I was seven when we moved from the town to the country. I missed my best friend Ria, but village life offered many compensations and soon I had far too much going on for her absence to make a huge gap in my days. My favourite new activity was ballet classes – white dress, pink sash and hairband, ribboned pink leather practice-shoes, lining up heavy wooden high-backed chairs in the Village Hall for an impromptu barre – which is where I met Vicky.
Vicky’s Mum and mine agreed to take it in turns to sit through the lessons and walk us the mile home. One week we would be accompanied by my Mum with my little sister in the pushchair, and the next it would be Vicky’s Mum wheeling her sit-up-and-beg bike with Vicky’s little sister in the child seat behind the saddle. One sunny afternoon, Vicky’s sister had asked to get down, and was trotting along the pavement in front of us. I said something about how little Naomi’s walking was coming on, and Vicky gave me a funny look.
“How old do you think my sister is?”
I thought about it. Naomi was only slightly taller than my sister and didn’t speak as well as her, so… “Three?”
“Nope. Ten. She’s ten. I’m the youngest in our family.” I looked at Vicky walking gracefully, dancer-fashion, with her feet at ‘ten to two’: skinny as a twig and my height despite being nine months younger than I. I looked at the rounded, stumpy figure of Naomi, trundling along towards home. It didn’t make sense. Ten?
“She’s a Mongol”, said Vicky.
This didn’t make sense either, and I said so. Mongols were people who came from the steppe-lands between Russia and China, like the Huns in Peter Dickinson’s The Dancing Bear, not schoolfriends’ little big sisters. Vicky laughed. “Not a Mongol from Mongolia. It’s just that her eyes look like a Mongolian person’s.”
I had never noticed. “So why is she so little?”
Vicky shrugged. “She just doesn’t grow. She will never grow up – she will always have the mind of a child. The doctors say she’ll be stuck at a mental age of two. That’s why she doesn’t come to our school. I don’t mind. If she weren’t like she is, I wouldn’t be here. Mum says she would have stopped at two kids, if Naomi had been all right”.
In later chats with my mother, Vicky’s Mum, a slightly brusque lady at the best of times, made no bones about her feelings for her middle child. “She didn’t feed when she was born. That enormous tongue of hers just lolled about, she couldn’t suckle. I thought she would just quietly slip away in a week or two. Would have been the best thing for everyone. But there was this nursing sister on the ward who took her off and kept giving her bottles. I could have slaughtered that nurse. She had no idea of how much trouble she was going to cause me.”
I did not understand the more pragmatically infanticidal statements in this part of the conversation, but the tone in conjunction with the body language gave me an impression of complex feelings of hurt, resentment, guilt and anger behind the words, so I picked out what seemed like a safer topic. “Naomi has a big tongue?” Another thing I hadn’t noticed.
“Oh yes. One of the reasons she doesn’t talk properly. That and her deafness. When she was a baby, her tongue hung out of her mouth. Looked awful. I thought, that nurse may have landed me with a defective baby to bring up, but I was damned if it was going to look an idiot as well as be one. Every time that tongue poked out, I poked it back in again. She got the idea eventually.”
Naomi didn’t start school until she was ten or so. Prior to that, she had been one of the ‘deemed ineducable’ children, given no schooling or educational therapies. Unsurprisingly, she never learned to read or write, and her speech remained difficult to follow if you weren’t used to it. But she got into a routine of day-centre, activities, outings with peers and support workers. She moved into a Mencap group supported living facility in her early thirties, and was very happy there.
After fifteen or so years, the prevailing wind in social care swung round against such housing, funding arrangements changed, the facility was closed and Naomi was ‘decanted’ into a smaller establishment. She missed her friends; the support in the new place was reduced; she found it difficult to stick to a sensible routine without help and prompts; and she drove the other residents half-crazy by having her television on at full volume in the wee sma’ hours, so that she could watch – and hear – it in bed, without having to wear her deaf-aids. The new place eventually evicted her. She went into an adult foster care placement, then another, then a 24-hour supported place. Each time it was further from home and away from the people and places she was familiar with. Vicky has spent, and still spends, substantial chunks of time negotiating with funding authorities, care providers, and clinicians, trying to make marginal improvements to her sister’s situation.
Vicky and I started our own families in the same year. She had every antenatal test under the sun for each of her pregnancies, because after a lifetime of watching her sister and her family struggle, she didn’t want to have to do it over again. I didn’t have any tests apart from 20-week scans, because my partner and I had decided that we were going to welcome whichever babies came to share our lives. It was just as well that we had had that conversation in advance, since second time round Grenouille showed up, with a non-Down’s genetic rearrangement and rather more health problems than Naomi ever had. Eldest was still a slightly shaky conversationalist when Grenouille was a baby, but loved big words and, shooting for ‘sibling’, informed a relative that “Mummy has had my goblin”. It seemed inadvertently apt for my little changeling.
But from starting out in Naomi’s same second-sibling position, Grenouille has had a very different experience, although I can’t guarantee that it won’t end up in a similarly miserable place. Loved to bits by all the family and adored by Eldest, treated with patience and to welkin-ringing cheers for every achievement, Grenouille has flourished. On the official side, there were early-intervention physios, OTs and speech therapists; a Portage worker, then an Early Years peripatetic teacher; Makaton sign-language from babyhood to pave the way for the spoken language that didn’t emerge until age five or six; a one-to-one aide at nursery and dedicated TA support at school; a Statement of Special Educational Needs; a differentiated curriculum to fit a spiky ability profile. The therapists and school staff have all been wonderful (it helps, of course, that Grenouille deploys an irresistibly charming personality) and with a – very – few notably regrettable exceptions, so have the healthcare people. I can’t help but speculate how different Naomi’s life would have been, given similar chances and supports.
The Local Authorities, on the other hand (four and counting…), have been pretty uniformly awful. I have written reams of letters, amassed lever arch files stuffed to bursting with documentation, made countless telephone calls, sat through a five-hour SEND Tribunal, had to argue annually over support hours, educational therapies, transport provision and reasonable adjustments to allow time to access extra-curricular activities. I have done a complete research project on how to apply to the High Court for Judicial Review – although (thankfully, since legal action ain’t cheap) so far the mere threat of Judicial Review has sufficed. The idea that responsibility for Grenouille’s educational future will transfer to this bunch of incompetents at age 16, is too hideous to contemplate, never mind that they might be able to cut us, Grenouille’s family, out of the loop altogether once Grenouille hits blow-out-eighteen-candles day. The Authority staff don’t understand Grenouille, they don’t understand Grenouille’s condition or needs, they don’t seem to understand the legal weight of some of their responsibilities. Worst of all, they give every indication of not having the faintest conception of the extent of their own ignorance, nor even of the possibility that they might be ignorant in some respects. They get things wrong, and no sooner have they been set to rights about whatever-it-is, than they go and screw up on the next thing. I don’t know whether the awfulness of local authorities is a continuing echo of the attitudes that disabled Naomi even more than her extra 21st chromosome, or whether the dire attitudes we have encountered in relation to Grenouille have been specially new-minted, all shiny for the 21st century; but either way they are unacceptable.
It’s debatable whether Grenouille is a goblin, but some of the statutory authorities have the definite appearance of ogres.