Claire’s Story, told by Pat Dolan
Just like any other mother to be. I had dreams for the child I was carrying. We all in the family, wanted a girl, especially Tom. Tom said of course she would be beautiful. Her brothers also had plans for the new baby. They were much older Paul was 23, Mark 21 and Peter 12. We had all waited hopefully over the years for this much wanted child, and at 43 I thought it was my last chance to have a baby.
To everyone’s delight, I delivered a girl. You can imagine how joyful we all were, and especially me, I thanked God that she was well and a wonderful blessing for us all. Not only was she the first girl for us she was the first girl in the Dolan Family for some years.
As with all parents our dreams are affected by time and experience. Nevertheless Tom and I would share our dreams for her together. Everybody celebrated especially our neighbours and friends and on a beautiful Saturday in July, she was baptised Claire Marie, her three brothers standing proudly by the font as Godfathers. The Church was packed with friends and parishioners.
Claire progressed like most children, she smiled, chuckled, said Da Da, waved bye bye and bunny hopped; she was either a joy to everybody or making a nuisance of herself. Everyone was interested in her progress.
I didn’t start to get anxious until she was about 12 months old. She was not progressing. Claire would just sit happily smiling, never wanting to play with her toys. We bought her every different plaything imaginable the moment there was a new one on the market; we were sure that each new one we bought would be the one that would trigger things for her. She certainly made no move to weight bear.
My doctor tried to reassure me, “The trouble with you mothers is you want them to jump through hoops, she smiles doesn’t she?” The health visitor also thought she was fine “She’s nearly doing what she should be, stop worrying about her, she is a very contented baby” and of course I was delighted to have an excuse not to worry and enjoy my little girl.
It was on our 25th Wedding Anniversary, Claire was then 16 months old, we were having a party at home and late in the evening I looked round and someone had brought Claire down stairs from her cot. “Was she crying?” I heard someone say, “No, she was just sat there smiling”. They were all commenting how pleasant she was and wasn’t a bit bothered by strangers picking her up. I overheard someone say “But is that normal?” Alarm bells started to ring.
After our Silver Wedding, we went on holiday. We stayed in a hotel where we could put Claire to bed and monitor her at night. All we ever heard was her chuckling to herself, she hardly ever cried – Claire was so pleasant with everyone. People kept telling us how good she was and such happy baby. When we went on the beach we would see toddlers about her age who would be playing in the sand and toddling about – I can remember Tom asking them what age they were and comparing them to Claire.
Those alarm bells started to ring again and I knew I had to go and see a Paediatrician: someone who really knew what they were talking about.
After all, I thought it couldn’t be that bad or everyone would have noticed. Even the woman in the paper shop said her son was a late developer. It’s amazing how you cling onto the things you want to believe.
Eventually, after what seemed like a lifetime of waiting and worrying we got our appointment to see the Paediatrician. We expected him to do lots of blood tests, x-rays etc., but all he did was look at her and give her bricks to pick up and hold. He tried to get her to pick things up with her finger and thumb … we were willing her to do it. I tried to tell him that they were not colourful or interesting. He encouraged Claire to stand on her feet, she didn’t. It was so painful to sit there and realise she was doing nothing that the doctor was asking her to do, all the things which were expected of her at that age.
He spoke to us very solemnly,” Your daughter, although I am not sure whether it is a particular syndrome or cerebral palsy, is severely disabled; I doubt she will ever walk or talk” and I was so distressed by him saying she would not talk, I just wanted to leave the room but Tom stopped me. I had to listen to him say “She will need constant care all her life and eventually institutional care”. He was talking about my beautiful, peaceful under-demanding daughter as if she wasn’t really human, someone badly impaired who would need a lot of care and money spent on her.
We both left his office in deep pain. I will never forget those next weeks; we could hardly communicate with each other; we were blown apart. We had no one to turn to; we were terrified of telling our sons and upsetting them too. Our daughter, like our sons was a perfect gift from God. She couldn’t be as bad as he said, could she? How did he know? We would find another specialist. Perhaps he would tell us something different, that she was not so disabled. Looking at Claire we found it difficult to believe she was as disabled as the Paediatrician had told us.
