G: Mum, have we got any dried geese?
G: For making bread.
Grenouille got a load of fancy Lego for Christmas.
Does it make me sound antediluvian to say that my kids’ Lego is not at all like the primary-coloured 2/4/6/8-spot blocks I remember playing with? It’s all movie tie-ins; you have to follow whole books’-worth of immensely complicated diagrams in order to achieve the final creation. Eldest has a Star Wars battle cruiser still reposing on the shelves in his now-abandoned-except-in-the-holidays bedroom, while G is making something from the ‘Lego Ninjago Movie’. Yeah, me neither. G and New(ish) Support Worker took themselves off to see this Ninjago caper one Saturday afternoon, and I haven’t the foggiest what it’s all about.
Anyway, along with the massive main item, G has a crowd of tiny Lego figures, mostly vaguely Oriental-looking, and one of them is carrying two buckets, each smaller than the lid of a toothpaste tube, one at either end of a shoulder-pole. The buckets/pole combo did not come ready assembled, although the buckets themselves already had their handles on. Unfortunately, push the buckets onto the pole the wrong way, and the handles detach; as G discovered this afternoon.
“Mu-um! Can you help, please? Fix this?”
I sat trying to wrangle a centimetre-long handle onto the minute bucket. I’d get the tiny dimple on one end of handle lined up over the pinpoint-sized cone on the side of the bucket, but it would slip off before I could get the other end to click into place. After several unsuccessful minutes, I said, “Blimey, G, this is really difficult!”
G regarded me with a weary air and sighed.
“Welcome to my world.”
A teenager’s bedroom, 7.15 a.m., a Wednesday morning. As the curtain rises, the audience discovers G standing by the bed, wearing school uniform shirt and trousers, sockless and apparently headless, in the act of struggling into a school jumper.
Kitchen noises can be heard off.
Kara (off): G! What do you want on your toast, honey or chocolate spread?
(G’s head pops out of neck of jumper).
G (eagerly): Is there any honey left? I thought it got finished yesterday.
Kara (off): There’s plenty, I opened a new pot.
G: I’ll have chocolate spread.
(Kara can be heard offstage, bursting into laughter).
Week Two of #7DaysofAction for ATUs has come and gone, and there seems to be very little good news. When I wrote the end-of-week summary piece for Week One, back in April, I was quite optimistic that Education, Health and Care Plans would in future supply support to ensure that young people would be diverted away from ATUs before they ever got near one. However, EHCPs do not seem at all to be working as envisaged, being frequently late in arriving and often inadequate when they do. Then this week, I heard a story to make anybody despair.
Petra is a 20-something mum-of-three. She has an eight-year-old son, a six-year-old daughter, and a five-month-old baby, and the two older children are both struggling in school.
Petra herself had a mixed experience of school. She loved learning, but she had trouble writing things down in the way teachers like them arranged. At secondary school, she especially enjoyed history and English, but again, her written work meant she ended up in bottom sets for all subjects. Most of her fellow-pupils in these groups were noisy and disruptive. Petra, a quiet and unassuming person, could neither quell their boisterousness nor study well in the midst of it. Although she sat a full sweep of GCSE’s, she was ungraded in every single paper and left school without a qualification to her name.
When her son was born, he was found to have a heart defect. His sister was hospitalised with repeated infections as a baby, and was very slow to walk. By the time the little girl was four, she was still in nappies and didn’t speak a word. And by then, her big brother was behaving in a way that was hard to manage. He slept very little: four or five hours a night; and when he woke up, he woke the whole house up. Neither child appeared to have any concept of danger, so Petra needed to have eyes in the back of her head. That’s difficult when you are permanently exhausted.
Social services became involved. Huge meetings were convened in Petra’s living-room, with every chair and all of the floor occupied by strangers. Petra and her partner were sent on parenting courses and workers dropped in to watch how they managed the children. Petra felt criticised and scrutinised. She did everything that she was told to. But it made no difference to how the children acted.
