Author: Alison Chalmers
The person who most inspires me infuriates me. The person who most inspires me seldom talks to me. The person who most inspires me makes me cry and want to hide from the world.
Will you get a move on – the minibus is due any minute – you’ve already cleaned your teeth you don’t have to do it again. But, yes, you do up and down, side to side, like I taught you to do so many years ago. Slowly, deliberately and with the precision of a dental hygienist. Now it’s time to brush your hair, scrape, scrape, scrape from scalp to end, scrape, scrape, scrape from root to tip. The minibus beeps outside, I fling open the door but you are busy with bobbles tying up your hair, twisting it this way and that, admiring your reflection in the mirror. The minibus beeps, I fling your coat at you and you let it drop to your feet. Bending like an old woman you pick it up, brushing imaginary dust off it, and place your arms in the sleeves. Holding the big buttons you slip them into their holes, squint. I remember the buttons that have littered our life – buttons brought round by pre-school portage, play buttons the size of saucers for stacking, multi-coloured buttons for sorting in shapes, colours and buttons for counting one to ten and back again but never further. The minibus beeps, I let you leave – squint. Have a lovely day I say, mmuhmm you reply as you drolly stroll to the minibus, stepping over imaginary cracks so you don’t break your mother’s back. Your day begins and so does mine.
When you were born you didn’t come with a manual or game plan. But everyone knew something – you would be musical, you would be good with animals and I would get a lot of love. Everyone had a cousin who came out of the woodwork – one who was good at knitting, another who worked in a charity shop and another who did her mother’s shopping. But you were a baby – you couldn’t knit, sing or shop and would you?
But you had better ideas and bigger plans, you would trick me. Quickly you learnt a smile would melt me, trying to roll over would have me cycling your legs in mid air and splashing in the bath would have all the rubber ducks in town come home to roost. We began to go places together, to visit friends who would smile sympathetically, copious cups of coffee but when the front door closed I heard them think thank God it wasn’t us, darling.
I learnt a new vocabulary for you. Words like cherry stones sat in my mouth waiting to be spat out – mainstream; milestones and Makaton to a plethora of professionals. Professionals who I didn’t know existed - preschool, portage, paediatricians - all working for you. You too learnt new words duck, dada and down. You learnt to crawl and slowly you sidled along the sofa until the day came when you stepped out – unexpectantly but with a look of triumph on your face – See see look at me. I can walk. I can run. I can play ball. We spent hours visiting Sesame Street. Spending our sunny days in the company of Bert and Ernie and the letter ‘o’. Jim Henson gave you a good grounding in letters and numbers whilst I reacquainted myself with American film stars and jazz singers.
Nursery now notioned. Local school for local kids. An old Victorian building with high windows and even higher ceilings. Toilets in the yard and frozen milk curdling on the heating pipes. But the teacher was warm and wise and you even managed to get a little support from the local authority for her. You settled in but did not exactly join in. Two mother girl hens took great delight telling me what you had done – how you sat under the table during story time, took off your wet knickers and waved them over your head, ate the play-doh.
Another year at nursery was recommended with its ‘broad and balanced curriculum’ and ‘multiple learning opportunities’. The mother hens flew off and you were left on your own, still the smallest and still the silentest. I too lost the friends I had made that first year as they moved on and talked about reading levels and pencil control. But we were received into Reception the following year. When I told the teacher you ‘came’ with five hours support – she asked if this was a day – no I replied a week. Her face fell and so did my heart.
Did you really try to fit in that long year? Why did you climb the monkey bars to the top during assembly? Why did you break pencils during sums and why did you get a Golden Award in front of the Ofsted inspector? It couldn’t last could it, for either of us? One day we were called into the headmistress’s study with its leaky gas fire and alarming collection of china pigs – we’re not meeting her needs, she told us, you need more play opportunities, more trips to the post office than writing letters, you need to go elsewhere, anywhere, but not here. We were dismissed.
I went to visit a special school for you for, for pupils with moderate learning disabilities, – low set in its own grounds. I went in antennae and hackles raised. I went in all guns blazing, questions shooting from my lips, how would they...., what would they.... could they....? And came out relaxed, reassured and revitalised. This was the school for you with its small classes and smiling staff. Pictures of pupils and pictures by pupils adorned the walls – at child eye height. Nothing seemed too much trouble for the staff, not in a world weary ‘we’ve seen it all before’ way but ‘hey that’s interesting but we can deal with it.’
So you settled there – the only girl in a class of ten boys. Always Mary at Christmas, in her virgin blue smock and plimsolls; always the Hindu bride in RE, in her sari and plimsolls and one year even Dorothy with Toto in her gingham dress and plimsolls. You learnt table manners which I could only aspire to, pushing peas onto your fork as if to the manner born. OK, your writing was a little large and illegible and you tried to count countless times but reading, well what do you know, – you excelled - reading everything from headlines to street signs, labels to fables.