After the earth shattering news, I expected someone would call and explain a little more sympathetically, but it was sometime later when a social worker finally rang me. I said we were devastated and would need time to fully understand what has happening to us. She said “You must understand your daughter is not normal and never will be”. She told me she had a daughter who was similar to Claire and she was in Offerton House which was a place I would never, ever let my daughter take up residence, it was an appalling place.
Offerton House was an institution built to house the retarded and subnormal. When the Home closed in 1993 some of the residents had been there for most of their lives and then when it closed they were sent out; most had never handled money before; most had never been on their own before; some of them had some support but not enough for people who had never done anything before. They were put in small flats whose neighbours did not understand them or the people themselves found it hard to adjust. I met a woman who had been institutionalized all her life, she had been left at Stepping Hill Hospital by her mother when she was young and spent time in homes until ending up at Offerton House; she was delighted to be out of the home but found it difficult to make friends and had no idea how to manage money. Her flat was full of dolls – something she had never had all her life.
The social worker said by the time your daughter is 20 you will have retired and it would be impossible for you to care for her. These was the most devastating and overwhelming words ever spoken to me and I was tormented with the most dreadful fear of what was to come.
Tom was in denial and assured me that by the time she was 5 years old everything would be all right. He was able to bury himself in his work and forget for a few hours the ordeal which we would have to go through.
I was with Claire all day and everyday. I remember hearing someone laugh and I thought I would never laugh again. People were embarrassed when they saw us and didn’t know what to say. I had a roll of film from our Silver Wedding which needed developing and I was afraid to take it, as then I was ecstatically happy, we had everything, our sons, our daughter and each other. Now I just felt numb.
Tom and I didn’t know what to say to each other, we were both in pain and unable to comfort one another. We were afraid to face our fears.
Dreams are not for the disabled, only nightmares, and it’s sad, but even these we couldn’t share together. Tom kept saying “Everything will be all right, I’ll make it all right,” but I knew that this time he couldn’t. We had a close and fun marriage, we had been able to comfort each other in our adversity, but not this time and this hurt us both terribly. My dreams for Claire were dashed and also those I had for myself. The dream of picking her up from school, hearing about the day’s events, the paintings that she would do, chatting to other mums, sewing her name on the pump bag and watching her on sports day.
We knew nothing about disability, we’d never needed to. I’d never known anyone with a child who was disabled. I remember seeing those dreadful school buses with lots of people looking odd with awful haircuts and badly dressed, the sort of thing where you look away quickly in case anyone sees you looking. Just grateful it wasn’t your child or anyone you knew. These were the fears and prejudices we grew up with. We saw it as a personal tragedy, which must be coped with by the parents.
What we found harder to bear were the friends who found it difficult to talk to us and Claire. I knew everyone was very unhappy for us, but it was a very lonely time. We got Mass cards and letters about special people with a special child. But we didn’t feel special and I didn’t want a special child I just wanted my Claire back. Our sons helped us enormously – Paul printed a T-shirt with “My name is Claire. Please talk to me” which caused quite a stir and some people did talk to her, but I have to painfully admit that some friends we hardly ever saw again. Because most of us know nothing of disability, only myths and legends.
Disability can be very frightening.
We were told we mustn’t worry we would have lots of professional help and of course there were services which were there to help us, but our whole lives changed. Claire was to me of course still beautiful and doing the things she did and the whole family adored her. But now everything was different, when we went to see a doctor we would be segregated. We had to go to the Child Development Unit. When you are disabled you are separated from birth. Everything you do is apart from others.
I now know that segregation is completely unjustifiable. It is morally offensive. It contradicts any basic human rights. To separate anyone disabled from society causes fear and misunderstanding. We were told Claire needed to go to a special nursery and there was one I was told of which had a good reputation. It was a few miles away, but we could go by taxi or on a special bus with other children like Claire. I wasn’t sure I wanted Claire to go to nursery at the age of 2; my other children didn’t go to nursery at 2, but I was told that Claire needed special therapy and it was the only place she would get it. I wanted to go with her but was advised that it wouldn’t be wise or necessary, she would be well looked after and I would need a rest from her. I was always being told she was not like other children, or how hard it would be for me as Claire grew older, constantly told Claire would be very difficult to manage, never being able to play out with other children, but in need of a special nursery.