Eventually, Petra’s doctor arranged for her daughter to have genetic testing. The tests came back showing her daughter had a genetic difference. The rest of the family were tested. Petra’s son had the same difference – and so did she.
Petra’s own Mum says she spent Petra’s entire childhood voicing her worries about her sweet, slowly-developing daughter, in vain. She was told, repeatedly, that she was an over-anxious mother. Now, way too late for help, Petra was finally diagnosed with a learning disability arising from her genetic condition. The Adult Speech Therapy service at last assessed Petra’s communication and wrote a report explaining her difficulties, and what services should do to help her understand. Petra took the report to various departments, trying to find someone to listen to her concerns about her children. No-one in the Local Authority seemed to hear.
Petra may not have passed any exams, but she knows how to use IT and social media. Via the internet, she found a support group for people with the condition that she and her children have. She got information, advice and – a new experience for her – found friends. With support from her internet friends, and a great deal of effort, she managed to get a Statement of Special Educational Needs for her daughter. But there were continuing problems. Her daughter’s behaviour was increasingly hard to understand and manage; she insisted on routines and had great difficulty moving from one activity to another. If anything was not to her liking, she would kick off into epic tantrums that involved constant screaming, destruction of anything breakable in the vicinity, and physical attacks, for hours on end. Her daughter’s paediatrician ascribes all this to her genetic condition, but a locum paediatrician described it as autistic behaviour. Two years later, Petra is still trying to access a formal autism evaluation for her girl, while enduring physical assaults from her daughter that are becoming more serious as the child grows bigger and stronger.
In the meantime her son has been falling further and further behind his classmates. Now in Year 4, he cannot even manage Reception-level work. He doesn’t understand how to play with other children in a give-and-take way. He has no friends and Petra worries he will be picked on and bullied for his oddities. In July 2014, she wrote to ask for a Statement for him, but her Local Authority told her they were not doing Statements any more because EHCPs were starting that September. Petra asked, through the school, for him to be given an EHCP assessment. He has not yet been assessed for an EHCP. He still has no concept of danger, and is over-friendly to strangers, to his mother’s considerable alarm. He sleeps no more than he ever did and whiles away the wee small hours, either with tormenting the rest of his family, or with destroying his bedroom: disembowelling pillows and mattresses, picking the paper off the wall and dismantling his toys and furniture.
With all this to contend with, Petra and her partner did not intend to have any more children. They did not realise baby number three was on the way until relatively late on in the pregnancy, and then they were in a horrible quandary. It was too late for a medical or surgical termination of the pregnancy. The option they were told about was a ‘partial-birth’ abortion, which would only be offered if the baby was disabled. This baby would have the same 50/50 chance of inheriting the same condition as the elder two, but Petra decided she couldn’t face giving birth to a dead baby. In the end she and her partner didn’t bother with an amniocentesis, held their breaths and hoped.
Petra asked for genetic testing for the baby immediately after birth. The hospital doctor first tried to dissuade her, then simply failed to send the blood samples off for processing. Petra, in a near-zombie state from caring for a non-sleeping newborn alongside her two non-sleeping children while recovering from a C-section, had to ask, cajole, insist, and finally take the baby for a second, wholly unnecessary blood draw. It confirmed what she already feared from observing her infant: the baby also had the genetic condition.
Petra asked for help. Her partner, as exhausted as she, was suffering seizures brought on by tiredness, her wider family were for various occupational and geographic reasons unable to offer much practical support, and the summer holidays were looming: six weeks without even the respite afforded by six hours’ school, five days a week. More people came and sat on Petra’s sofa and took notes. And then… nothing. No holiday clubs. No respite care. No suggestion of what support might be available or forthcoming. Petra limped through the summer holidays, feeling increasingly hopeless and desperate. Things came to a head of sorts at the first weekend of the autumn term, when the children, probably stressed after a week of lessons, ran amok. Petra phoned the emergency social work team and an adult social worker came out to see her the following week. A friend from her internet group sat in on the meeting and it was agreed that Petra needed a multi-disciplinary team to help her co-ordinate the many health, education and social care professionals involved. She needed help to care for the children and get them out to school on time, and above all, she needed respite care for the children so that she herself could get some rest. But organising those things would be the responsibility, not of the adult social work team, but of children’s services.
