short booklet giving basic guidance. This is a paraphrased version:

Transition is a time when young people, their families and those who work with them start working together to plan for adult life - the whole of adult life, not just education or care. It should start in year 9 at the latest.

Your child will have a transition review in year 9, which will be attended by a Connexions advisor and probably your social worker and any other involved professionals. A transition plan will be made to support your child to move on to adult life.

Talk to your child/young person about education, work, relationships, travel and transport, living arrangements and support needs, and plan ahead as much as possible. Parent Council will offer help and advice if needed.

Ok, it's brief, but probably useful for those for whom transition is still on the far horizon rather than just around the corner.

If there's no parent council in your area, how about setting one up? Parents approaching social services en masse and especially in some official or semi-official capacity will always have more influence than several lone parents making the same point independently.

Google alerts

2006-11-15T00:48:00.000-08:00

This was passed on by a friend, and I'm maybe the last to know, but anyway...

If you'd like to be kept informed of new info on the web (news/www/blogs) on transition, disability or any subject, you can set a Google Alert to bring the references and links straight to your inbox.

From the main Google search page, click on 'more' - this'll take you to a page offering different sorts of services, including alerts. From here just follow the instructions.

Simple. Useful. Clever.

Teenage kicks...

2006-11-14T09:10:00.000-08:00

...and thumps.

This is the situation. We're off for the fish n' chips. (I know what you're thinking...but no, we don't have them every night. It's another Friday. We have our routines, right? Our Biff likes his routines.) We're waiting for Barney to arrive home before we set off. So far so good. An hour later Biff realises - shock, horror - that the fizzy pop shop will be SHUT by the time we get there. Calamity!

Suddenly he's raising his hand menacingly, swearing and slamming doors and...in the corner, a terrified Bo's whispering, 'Mum, I can't breathe'. She's holding her chest, and I leave Biff to slam about and swear a bit more while I go and cuddle her. It takes a few minutes before she stops panicking and starts breathing normally again.

So - after a good few years of these situations, there's my son who never ever wants to leave home ever in his whole life. You get that? Ever. He has nightmares about it. And there's my daughter who says she'll leave as soon as she's able if he doesn't.

This question - for any family - of where a disabled young person will live is a big issue around transition time. There are families who can't wait to usher their child out the door at eighteen (or before...) and there are others who would like to keep their child in a cocoon of safety, somewhere firmly under the parental wing, probably wrapped in cotton wool to boot, for the rest of their life.

It's a dilemma that's going to face all of us with disabled children. I'm not in a position to advise; the decision's been causing us a certain amount of grief recently, but in the end I think we've decided that it'll be better if Biff goes into 'supported living' within the next couple of years, to offer Bo a little peace and quiet to study for her exams, and also to improve his independence. He can come home for tea, he can come and stay, he's welcome to spend every weekend, holiday, birthday and Christmas with us, but we think as well that it'll be better for him to have an alternative home already in place for when we're no longer here.

So, that's what we're slowly moving towards. Supported living, at least in this area, consists of maybe three similarly disabled young people sharing a house, bought by a housing association and with live-in care provided via social services. Rent is paid by the young people's housing benefit or whatever it's called these days - bit vague, but you get the idea.

Time will tell whether we're being sensible (which is what I hope) or whether we're being heartless (which is what I feel).