We were always seeking highly paid specialists who had ideas of what we should be doing with Claire. I did one course on behaviour modification, another course run by an occupational therapist, but most of the courses encouraged separation and in my opinion this never helps and it didn’t help Claire. I went on any course that was going, and I was always asking people to give me permission to go on anything to do with disability even if it was not specifically for Claire. It was a way I distracted myself, and I thought would help her.
We went to Bobath in London for 2 weeks; they use a multi-disciplinary approach. This was run by Professor Bobath and his wife who did not charge for the therapy but only asked for donations. Each day we made our way to the centre in the middle of London and sat with therapists who were assigned to Claire for an hour and a half. We watched as Claire was painfully put through her paces, she would look at us and cry, my little girl who hardly ever cried. It was so distressing, but we still put her through it as we thought it was for her own good. At the end of the second week they told us that because of her mental disability there was little they could do for her but to find a school that used the multi disciplinary approach.
When Claire became disturbed with these therapies (and who could blame her?) I was told that holding her in my arms very tight for hours even though she may resist, might help. I really believed the experts. Since then I have met many parents who have done the same thing as we did and it’s so painful to watch them struggle through all the therapies. But we as parents all have to go through it ourselves. We have to understand that therapies on their own do not work, we cannot cure we can only encourage. I remember when Claire was at mainstream primary we had a visit from a speech therapist. She spent a lot of time with Claire and told me after her visit, she could not give Claire anything more than the other children were giving her.
I so wanted to be a good mother and I had so often heard the professionals talk of the mothers who didn’t care. I was on a medical fix-it model and very much into therapies. I took her to hydrotherapy, music therapy and physiotherapy every week.
She had to wear a back brace for her curved spine and leg splints at night.
It took a long time for me and more so for Claire to realise what I was doing, trying to make her whole, perfect, to make her walk and talk; and yet her gifts were in not walking or talking, but at the time I couldn’t see this.
We went to special nursery where I insisted I go with her. I felt if it was important to be with a non-disabled child in the first years of their lives surely it was more important for Claire and me to be together. I soon learnt that if children don’t speak it gives licence to the teachers and assistants to talk incessantly to each other. ‘Special’ as I have now learned does not mean exceptional or unique it means segregation and there was nothing special about that Nursery.
I still remember the look of horror on their faces when I told them we were leaving, to attend an integrated nursery called Charnwood which at the time was a forward looking nursery and which included all children.
They told me that I was in total denial and would not get the help that Claire needed, which was the therapies, speech, physio and occupational.
I don’t think we were anti-professionals; but overall Claire’s and our treatment by them left us angry and saddened. They came into our home, telling us how hard they worked, many never on time, usually late for our appointments, saying how busy they were and telling us of their day when all we wanted was to get on with the meeting.
They made sweeping statements based on the briefest actual contact with Claire or ourselves. If we disagreed with them they got angry and told us we didn’t appreciate them or their efforts, which were only to help us. We were constantly told we did not understand our daughters disabilities, and didn’t realise she would always be a burden and we certainly didn’t realise how difficult it would be as Claire got older. We were told that like a lot of parents, we were in denial. Whatever we did was frowned on.
For the next few years I was amazed how frequently the word ‘never’ crept into people’s vocabulary when talking about people with disabilities. Professional people seemed anxious to use it usually coupled with the word ‘afraid’. For example “I’m afraid your daughter will never be independent,” they would say, or “I’m afraid your daughter will never talk or be able to attend a normal school”. I was also amazed that when children don’t talk they are placed in special schools where most children can’t talk. When children have behaviour problems, the irony is they are placed with other children with behaviour problems and when children need help to get around they are placed in special schools where everybody needs help to get around. We bus and taxi children, sometimes many miles away from their communities – the very places they need to be recognised, understood and valued, to spend their days in an artificial world. They are often hassled by a succession of different therapists who assess, discuss and very occasionally act.