So yet again, nothing happened. Half-term arrived, and once more, there was nothing for Petra. She was offered a meeting with an organisation that runs parenting skills courses and ‘child behaviour support’ programmes, but when she attended, was told it was an obviously inappropriate referral as they had nothing relevant to offer. No practical help. No care for the children. No rest for herself.
I have to admit I am baffled. How can a household containing four disabled people, including three young children with disabilities, and a fifth person with a serious health condition, get no social care at all? Why, when the Authority has been ‘involved’ with the family for years, does Petra have to keep going on the same weary round, knocking at the same closed doors?
Why is Petra, as a learning-disabled adult, not entitled under the Care Act to support that will promote her well-being in respect of her personal dignity, her physical and mental health and emotional well-being, and her domestic, family and personal relationships? Why has she never been offered advocacy services? Waking night care? Weekend and holiday respite? Short breaks?
Why are the children, all of whom have a genetic condition that in nearly every case causes learning disabilities alongside communication and health problems, not all acknowledged to have Special Educational Needs as defined by Section 20 of the Children and Families Act? Why has no-one from the Authority supported Petra to get EHCP provision for her son? Why is the genetics service refusing to make any referrals for the baby before December?
Petra, according to her internet friends, is at the end of a stretched-to-the-extreme and frayed-to-snapping-point tether. She is trying very hard to do it right, but she can’t manage some of the things that have been suggested, like applying for Direct Payments. Last weekend, they say, she was talking about asking to have the older children taken into care. Her friends persuaded her to call Social Services’ out-of-hours line again, and once again she got no immediate help… but the following day she got a call from her GP, saying that he had been contacted by the service and told she was unwell and mentally unstable. Petra, furious, shamed and frightened, assured him that it was ‘just because she had been a bit tired’, got off the phone and back online and swore that was the last time she would ever, ever ask for help.
Unless someone can suggest a way to sort this out fast and effectively, I’ve a nasty feeling that the next time her Authority’s Social Services department hears from Petra, will be when she shows up with her older children, their suitcases and a speech along the lines of, “You’ve been telling me for years that I should do better and don’t need help. Well, I can’t and I do. Since you’re so clever, it’s your turn to see how you get on. Let me know how it goes.”
Who could blame her? I am generally a fit and healthy person; I have just one disabled child, who has high medical needs and learning disabilities but is mostly well-behaved; and in spite of all that, some days I am on my knees. I can’t imagine looking after three children with disabilities, two of whom are bouncing off the walls 19 hours a day, never mind doing it all as a person with a disability myself.
And then what? In ten years’ time, will both the children be in, or on their way to, ATUs? I wouldn’t bet against it. Yet I would equally put money on it being avoidable, if just a little support were put in to keep the strains on this family at a manageable level.
That no help is forthcoming is chokingly, nauseatingly shameful.
I must be spending far too much of my time reading off electronic devices these days, because I was thumbing through my copy of There’s Always Something or Other With Mr. Neary, and when I had read the 1 September 2012 entry, my first impulse was to start jabbing the page with a forefinger to add a comment. Oops.
One of my more eccentric computing tutors used to say that if paper had been invented after the silicon chip, everybody would think it was the bees’ knees. “You don’t need batteries! You can build your own basic matrix from plant fibres! You can write to it with a carbon stick! And the refresh time is up to a thousand years!” As this was well before the invention of the tablet computer, he didn’t add, “But however hard you poke at the side of a book, you won’t find a backlight for reading under the bedclothes!” I have to remember that for myself.
Anyway, the piece in question is about Steven Neary’s twice-a-year visits to the psychiatrist. The trick-cyclist seems to be a rather unpleasant fellow; when Steven proffers his hand, as he has learned it is polite to do, the psychiatrist refuses to shake it. He then avidly notes the distress that this can cause Steven and blames Steven’s resulting behaviour on his father and support workers for ‘failing to set boundaries’.