Your impish personality shone through and your way with words never ceased to amaze – neologisms a speciality – bras became ‘nipple bags’ and miniature poodles ‘talking socks’. You went away on an adventure holiday with school, amusing the staff when you told an elective mute to be quiet.
But time may be a great healer but it wasn’t on our side. As you grew and flourished you also grew up and had to move on, leaving this primary place to progress to the ‘Big School’ on the other side of town. I visited, walking through a fug of smoke at the school gates, to get to the headmaster’s study. In front of me a pupil was being physically escorted down a corridor leaving behind a slipstream of swearing.
I felt nervous; the school had a peculiar aroma of stale bodies, spot cream and hormones. Little did I know that this smell would come, linger and live in my house for the next four years. But, as most of your friends were going to this school and there were going to be girls in the class and, more importantly, there wasn’t anywhere else for you, you went there.
And in time I grew to love this ramshackle school of huts and portacabins; with its Scottish showman head teacher who played electric guitar at Christmas, swapping Silent Night for Black Night. The dedication of the teaching staff was high; as many of the boys (yes, as ever there was a higher male to female ratio) were in single parent female families the male teachers appeared to go out of their way to be positive role models. They took them hill climbing, helped them run Thrash Metal music nights and ran a youth club twice a week. Sometimes it worked and at other times the boys would climb on the flat roofs taunting teachers from on high. You discovered that you enjoyed cooking and brought home curries, coleslaw and cupcakes. Work experience was done in the school kitchen where you peeled carrots, scrubbed tables and served chips to your fellow students. I have lovely photographs of you in your ‘kitchen whites’, hat slipped at a jaunty angle like some errant sailor on shore leave.
You moved up through the school, a ‘pleasure to teach’, always ‘willing’ if a bit ‘disorganised’ and in ‘need of adult support at all times’. The girls, I had been so keen for you to know, soon left you behind in a whirl of lipstick and lads. You became interested in boys too, in your own way. Mooning and grinning over the biggest, fattest and, in my eyes, ugliest boys you could find. To them you didn’t exist except as ‘Little Louise’ from the taxi. They may have broken your heart but they broke mine too.
Posters appeared on your bedroom wall. Posters of boys all flashing smiles and eyes with names like Ben and Brad. I hated them and their false promises. Lyrics of undying love were cut out and stuck on your wall. You began to write a diary in your large looping writing. I must admit I did try to read it but couldn’t, not because of any sense of injustice more because it was illegible and just seemed consist of a certain boy’s name.
Then It happened. If only I knew what It was I could deal with It and help you to deal with It but I don’t; all I know is It happened.
You had taken your mobile phone into school, like everyone else, to flash and fondle in front of your friends. It never came home. The headmaster offered a reward for anyone who ‘found’ it but it never came home. You collected key rings, jangling off your school bag, family and friends bought them but one day they were gone, not in the quagmire which masqueraded as a bedroom, just gone.
Then one morning I found you looking in the bathroom mirror at the gap where your adult bottom teeth never grew in. You didn’t notice me and I silently watched you as you murmured a mantra ‘I am pretty, I am pretty’. I slowly slipped out, not knowing what to say or do. Maybe I should have held you and said ‘you are pretty’, maybe I should have reassured you that the dentist said anytime you wanted replacement teeth it could be arranged, maybe I should have asked more about what was going on in your life but you went to school every morning and came back every evening without complaining or indeed without saying anything.
I look back now and see that you were turning inward, unhappy but unable to articulate why. So, for my part, it was easy to ignore and not ask too many probing questions – how’s school? OK, how was youth club tonight? OK, how do you feel? OK. So, everything was OK, wasn’t it?
Sixteen knocked at the door and with it a change of school – kids from your school weren’t meant to go on further – a couple of years short term college courses followed by a life on the dole. We saw ex students in town occasionally mooching about and verging on the feral. However, because you have a libel label, a named learning disability, I could try and get you a place at the sixth form college for students with severe learning disabilities. Located within the local FE college this placement offered rebound therapy (the new name for trampolining), independent travel (the new name for going on a bus) and the community (the new name for Tesco’s coffee shop). It wasn’t ideal but because it was in the local education authority control you would still get speech and language therapy – which had finally paid dividends after years of putting teddy in the bed, teddy on the bed and teddy under the bed (the boring Boehm concepts).
Whilst we waited for confirmation of your place your behaviour got stranger. You stopped washing your face which you had slavishly done. Your clothes which you had put away in drawers, to which you had attached hand written labels to, lay discarded on the floor, unclean and unloved. You became withdrawn, withdrawing to your bedroom every evening to lie in bed with your CDs playing and the TV on with no sound – the ultimate in multi-media.
Your behaviour became erratic from someone who could go anywhere and hold a basic conversation I began not to trust you, you might shout out or say something ‘inappropriate’. You began to want to hold my hand again, something I assuaged due to memories from my childhood of adults with Down’s syndrome clumping hand in hand alongside mummy.
You started college but you weren’t any happier. In fact you got worse. You got angry with yourself, fighting an internal enemy, lashing out. You stopped doing things you had once liked, like Friday night guides. Your face became a miasma of tics and facial expressions – one eyebrow permanently quizzical – in best Roger Moore style. Term progressed and you started plucking at your clothes and slapping your thighs. As I come from the ostrich school of mothering I ignored it for so long. College called me to discuss your behaviour, you were leaving your pocessions about and not ‘engaging’. But when I went to college the frenetic pace was bewildering. A large girl was screaming in the toilet, staff smiled at me and told me that’s what she did every lunchtime; a large skinny boy bounced by closely persued by two male members of staff. Some boys played pool while another obsessively straightened the newspapers on the table beside me.
It all came to a horrible head the day of the breast cancer run. I had put your name forward to take part as I thought it be a fun, non-threatening thing for you do with staff and some fellow female students. I was the only parent that stayed behind to cheer – the others presumably grateful for extra kip on a Sunday morning. You were not happy. You stood alone, whilst the other girls chatted and high-fived. Staff approached you and started talking but you were having none of it, you backed away and began kicking out. When the starter’s gun fired you were dragged round the course every step of the way – you were last in the race – that wouldn’t have mattered if you had enjoyed yourself but you hadn’t. I was shocked, ashamed and saddened.
I approached your paediatrician. For the previous seventeen years it had always been a bit embarrassing seeing her. No everything is good, no she’s in perfect health, no she’s not overweight, yes her eyesight is fine and her she passed her hearing test with flying colours. Now, just as we were about to lose paediatrics we needed her for the first time – ever. She listened carefully and she spoke to you alone, but you couldn’t communicate, you had long since given up doing that. She suggested you might be depressed and referred us a learning disability psychiatrist.
In the meantime college broke up for the summer holidays and you seemed happier. You had started a new youth club and things seemed to be working out there – the leader always had a positive word to say – something I had grown unaccustomed to as all college reported ‘Louise has lost her bus pass, again’, Can you send in more lunch money Louise spent it in the community’ ‘Has Louise brought Kevin’s CDs home by accident?’
We got your appointment and travelled to a large stone building on the edge of town. The outside of the building was if the First World War had never happened whilst inside it was if Vietnam hadn’t. The psychiatrist too thought you were depressed and prescribed a course of Prozac – I didn’t know whether to laugh or cry when I saw the prescription read ‘sugar free’.
Summer jogged on and so did you – you became more chatty and the anger subsided, the facial tics and gestures lessened to single finger flicking. You went on a play scheme and had a good time with trips to the beach, the cinema and museums. I held my breath, had we ridden the storm and when you went back to college you might be your old self again?
First day back on the 6th September you stepped out of the taxi, plucking at your clothes, you charged in and went straight to your room. The escort shrugged her shoulders and jumped back into the car, at least she could leave, I couldn’t.
Slowly but markedly it struck me. Maybe these behaviours were your way of telling me you weren’t happy with college. I researched Individual Budgets fantasising about a package so tight you wouldn’t have a chance to be unhappy – PAs would take you places and do exciting things with you – every day would be like play scheme. I approached the brokerage people – can’t do anything as you don’t have a social worker they said. I rang Children’s services oh but they wouldn’t have you because you were nearly 18 and the Adult Social Work Team wouldn’t touch you because you weren’t 18. Pulling rank I rang your Connexions worker and told her our tale. And lo and behold a social worker was allocated and, more importantly, she suggested another school placement at a nearby special school, which had recently started a 6th Form and so far had only 10 students.
Yet again I visited a school. This school was local, a short bus trip away without a ‘Oh Lord Bless’em’ escort. This school was small, this school was self-contained. This school was great. I took you up for a visit and miracles of miracles they were baking cakes. You got stuck in straight away. Well I was told you did, because they sent me away, so they could get to know you.
This school could see no problem about ‘accommodating your needs’ and after a meeting with your ‘current placement’ I got the feeling they were glad to see the back of us. Paperwork came through easily and swiftly and taster days were arranged.
When I went to collect you that first day I did so with trepidation. How had you been? What had you said? How had you acted? The teacher smiled and regaled me with the tale of when seeing a toaster you had asked for a piece of toast please. She was astounded, college had done a great PR job and told her you only spoke in single words. She handed me some colour images – there you were working on the computer, talking to staff and students, singing and laughing!
You took to the taster days fantastically with only one slight hiccup. One afternoon when I went to collect you there you were being walked hand in hand down the corridor by a teaching assistant from your old 6th Form college. She told me she had been observing you to monitor your behaviour and you hadn’t been as happy today. I bit my tongue, lips and teeth to not say – I wonder why?
So today is the first day. Will you get a move on – the minibus is due any minute – you’ve already cleaned your teeth you don’t have to do it again...
The person who most inspires me I love deeply. The person who most inspires me never ceases to amaze me. The person who most inspires me makes me laugh and want to shout from the rooftops
The publisher is The Centre for Welfare Reform.
The Person Who Most Inspires Me © Alison Chalmers 2015.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.