The experts said Claire needed specialists and therapies.
The difficulty in talking to professionals we have encountered about our daughter’s support needs is that we were talking about totally different things. The professional view about disability is based on the myth that they are a burden, abnormal and must be treated differently. Such attitudes only perpetuate exclusion. Also Health & Safety rules which not only overburden the disabled person but also the families. There was one professional who helped me enormously. She was a Child Psychologist, Dr Ria Reason. She spent hours with me, telling me I knew Claire better than anyone and was doing what was right for her and me. She threatened to put up a banner in my home saying “I am the expert”.
She gave me a lot of confidence and although I often wavered I am still extremely grateful for her intervention.
We eventually, decided that Claire needed to be in the Community and needed friends but we were afraid because the Paediatrician had told us that all the therapies would stop. I was then still in a panic about cures. We enrolled her into Charnwood, a nursery where everyone was welcomed, where parents were made welcome, and there we stayed and played together for 2 very happy years. I was encouraged to stay with her so that I grew with her and understood her disabilities.
Charnwood Nursery was a new forward looking Nursery run by Grace Wyatt who realised that children with disabilities needed to mix with the non-disabled so that they could both benefit from growing together.
She played along side toddlers as well as those who couldn’t toddle; they learnt together. It was such a good time for her and for all of us in fact. She shared her ups and downs of everyday life with her young friends. She had choice; she had opportunity, just the same as everyone else.
I was able to dream again, I had a vision, it was clear to me. The vision was for Claire to lead an ordinary life with her friends in an ordinary school. Very few people understood this vision. They thought of it as a castle in the air. That vision over the years has dimmed occasionally and altered a great deal, but it was not a fantasy. It did materialise.
Perhaps it is a good time to explain a little of Claire’s disabilities. Claire had Rett Syndrome, which is a complex neurological disorder, which occurs usually in females and affects them throughout their lives. Claire’s complex and challenging disability results in a lack of mobility and verbal communication. She needs support in everything she does. Her three specific barriers to learning are a delayed response, apraxia and hand dysfunction, which are a direct result of a chromosome abnormality, which increases when under stress. Despite all the difficulties Claire’s communication cut through many barriers. She communicated with her eyes and her smiles and when she didn’t like what was happening she would look away or close her eyes.
My aims for Claire were to enrich the total experience of her life by providing opportunities, which would encourage personal growth and allow her to reach her full potential, and independence and knowledge of the world around her, not to find a cure, and to accept her disabilities.
We were both so happy in Nursery that I thought nothing would ever change, but at 5 it did all change. It was then that the next milestone or millstone arrived. Mums were very busy sewing names into their children’s pump bag. “You’re a big girl now” they were saying and “You’ll soon be going to big school with your friends”. Some children were excited, some were apprehensive, but they would be going together, But not for Claire: she was to tread a different path and without her friends. So we polished up her wheelchair and went off in a taxi to a special school.
Where was the busyness of children involving themselves in productive activity? Where was the noise of little voices and where were Claire’s friends? No matter how you look at it, disablement all thrust into one place is an awesome sight and I’ll never forget the feeling it gave Claire and me when we first saw it.
Claire had to fit into the world as it was and when this was not possible she had to be shut away in some specialised institution where the emphasis is on dependence not independence. Disability is seen as a personal tragedy, which must be coped with by the individual. It is this approach, which casts people with disabilities in the role of pathetic victims, or super heroes, who in either case can never be just ordinary people. The power to change seems to lie with the professionals with their talk of therapies. Claire’s life I handed over to them.
The special school was outside the Authority but according to all the professionals this was a centre of excellence where we were told Claire’s needs would be best met. We were told that because this was a special school and unlike the frowned upon integrated nursery she had attended, the school would adapt to Claire’s needs. We had to fight the authority to send her there and it took many interviews and correspondence before they agreed to pay for her there.
You can imagine how I felt when after only a few weeks I knew we had made a dreadful mistake, but to my shame and to be fair to me, not knowing what else I could do, it took me two years to get her away from there and my nightmares became actual again.