If Mr. Neary senior remonstrates with him, the psychiatrist goes into Sly Game Playing Mode: “It looks like the conflict increases your anxiety, Mr. Neary”.
I want to ask Dr. S., “That being so, why are you provoking conflict? What are you getting out of making Steven miserably disoriented and his father stressed? It doesn’t seem a very professional way to act, more a sociopathic/sadistic one. Quite apart from professional considerations, to refuse to co-operate in a conventional exchange of courtesies is simple oikish bad manners. You’re being plain rude.”
Steven’s father once tried to let Steven down gently by suggesting that Dr. S. had a sore place on his hand, but it didn’t help, as Steven then wanted to see the scab. I have a fantasy in my head of Mr. Neary telling Steven the truth, and reminding him in the consulting room: “Dr. S. doesn’t shake hands, remember, Steve? Dr. S. doesn’t shake hands because…?”
“Because he’s an arsehole, Dad.”
Another corker of a Laughing Boy tale from the MyDaftLife archives posted by Dr. Ryan to Twitter today. LB’s commitment to putting reality (as he saw it) out there into the world is fabulous, and his dedication to dressing to suit himself is equally delectable.
No less impressive is his mother’s determination to let him be himself, in all circumstances. Yesterday, at Connor’s inquest, she even corrected her own barrister’s clumsy use of language:
Barrister: From an early age you knew something wasn’t quite right with Connor?
Dr. Ryan: Not ‘wasn’t right’. He was different.
Salute you, ma’am. There speaks a mother who is definitely good enough, plus a whole lot better than that.
I’d like to think Grenouille has been similarly encouraged to be an individual. If the reactions of the respite carers are anything to go by, I think we’re getting there. The carers were in at the weekend, a long-time worker and a new one who was on only her second training shift.
The senior carer was grinning broadly as she did the handover, but didn’t say anything to explain her amusement. I raised my eyebrows at her, but she gave me the tiniest shake of her head. At the front door, she said, “See you soon! Always a pleasure!”
I said, “I’m coming out now. I need to put our car in the garage once the drive’s clear.”
Both the carers got into their cars and started their engines, then the senior turned her engine off, got out and began wiping the windscreen.
“So come on, what gives?”
“Oh, I know I keep repeating myself, but that kid of yours cracks me up.” The senior carer began to giggle as the new carer drove towards the gates.
“What happened this time?”
“Well, I was helping Grenouille with something and we were joshing around like we usually do, you know, having a bit of a leg-pull.”
I do know. This particular carer has teenage children only a little older than mine, and talks to G and Eldest in the same matey way that she talks to her own offspring. It’s always perfectly judged, and G is developing a nice line in repartee.
“So..” The carer’s voice was splitting with mirth as she remembered, “…G gave me the stink-eye and a telling off, as usual, and New Carer said, ‘Is she teasing you, G?’ and I said…” the carer snorted with laughter “…you know, pretending to be all innocent, I said, ‘Would I do a thing like that, G?’ But G just gave me another of those looks, didn’t answer, so I said, ‘Go on, you not got anything to say?’ and…”
The carer was now gasping with laughter, “…and there was this other pause and then G said, – ahahahahah! – G said, totally straight-faced, ‘My Mum always says, if you can’t say something nice…’ “
The carer doubled up over the bonnet, roaring, then straightened, wiping her eyes. “And that was it. Didn’t even bother to finish off the phrase. It was like, that’s all you’re getting, deal with it. Oh, I was in stitches, properly put in my place, but New Carer didn’t see the funny side at all. I think she thinks it’s inappropriate to kid around with a disabled child. Unkind, she thinks. But you know, I know G is more than capable of dishing it back out. Sharp as a tack, that kid, as well as hilarious. I think it would be patronising not to treat G like any other teenager.”