Reviewing the situation

2006-11-12T04:29:00.000-08:00

Thursday last week saw Biff's year 13 annual review, and in contrast with several other reviews we've sat through where only we as parents attended, this time the room was packed with: lady from Connexions; social worker; behavioural nurse; community nurse; headteacher; class teacher; me; Biff. Wow, what a turn out. I think Biff was a bit overwhelmed. As he can't read the paperwork he stared into space a lot of the time. There's no way he's going to be able to respond to questions meaningfully with so many people present. (I've always been doubtful about the idea that young people should automatically be present at their reviews; there are things you can't say with them there.)
The school tends to write out potential targets for the following year in advance - we just have to say 'yes, that's a good one' etc. Usually they are well thought out and appropriate. The school staff know best what stage Biff's at so we're happy for them to decide - we'd usually only intervene if we felt something had been left out. This relaxed attitude on our part is only possible because it's an excellent school and staff there have Biff's best interests at heart. It might be different if you enjoy a less open and trusting relationship with your child's school. You might find also that you have to really push for people to attend. Some people are routinely invited and routinely don't show. Speech therapists spring to mind, but that may be an outrageous slur on my part. The only time I've felt miffed was when we had a review which consisted of me and Barney, Biff and the head of year who we didn't much care for - his class teacher was sick at the time. In retrospect I wish we'd asked for it to be postponed.
The Connexions lady outlined options for after school - courses, residential colleges, various projects and schemes. We have to think about all these and discuss them with Biff. No horticulture on offer locally - this is what we thought he might like to do. The behavioural nurse mentioned again the intention to hold a person-centred plan - this seems to be the lynch-pin of the transition process, at least in Biff's case, and we're now just waiting for the facilitator to have a window in her busy diary. She appears to be the only person-centred planner in the area at present, so if you're wondering why your child doesn't get a PCP, it's probably because there are no staff trained to guide the process in your area either.
Anyway, no surprises at the review. Except that, afterwards school staff outlined their hopes that Biff would be able to take part in an intensive Independent Travel month early next year. He's been travelling to and from his one day work-placement for a year or two now, with a member of the school staff, but their intention now is that within a single month he will learn to travel alone. What will he do if the bus doesn't come? How will he react to a stray dog? If he's lost how will anyone understand if he asks for help? The whole thing's terrifying, but being able to travel on public transport independently is so important for his future that we must give it a go. Won't be till after the winter so we've time to get used to the idea.

Politeness abounds, or how to make mum look like a fantasist

2006-11-07T23:20:00.000-08:00

Biff has some - how shall I put this? - behavioural issues. Wonderful little word, issues.

Anyway, he's capable of quite good behaviour - this usually coincides with him getting what he wants, tho' not always. He's also capable of the screaming, swearing, tantrumming behaviour mentioned earlier. Plus he gets physical. So, he has issues. I might have mentioned them once, twice or two hundred times to the people I know.

Two days ago we had a visit from a friend. Biff and Bo were looking forward to this as a) friend comes from the US of A - big Wow! factor for Biff, and b) has, as well as two gorgeous daughters, as two year old son - big Wow! factor for Bo.

I gave Biff t'Scarborough warning beforehand - 'these are nice people they don't want to hear you swearing etc etc'. And what happened? For that hour he was perfect. Did I want him to take the food through? Should he do this? Could he help with that? He was so absolutely lovely. A different boy. I hugged him afterwards and told him how proud he'd made me. Within minutes he was back to the old Biff we know and...er, love - squeezing the hapless guinea pig till he sqeaked and...well, all the usual.

So...this is my theory. In Supernanny terms, I think we've taught Biff to behave - he's probably one of the politest boys around from a 'please' and 'thank you' point of view - but what we haven't taught him is respect for us as his parents. He respects others, but not us. At home he lets it all hang out and the fears and phobias and temper that he'd bury when with he's with other people come to the surface like molten lava from Vesuvius. We did ask for help with his behaviour when he was little but none was forthcoming till he was maybe thirteen which is a bit late for behaviour modification, altho' both the behavioural nurse and we as a family have tried very hard on the programme she's devised.

Anyway, what I'm saying is, if you think you need help with your disabled young person's behaviour, make sure you get it early enough. Don't be put off by people who don't see the behaviour telling you it doesn't exist (as we were) or indeed by people who know nothing about the situation at all telling you 'he's just being a teenager'. There's a difference between being a teenager and being a thug. The other thing is to make sure that, even tho' your child's disabled, you apply the same penalties as you would for your other children. In most cases they're going to understand that four minutes on the naughty step is the result of what they did and is pretty boring. Good luck.