We were under no illusions about Claire’s condition, we were very much aware of her lack of motivation and severe disabilities, but we believed she deserved every opportunity to receive the best quality of life we could offer her and we were told that a special school could offer this. We soon realised that Claire had to adapt to the needs of the school. For example they tried for 2 years to toilet train her, but Claire was unable to be toilet trained; the trauma and distress this caused her was quite unacceptable. She would try to rub her eyes after she had eaten and her hands were dirty with food and each night she came home with her glasses, which she had to wear, caked in dinner, which she could not have possibly seen through. Her clothes which smelled of urine, were dirty and stained. It didn’t matter how many change of clothing I sent they were always the same – even her coats were wet. It was so undignified for a young child to always be smelling of urine. Each morning I would fill her bag with wipes, sprays, tissues anything that I thought would make things better for Claire, but she always came home in the same condition.
An eye specialist had tested Claire’s eyesight and his report, which was sent to the school said, a normal child of her age would reach for her glasses before getting out of bed. After trying to be as diplomatic as possible about the things which were happening to Claire, I arranged for an interview with the class teacher. I was met by a very angry NTA who told me the teacher was not able to see me and that with ¾ hourly toilet training and having to change Claire clothes so often, it was impossible to do any more for her. Even though I had told them that the Paediatrician had said it was doubtful that Claire could be toilet trained.
I also received a letter home telling me that they were removing Claire’s glasses as in their opinion she did not need them. I was concerned Claire was not drinking enough and I sent juice in for her every morning. They also told me they were reducing her intake of fluid to help their toilet training programme. They were also removing her from the dining hall as she was disturbed by the noise of the other children. This letter was signed by the NTA.
Yet at reviews where we sat with a room full of professionals who told us how well she was doing. Surrounded by these professionals how could I say she was regressing? I was not allowed to voice my opinions and was made to feel inadequate and ungrateful.
She became a very disturbed and anxious child, who we were afraid to take anywhere. She became afraid of everything different. She was showing marked developmental regression. No one would listen to my pleas for help; I was classified as being ungrateful, demanding, and my standards were too high. The school suggested we find somewhere else for Claire.
I knew there must be somewhere else better for Claire, so we approached the Authority who suggested that I went with the Psychologist from the Authority to look round some special schools. This time I knew what I was looking for. However everywhere I went I was upset by what I saw. For example a support worker was standing behind a young child holding his head back and pouring in a drink. When she saw how alarmed I looked, she said “We have to do this; the mother is always complaining we don’t give him enough to drink.” Another child who was blind was lay on the floor and being patted on the cheek with a plastic spatula to the beat of the music, each time the child was patted she would flinch and eventually started to cry but no one seemed to react to the child’s distress. When I asked the psychologist what he thought of these and other incidents I had witnessed, he said he hadn’t noticed anything.
I was in despair; I had no-one to discuss this with. I didn’t know what to do or that there was anything else but special school and so I picked the special school nearest to our home – at least the Headmaster seemed approachable, and at least they did not think that it was possible to toilet train Claire. But the spectacles were always the same, never clean. During playtime the children who could walk were separated from the ones who were in wheelchairs. Claire couldn’t even see children playing. To my shame I stopped going in the school for a while as I was always upset with the things that were happening to Claire, or the other children. I went to collect her one lunchtime and found in the dining hall, two support workers, one of which was giving Claire her lunch shouting and fighting with one another. There were so many incidents it would be impossible for me to tell you, but I have over the years heard many horror stories of life in special school.
We were always having meetings with the Headmaster and after one review in which the teacher told us of all the activities Claire would be involved in which was very impressive. The Headmaster said to us after the teacher had left, “Well, if you believe that, you will believe anything, there’s no way Claire could be involved in all those activities”.
He said “What do you want for Claire?” We were so confused by this time we didn’t know what we wanted for Claire; he said “Have you not thought about approaching your local authority to see if they would have Claire for a few hours a week in her local mainstream school with added support?”
I couldn’t imagine Claire being able to cope after all she had been through in the special school. I knew also that the Authority would not approve as they were not happy about her going to mainstream nursery. She had also regressed so much she was so frightened of any noise or anything different. I was also afraid of approaching our local school. What would other parents say, would she disrupt the class, would she be bullied, and made fun of by other children?
I knew I had to try and afraid as I was, I knew I had nothing to lose. I had to get her away from what the experts called Special School.
I approached our local Catholic school and the Head surprised me by saying he would be delighted to have Claire two afternoons a week as long as I supported her. Very apprehensively I started Claire in mainstream school. Never mind the pump bag – we got great delight in donning the school uniform like the rest of the children.
I was amazed at how the children reacted. Even though most had never seen anyone disabled before, they accepted her unconditionally. She was pushed, patted, kissed and stroked and given wheelies in the playground. The children stopped to talk to her, not over her and to me, as so many less understanding adults. She not only participated in the schools’ curriculum she sometimes became a central part of it. Craft and design technology lessons were taken up with making ramps for the school to accommodate Claire’s wheelchair and painted during art lessons with bright coloured flowers. I was astounded to see how favourably the parents and staff accepted her there. Especially as at special school most of the parents and some of the staff objected to her being there as she had learning difficulties. I was amazed how in the disabled world there is a hierarchy of disability.
Inclusion worked in mainstream school because the school and the parents wanted it to work. Most teachers were apprehensive and maybe a little nervous; they had not had a child like Claire in their school before. Most had never even met anyone like her before. Some were brave enough to admit this and asked questions about why she was there. I told them she just wanted to be included in every aspect of school life and have friends who would interact with her. Most teachers were open minded and positive, they were willing to learn about her and more important learn from Claire herself.
We soon realised it opened up whole new world for her. She was invited to parties, children would call at our home to see her, she herself became a different person: she was much happier and calmer, our whole household became a much happier place.
But we all had to evaluate our feelings and reflect on what we had learnt before we could move on. We learnt that the journey began with us, in our homes, in our lives. We had to look at our own preconceived ideas, our intolerance of anything different and our fears. We also had to learn that inclusion is not only about including disabled people but also all people whom we find different or difficult to tolerate. We would never again accept the medical or charitable models of disability, which sees the disabled person as the problem, which always presents them as defective. These were models as parents we were expected to accept and collude with against our daughter.
We soon wanted more for Claire but the school we were attending had stairs for the juniors and they were not happy about us going on into juniors. So with cap in hand again I went off nervously to the next school.
The Headmaster there was very positive. He believed his school was a community school and all were welcome. And so with a few hours which we had begged from the Authority, using our attendance allowance and a few hours given us by the special school we started to look for someone to support Claire. I still can’t believe our luck when we found Carole, who eventually supported Claire for over 13 years. We then integrated Claire full-time into primary.
But I have to say that for a child to be accepted into mainstream school the role of the support worker is vital. They must believe that inclusion is the only way forward and be 100% committed. Their input into the curriculum and the social life of the school cannot be made in isolation.
In the beginning it was important for Tom, Carole and myself to get to know one another and this meant Carole giving us lots of hours listening to us tell her about Claire and ourselves. We had to be honest with one another, we had to tell her of our pain and how we felt we had been let down by the services we presumed were there to help us. We all knew we had to build a relationship with each other and Claire. This we knew would be the key to a successful integration.
Having someone outside the family to share my vision helped immensely and as that person was Carole, her source of strength was immeasurable. We worked together over the years to bring that vision to fruition. We have laughed, cried and prayed together. Claire has been such a powerful initiator of change in our lives and of those around her. Carole would also tell you that Claire has supported her through some hard times in her life as much as she has supported Claire.
As in the last school, primary was wonderful and apart from the constant reviews which the Authority insisted on and the constant worry that they may demand that she return to special school, we were all able to dream again, but this time we had Claire’s friends to dream with us. You only had to see how wonderful her peers were with her, she now had real friends of her own age and they stayed with her all through her years at primary, secondary and sixth form helping us to make decisions on her behalf.They altered the games so she could play. They were keen to help give her a drink and to put on her coat.
If they were on holiday they sent her cards and because one of the boys was always away in France during her birthday, he would ring her to wish her Happy Birthday. When his father asked him who he was ringing, he explained it was Claire’s Birthday, the father said “but she doesn’t speak”, “No” the boy said “but she can hear me and I know she knows it’s me”.
I remember Tom taking her to a boy’s birthday party, which was in a sports hall. When he got there he realised it was a Football Party and she was the only girl. “Don’t worry”, said one of the boys, “she often joins us when we play football, she loves being pushed fast in the wheelchair”. There were so many instances of this kind too numerous for me to mention, but all just as captivating. Some of the nightmares were still with us at times especially because of the Education Authority.
There was one thing I never thought could happen: that Claire would be able to live independently. Even though I was told by a man who was involved in Inclusion, that it could happen, I thought he didn’t understand Claire’s complex difficulties, and tried not to think about when she was older but enjoy the here and now, I didn’t want to think what would happen to her if we were not around.
When in school we left all the special programmes behind us, as we wanted to focus on the things Claire could do, not on what she couldn’t do.
In Limburg’s book on understanding Rett syndrome she says:
“The important thing is to focus on what the girls can do, not on what they cannot do or do not do. It is also important to understand that ability is not only that which can be measured by external achievements – ability is everything that exists within, whether it can be expressed or not. The aim must be for the girl to use her abilities better, but this aim must be defined to suit her needs, not to meet our needs of seeing her demonstrate those abilities”
When she was leaving Primary, it was heralded as a success even by the Authority and because of this we thought that getting into Secondary would not be a problem. How very wrong we were. It took 14 gruelling meetings where Tom and I sat in a room full of professionals and education officers. It was so hurtful to hear them talk negatively about our lovely daughter. A friend who was with us said that they talked of her as if she was a caged lion. We wrote endless letters and had many sleepless nights. We were at our wits’ end, when some friends and parents of Claire who thought she would automatically go with them to Secondary, found out what was happening. They had not realised we had no choice, and that we had always had to fight for her to be in mainstream, and had to go through excessive and overbearing reviews. They supported us by writing letters to the Authority and the school, asking them to allow Claire to be with them in Secondary. We were also lucky to have the support of one of the Priests in our parish. Just knowing they were with us supporting us helped immensely and I will always be grateful for their love.
Although the school was not accessible for a wheelchair, it was more important that Claire went with her friends. Eventually the school and the Authority allowed us to give it a try.
If I had thought that the Education Officers in the primary sector were dictatorial bullies, I certainly wasn’t prepared for the Education Officer who was in charge of the secondary special needs. He was the most intimidating bully I have ever met; he would cancel meetings an hour before they were due, his secretary saying that he had another meeting. He would arrive 20 to 30 minutes late for a meeting without saying anything and then leave suddenly; when we asked a question, another officer would say: the person who could answer that has just left the room. He would shuffle papers, read notes and look out of the window while we were speaking; he even threatened me at one of the reviews, which was held at the school, by saying if I caused any problems at all during reviews, he would pull Claire out of the school immediately. Of course he did not say that in front of the Headmaster, but while Carole and I were alone in the room with him. He even told Carole “Do you realise she won’t have any friends at Secondary? They won’t want to know her”. I knew there was no one who would have listened to me and Claire’s inclusion would have been at risk.
The Secondary School wanted us to cross the T’s and dot the I’s. But this wasn’t possible; we knew nothing of secondary education; we only knew that on the same principle as primary it would work. The head of special needs was terrified that we were going to make more work for her as she was already under pressure with the work she had. She asked Carole to take in the wheelchair without Claire in it, to see if it fitted through doors and in classroom. Carole quite rightly refused to go in with an empty wheelchair. Our first meeting with her was to organise a short programme for Claire to go in for a day a week before she started full time. Everything we suggested such as Drama, Religious Studies, which we knew she liked and she could easily be included in, she said was inaccessible. It was hard to work with someone so negative, but we were extremely lucky that after Claire arrived at the school she was most supportive.