She gave a final hiccup of laughter, heaved in a big breath and looked up the drive to where the tail-lights of the other carer’s car were disappearing down the road. “She’ll learn. I’ll make sure she does.”
Sunday mid-morning and I am standing at the kitchen counter in a domestic trance (peeling carrots, listening to the Archers Omnibus on the radio and not paying much attention to anything else) when I am rudely interrupted by a stinging swipe across my backside. The carrot and the peeler clatter on to the worktop as I wheel round.
“Ow, gerroff, Grenouille! I wish you would give over with this swatting my behind malarkey!”
G’s face is alive with unrepentant mischief. “It wasn’t me. It was the Invisible Man.”
“In a pig’s ear it was the Invisible Man, you wee monkey.”
“Have you seen him?”
“The Invisible Man.”
“Eh? Of course I haven’t seen the Invisible Man.”
“That proves it.”
“If you didn’t see him, it was the Invisible Man.”
Well, it’s at least as logical and convincing as some of the excuses I’ve been hearing elsewhere lately.
Just love today’s repost from Dr. Ryan, about LB and his relationship with Chunky Stan the Jack Russell. Although LB was indifferent to the other family pet, Bess, he had a tight bond with Stan, who could get him to do things he wouldn’t do for anyone else’s asking.
The fact that LB could bond with Stan was encouraging for me. Grenouille has been bucking for a while now for a medical alert assistance dog. I think it’s a fantastic idea, but I do have concerns. Quite apart from training, care, walks, insurance and vet bills, the huge fly in the ointment is that G is scared of dogs. Scared of any animal really, if they are within potential contact range. It’s the unpredictability of a live creature. A ladybird on the windowpane can cause a shrieking exit from the room, and a cat glimpsed from the kitchen at the far end of a friend’s hallway was enough to provoke the screaming abdabs and a panicked scramble over the table, scattering chairs, to the safety of my lap.
Animals on the telly, in books or glimpsed through the car windows, are another matter entirely. G liked the pictures of LB and Stan.
“Is Stan a service dog?” G doesn’t use the term ‘assistance dog’; the string of sibilants is too hard to produce.
“Don’t think so, but it looks like he was very helpful to Connor, making him feel safe and loved, doesn’t it?”
“I know lots of service dogs.”
“What service dogs do you know?” I say, thinking G will probably mention Choccy, the ‘anti-wandering’ Labrador who is is clipped to his partner’s waist-belt when they are out, and who is trained to sit firmly down on his substantial and muscular bottom if she tries to do a runner; or Duke the general-assistance dog, whose patient presence helps keep his partner calm and on-track with general activities.
G, it turns out, is thinking in categories.
“Oh, Guide dogs, yes. For people who…?”
“Can’t see. And hearing dogs.”
“Hearing dogs for the deaf, yes, that’s another one.”
“And die-bee-tees dogs.”
“Hypo alert dogs for people with diabetes, very good. “
“It’s a hard word to say.”
“I know. It’s difficult to say some long medical words.”
G gives me The Look. “They’re nearly ALL long.”
I choke down a crack of laughter. “They are, at that. Do you want to have a shot at this one?”
G hesitates, taking a breath. I watch the lips rehearse the word silently, then G says on a great outrush of air, “Mepilexy dogs.”
“Close enough, love.”
Sunday morning. I am in Grenouille’s bedroom, setting out medications and switching off the overnight machines, before starting to unwind G’s bedclothes, which have somehow got twisted over and over into a thick rope. G’s eyes open.
“Good morning”, I say, tugging at the sheet, “and goodness me, whatever has happened here – have you been fighting crocodiles in your sleep?”
G gives me an old-fashioned look, then disappears briefly as I finally get the sheet pulled up flat to the head of the bed. I straighten and smooth the quilt and fold the linen back down over it.
G, reappearing, says decisively, “Actually, no. Bad guys.”
There is a beat’s pause, then G adds, “I don’t like crocodiles. Much. But bad guys are worse.”
Sent to my MP, with copies to friends and family to ask that they do likewise: