Public Appeal to our MP

The purpose of this letter is to highlight the fact that even when funding and entitlement are there, services are often lacking. My family has suffered significant stress and difficulty because of a lack of service provision to meet assessed needs, as carers it feels as if our rights and welfare do not matter, for our disabled young people the sad truth is that we cannot continue much longer, no-one loves them or can care for them as well as we do, but our inevitable collapse, if services don’t get sorted soon, will mean that they would have to be cared for elsewhere. I have made this letter public for us and others like us……

Dear Mr Jones MP
I am writing to you to raise my concerns about the appalling difficulties in obtaining reliable local support services for autism and challenging behaviour my family has experienced in the last few years. We find ourselves again and again in the position of lacking the support services we desperately need, to cope with the demands of caring for our two severely disabled young people.
We regularly encounter issues with getting the support we need. The main issue is with a woeful lack of local Short Breaks (respite) options for our young people, through both adult and children’s services; when a service fails, stops or is unavailable we are left with no replacement for the missing service for months at a time. These issues are often out of the control of not only the Care Managers, but also their managers, there are simply not services available to meet the assessed needs. Time and time again it is my husband, my non-disabled adolescent daughter and myself, who not only have to meet the increased caring demands these gaps in service create but also have to cope with the impact these deficits cause on our own health, well-being and autonomy.
As a family we have made many official complaints but we have lost faith in these having any long term beneficial effect to the services we receive. Our most recent complaint against NYCC Children’s Service was taken up to Ombudsman level, before being resolved after the Ombudsman found a number of failings. However, we have still experienced significant gaps in service this year. We complained to NHS Continuing Care, regarding the thirteen month delay in establishing overnight respite services for my son, when he reached adulthood; despite their apology and offer of additional respite to ‘make up’ the missing time, we did not receive any of these recompense respite nights and have again been without any overnight respite breaks for him for several months. On top of this, his day care service has had staffing issues which resulted in more missing support. Over the summer break we were missing a total of 45 hours respite services, per week, for both young people. All involved agencies agree that for us to continue in our caring roles under such pressure is untenable, yet that is exactly what we are expected to do until services can be sourced. Additionally, we have been told that it is not possible to have a contingency plan in place in case of emergency, such as someone needing urgent medical treatment, as no emergency care is available. It’s precisely because services cannot be conjured out of thin air that we need to plan for emergencies and in fact Carer’s UK state “Every carer who has an assessment should be asked about emergencies and offered help to plan for them”.
Furthermore the constant need to fight to access other support services from health, social care, and education exacerbate the stresses of an already challenging family situation, often on little or no sleep.
After the Winterbourne View scandal the government response laid out “clear, timetabled actions for health and local authority commissioners working together to transform care and support for people with learning disabilities or autism who also have mental health conditions or behaviours viewed as challenging. Our shared objective is to see the health and care system get to grips with past failings by listening to this very vulnerable group of people and their families, meeting their needs, and working together to commission the range of services and support which will enable them to lead fulfilling and safe lives in their communities.” (Transforming care: A National response to Winterbourne View Hospital, Department of Health Review: Final Report) We should be being supported to look after our young people at home and, in time, within their local community and this shouldn’t be at the cost of their or our own, health and welfare. Without appropriate, reliable local services this, in reality, cannot happen. There is an identified ‘spike’ of autism in the Harrogate area and we are sure that we are not the only local family struggling. We appeal to you, our MP to speak up for us and others like us.
Yours sincerely,

The Grant Family.

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Hazel Talking

what a clever girl view here https://www.facebook.com/photo.php?v=762149537144538

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A Landscape Through Time

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A Landscape through Time

The ramblers finally reap reward
at top of hill where they pause,
gasping for breath, hearts pound, calves burn
as about them they look, look and turn,
to see the Dalescape laid out below
what formed this magnificence? They want to know.

The stone was laid in ancient warm seas
where, waving branches like trees in a breeze,
generations of corals lived, died,
sediment compressed, thrust to the skies
by tectonic forces immense, slow,
from which hills silently grow.

Ice Age glaciers carved the Dales,
meltwater traced ghost rivers trails,
leaving waterfalls long since dry,
erratics, spewed from glacier foot, lie
marooned on hilltops, where children play
imagining giants arranged them this way.

The first men came just to hunt
leaving behind only tools too blunt.
Lynchet terraces marked the fields,
dry stone walls drizzled the hills,
where man began to leave his mark
on this modern day National Park.

Legions of boots and hooves
gouged out telltale grooves,
of Roman roads, drovers lanes.
Monastic flocks from vast Fountains
driven miles over the hills
to distant markets in the vales.

Industry and mining took its toll
as man dug out lime, lead and coal.
Mills, canals, Ribblehead’s great span
devised by engineers Victorian.
Tarmac rivers wind near and far
bringing tourists and the age of car.

The ramblers take part themselves
As hiking boots mark out trails:
Pennine, Nidderdale, Coast to Coast,
all have spectacular views to boast
and ramblers, awed, try to define
the essence, of a landscape through time.

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A Day in the life…..

What a day today was! It started off OK, the first day back at school after half-term and I was ahead of the game with lunch boxes, bags, money etc all ready to go. Jamie was ready and waiting for his school bus and very happy to go off to school when it arrived. Hazel was not so happy; I had just got her moving to get washed and dressed when bang, bang, bang, hammering sounds from next door. Not good, fingers firmly wedged in her ears she did not want to get ready at all and persuasion resulted in her kicking off. Big time! It took the two of us three quarters of an hour to finally get her ready for school. I’m now sporting a fine new set of bruises on my arms. We’re both feeling very worried about how stressed she is getting about going into school in the mornings and hoping we get things sorted out for her soon. No time to feel sorry for ourselves though, it was back home and straight into the chores, so whilst I rang social services disabled children’s team to discuss our concerns, Paul gets on with washing the car, which is filthy after a weeks of being out and about with the kids. Mum comes to clean on a Monday so she Hoovers and tidies up. There is just time for me to deal with the laundry and prepare tonight’s dinner before a lady from Yorkshire Housing comes to fill in some forms for Hazel’s Disabled Facilities Grant application, for soundproofing her room; there is no doubt that this is needed after this morning’s incident! When the lady leaves I make us lunch, empty the dishwasher and attend to the washing machine again. I leave Paul wrestling with our household accounts and head off to the town. First stop Boots I’ve ordered some Bio-oil in the hopes that I can reduce the scarring on my arms from Hazel’s assaults, then there’s carrier bag of repeat prescriptions to collect from the chemist. Finally I make it into the library where I spend an hour working my next Open University assignment. All too soon it’s time to drop the bags at home before going to collect Jamie from school, where I’m greeted by a very happy Jim and a large bag of dirty laundry. No walk tonight as Jamie is wearing his ’emergency’ shoes, so we get back home and sorted before Paul arrives back with Hazel. She is in a much better mood tonight. We fall into routine and get on with dinner, baths and bedtime. In the midst of all this busyness Heather just quietly get on with her own thing, eventually arriving home from school for dinner, disappearing out then back by 7pm, bessie mate in tow. Hazel is settled to bed by 8.30, Jamie, well he may or may not go to sleep tonight, let’s hope we are lucky!

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Hope

I’m sitting in the hospital corridor waiting. A hundred thoughts are racing through my anxious mind, all clamouring for my attention. I take a deep breath to settle my nerves, but the stale, clammy, indoor, hospital air does little to settle me down. I glance at my husband, who is sitting next to me, he’s staring at his shoes. Lost in his own thoughts. My gaze moves to the trolley beside us, where our 18 month old daughter, Hazel, lies deeply sedated. Her cheeks are flushed red and a sheen of sweat dampens her pretty blond hair. A grey plastic heart monitor sensor pinches her tiny finger, whilst the monitor itself rests on the foot end of the trolley, emphasising how tiny she is. The nurse accompanying us stands silently, a bored expression on her face; as if she wishes she was anywhere else but here right now. She avoids my gaze as I look at her and I turn away taking another deep breath of fusty air.

I think of the people who ask me questions. The ones who ask of my little girl’s older brother,

‘When did you first realise he was autistic?’

I think back to those first visits to the old hospital, gone now, demolished and rebuilt into affordable homes; the children’s wards moved up the road, to the clinical, impersonal, District Hospital. I think of the questions, the assessments, the meetings. The being told that our little boy was disabled and not understanding what it meant, any of it.

It creeps upon you sometimes, stealthily, unseen, silently stealing a little more of your hope and expectations with each milestone. Sometimes you don’t even notice until afterwards. Like when you walk past the boys playing football on the field, parents hollering and screaming at the sidelines, sleek new cars parked nearby and younger siblings playing in the park; happy families. You slope past, hoping to go unnoticed as you attempt to guide your glaringly different child past the game without incident, and realise with a jolt that the lad that just scored a goal, to the jubilation of his sideline parent, is the same age, went to the same toddler group. The kick in the guts when you realise that will never be your son. Then the forbidden tears come, unexpectedly, and are stifled again. This is not death. No, but it’s the loss of the child you expected to have, it is berevement in its own way, and quietly, without memorial, you bury the phantom child that never was. You dredge up reserves of courage and resourcefulness you never knew you had and learn to celebrate the tiny triumphs and love the unique specialness, whilst the headstone of perfection lies heavy in a corner of your heart.

I know now, that the signs were always there, the difficulties existed from birth. I know now, after the birth of his two younger sisters, what milestones my son never reached, how much help he needs to make progress, how reliant he will always be on others to help with every aspect of day to day life. I know now what the words ‘your child has autism’ mean.

I think of my youngest daughter. How one day the light in her eyes switched off. I think of the winter day, when barely past her first birthday, she woke in the morning with pus oozing, horrifyingly, from her ears. I think of how the antibiotics worked on clearing up the infection, reduced her fever, and how her eyes stayed dead. I think of the niggling concern, when she didn’t respond to my voice, her name. I think of the hearing test to which she didn’t respond, just like her bother years before. I think of how her face now stays expressionless even when I try to play with her. I close my eyes. Silently I pray.

‘Dear God, please let it be her hearing, please let it only be that she needs grommets. Just a simple routine operation that will restore normality. Please. Please.’

A door opens.

‘Mr. and Mrs. Grant?’ A middle aged woman wearing a white coat and clutching a clipboard looks at us enquiringly.

‘Yes.’

‘Come in. I’m Dr. Coates, I’ll be conducting the hearing test today.’

She shows us where to sit, as the nurse wheels in the trolley.

‘As you know the procedure is called the Auditory Brain Stem Response Test.’ Dr. Coates starts to explain, in a soft calm voice. ‘We will be attaching some electrodes to Hazel’s head and measuring her brains response to the hearing test, to see how well she can hear. If there is no response from a child’s brain that that would show that they cannot hear anything.’

We both nod our understanding.

The audiology room is surreally silent. Even the whirring of the fans of the computer equipment seems hushed. Without being told so, you feel you must be quiet, like you are in some kind of weird library and must speak only if absolutely necessary and even then only in whispers.

As Dr. Coates and her assistant attach wires to Hazel’s head and connect these to their computer equipment, we sit in silence. The nurse hovers, slightly less bored now, but still distanced from us.

The test starts. I can hear small noises coming from the headphones over Hazel’s ears, little buzzes and squeaks. I start to pray again.

‘Please let it be grommets, please let it be grommets.’ I repeat over and over in my head.

Soon, it is over. Dr. Coates looks up.

‘Her hearing is fine, so she doesn’t need grommets. I’ll send the results off to the Child Development Centre; they may well want to see Hazel again…’

Dr. Coates is still talking, my husband is answering her, but I do not hear what they are saying. I’m vaguely aware of standing up, leaving the room, the corridor seeming suddenly noisy after the artificial silence of the audiology room.

The nurse wheels Hazel, on her trolley, back out into the corridor and we start to head back towards the children’s ward, where we will wait for the effects of the sedative to wear off before going home. She turns to me, the most animated she’s been the whole afternoon. She looks relieved.

‘That’s great news, isn’t it, she doesn’t need grommets.’

I look into her smiling face and feel a sense of resignation, my last hope that my instincts were wrong has gone.

‘No.’ I reply. ‘It’s not good news, because if her hearing is fine, then that means my daughter is autistic.’

*

            A year has passed and we are sitting in a circle, with various Child Development Centre health professionals, for a multi agency case meeting about Hazel. This is where we will be officially told that she has autism. The room is filled with laughter as we laugh and joke through the meeting and occasionally the Paediatric Clinical Psychologist, who hasn’t known us for the years that many of the other people in the room have, gives us a quizzical look. Eventually I take pity on him and explain.

‘I’ve had a year to get used to the idea that Hazel is autistic, I knew when she had the brain stem hearing test.’

The Speech and Language therapist chips in. ‘It really shows you have been working with her, she has made fantastic progress.’

I smile. Not at the praise, that’s not my reward. I think of my daughter, the time I spend playing the interaction stimulating games I know so well from years of practice with her brother. I think of her giggles, the light in her eyes when she smiles and the hope that has risen from ashes.

1278 words

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Winter Wharfe

The river flows with menace,

a boiling torrent

of peaty turbulence.

 

Winter walkers tighten grip

on leads and little hands,

fearing accidental slip

 

into the wild malevolence.

 Yet the river holds fatal charm,

despite the walkers’ diligence,

 

it attracts, dares them near,

entrancing eyes. Until, blinking,

they recall their fear

 

and proceed cautiously,

along the riverside path,

in awe of nature’s wrath.

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Diamonds in the Rough

DIAMONDS IN THE ROUGH

 

‘I don’t know how you do it,’ said the sales assistant in the chemist’s shop.

I had just been telling her about our latest episode of sleep deprivation. Honestly, if I had a pound every time someone says that to me, I would be rich by now! When you tell people that two of your three children have severe autism and relate some of the things that happen, they always assume that it must be a terrible life. I admit, when things are not going well, like the time my ten year old daughter attacked me so badly in our market town, that passers by intervened to restrain her and the emergency services were called, I have moments when I wonder how I do manage. It is certainly possible to understand how some families just cannot cope and make the agonising decision to put their children into residential care facilities, but for all the bad days there are good days too, times my wonderful children make you feel proud and privileged to know them.

Stepping out of the shop into the bustling market square, I check my watch and walk out of town, down the hill to collect my daughter from her special school. She hasn’t been there long, but already we are seeing an improvement in her behaviour at home. It is now several months since she last attacked me. The school, however, are not finding her the easiest of pupils to deal with. I’m a little anxious about what mood she’ll be in this evening and, to distract myself from thinking about it, I chat brightly to some of the other local parents waiting for their children.

The children begin coming out; they are individually escorted to their parents by school staff. As Hazel comes towards me, my eyes take in her appearance, the expression on her face, the belongings she is carrying. Has she got everything? Is she stressed or happy? In seconds I have worked through a mental checklist, which will influence the course of the evening and night to come. She looks tired but relaxed, that’s good.

‘Bye Hazel’ says the young blonde teaching assistant, as she hands her over to me.

Hazel’s eyes flicker, but she doesn’t respond.

Taking her bag from her I prompt; ‘Say goodbye.’

            ‘Ba,’ says Hazel, with a half hearted wave of her hand.

The teaching assistant gives me a brief wave of her hand, before turning away to escort another young person out of the school.

            ‘Hello Hazel, did you have a good day?’ I say, not expecting a response. I rummage in her bag, for the home/school diary which will, hopefully, tell me what Hazel cannot. Today there is no message. Well it can’t have been a bad day then! Pulling out a small bundle of letters to home, I find a laminated certificate:

Student of the Week

Awarded to: Hazel Grant

Presented for: Super cutting and sticking and excellent numeracy.

The certificate is already crumpled from handling; I show it to Hazel,

            ‘Good girl Hazel, well done!’ I back up my words with signing.

Hazel looks at it, smiles and signs ‘good’. She might not be able to talk, but there’s a lot more going on in that head of hers than she is often given credit for.

Arriving home, I switch on the gas under the vegetables prepared for dinner earlier in the day. In a household like ours, where there are always more tasks needing to be done than can be realistically achieved, being organised is imperative. Inevitably, we spend a considerable amount of time in meetings with an array of professionals who seem to be chasing a pointless paper trail of procedures that prevent them from supporting us effectively and us getting on with the practicalities of day to day life. I imagine a wall with parents one side and professionals the other, everyone continually banging their heads on the brick wall of bureaucracy.

Settling into the better organised evening routine of a day unhindered by meetings, Hazel and I wait for the rest of the family to come home. His arrival heralded by the car being reversed down the drive, my son, Jamie, comes bounding in, followed by my husband.

‘Spurs, are on their way to Wembley,’ Paul hollers. He will have also done a quick-fire assessment of Jamie’s mood; the fact that he’s singing football songs means all is well.

Jamie might be seventeen now, but he is basically a very large toddler, totally reliant on us to meet all of his needs. Affectionately nicknamed Tigger, he literally bounces through life. Hyperactivity is part of his character, it is a regular part of our life that the day may dawn without him having actually been asleep at all the night before; leaving us remarking on the irony that someone who is unable to speak can spend all night making so much noise. He has a wonderful falsetto yodel, considering that his voice broke a few years ago!  This evening it is good to see that our ‘Tigger’ has his bounces back after being very unwell with a nasty cold. He is also very affectionate tonight and comes for a cuddle, bending down to rest his head on my shoulder, he flutters his ‘too long for a lad’ eyelashes at me, gazing up with his gorgeous eyes, whose colour are an elusive, greenish, blue/brown.

‘Ahh, mmmmm, dadadada, mmmm.’ he babbles contentedly with the cheesiest of grins on his face.

Eventually our other daughter, Heather, arrives home, having, in the way only teenage girls can, made a ten minute walk home from high school take over an hour. She is frustratingly normal and after grunting an unintelligible reply to greetings and dumping her schoolbag in the middle of the hallway, where it is an immediate trip hazard, ensconces herself in front of the computer and plugs herself into online music and social networks. This is where she’ll stay for as long as she can get away with. She’s a different person at school, where she is seen as a quiet, thoughtful and potential       A-star student, but for us, long gone are the days of ceaseless childish chatter and, like most parents of gruesome adolescents, we can’t wait for her to grow out of the antisocial and rebellious stage.

The evening progresses in the normal manner, organised chaos. Whilst Paul attacks the floor under the dining table with a dustpan and brush, I tidy dishes with the somewhat dubious ‘help’ of Hazel. Jamie was upstairs watching an ancient and well loved kids video in his room, but suddenly appears downstairs, stark naked. This is what difficulties with social interaction look like at our end of the autistic spectrum!

            ‘Jamie, trousers.’ I say to him; he only understands very simple sentences.

As he goes back upstairs, I think back to just a few months ago, when I would have been trailing up the stairs to assist him with this simple task. Out of the blue one day, to our surprise and delight, after endless years of trying to teach him dressing skills, Jamie had put his pyjama bottoms on, appearing downstairs, trousers on, inside out, back to front, but unmistakably, independently, on! As we celebrated as if we’d bought a winning lottery ticket, Jamie had escaped back to his room, not liking all the fuss.

Hazel has now taken herself upstairs and, finished with the clearing up, Paul goes up to check on the pair of them.

            ‘Hey, what are you doing to him?’ I hear him exclaim.

Thinking to myself that the evening had been going a little too well, I run upstairs, to see what minor catastrophe has occurred. There is blood everywhere.

            ‘Jamie’s had a nosebleed and Hazel was dabbing at his nose with some tissue.’ He explains.

            ‘What a good girl Hazel, were you trying to help, that’s very kind’ I say and sign to her.

Not only am I grabbing at the opportunity to use the word ‘kind’ in context, but this is a prime example of how such children can prove all the theories wrong. People with autism are, apparently, supposed to have little or no empathy, but here is one severely autistic person coming to the aid of someone more profoundly disabled than herself. It’s not a one off incident either. I remember the night when Jamie was sick whilst we were asleep. In the morning we discovered that Hazel had tried to clean him up, then got him some clean pyjamas and helped him put them on.

Paul and I exchange looks of mutual understanding and pride.

 ‘Aww, what a little sweetheart, she is!’ I say.

Like raw diamonds my children may look unrewarding, but look a little deeper and you will see glimpses of the glittering purity and pricelessness that lies within. They truly are diamonds in the rough.

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