I remember after a sleepless night for both Carole and myself, Claire was to go into Secondary full-time education. Carole went early so she could talk to the Head of Year and form teacher, she was so nervous, but when I arrived with Claire she was waiting for me with a huge smile on her face: the welcome she had received from the staff was enormous and she was so thrilled. Throughout the day Claire and Carole experienced many occasions when they felt this wonderful feeling of inclusion. For Claire it was when children asked to sit next to her and involved her in their work, when they helped her with her lunch, or to give her a drink at break, or simply hold her hand and share a smile. These were truly wonderful gifts that they shared with one another. For Carole it was when she walked into a classroom and the teacher gave her a welcoming smile and took time to have a few words to acknowledge her presence or to offer her a cup of tea. By the end of the day she was so confident and excited about the future not only for Claire but for the whole community. We soon realised it was much easier in secondary, there were so many more opportunities, the curriculum and timetable was more flexible. However, during our first term the dreaded Ofsted arrived at the school. They informed us that we had no schemes of work, no forward planning and were not following the National Curriculum.
As I had promised the Headmaster that he would not have to do anything, I felt I had to get down to work myself and with a lot of help from other people, worked out a very effective topic of work with the National Curriculum references with her schemes of work using the Carol Ouvrey “Educating children with profound handicaps”. It didn’t make any difference to the work she was already doing, but it sure did impress. Carole and I also had to forward plan, which was difficult as Claire was very unpredictable.
Carole had a camera and she took photographs of her during lessons and we made booklets of what she was doing for the Headmaster and staff to see. It not only showed everybody what she could do, but made a recording of her at school. We displayed these along with her national curriculum and schemes of work in the staff room and the teachers were surprised how simple it was to include Claire and how easy it was for her to be involved. Not only did we work hard with her schemes of work, we wrote articles to put into the school magazine. We always tried to involve everybody in Claire’s inclusion. When her friends wanted her to have a modern lightweight wheelchair they sponsored two of the teachers who did the London Marathon.
As with all teenagers things change. Parties were now evening discos and as Claire had such a short day, parties were not for her and so as she grew bigger and needed more support, neither were sleep-overs. We had to do different things to encourage relationships and when in her first year they were doing Roman History, we invited friends home, where we researched and planned, bought ingredients and made a Roman meal. We dressed in Togas and had a great feast. We made a tapestry of the Battle of Hastings, which took months of work over the weekends, with different friends coming each week. It won prizes for the school and was hung in the school hall and was much talked about.
Some friends would help her with her work and some would take her shopping into town. They would either go on the train or we would drop them off and pick them up later. Letting Claire go out on her own with friends was frightening for us, but a wonderful experience for Claire. When the BBC was filming a series of programmes called Old School Ties, they filmed them at school and in town in McDonalds and shopping for cosmetics.
The students were always finding different things that could be adapted for her wheelchair.
Most of the staff at the school was incredible; they would often tell Carole if they were doing something they thought Claire could be involved in, like trips out or a particular lesson they thought she would enjoy. This way she met even more of her peers. When Claire was enrolling for 6th Form College, the Vice Principal of the College asked if he could shadow them for a day to see how she fitted in and what sort of work she did. The Staff at the secondary was so keen that he saw Claire at her best they told Carole to pick which lessons she thought would be best for Claire.
When the school went on a religious retreat, Carole, Claire and I were always invited to join them. It made Carole’s and my relationship with each other very lively and powerful and we could thank Claire for that. We were very grateful to the school for their support and their flexible approach helped Claire’s learning and created more opportunities for her.
In her last year Claire worked with year 11 students in Technology. They researched and designed communication aids for Claire as part of their GCSE project and they also won 1st and 3rd prize in the Rotary awards.
At the end of her years at Harrytown, during the Prize-giving the Headmaster spoke about Claire and when he said “I didn’t think when Claire came here we could offer anything, but not only has she received a great deal from us, she has given us so much more”, all the parents stood and applauded and I knew that all the hard work we had all done was worth it.
Having a good support worker is essential, someone who believes that Inclusion is the only way forward, someone who will be a facilitator, a promoter and must be able to work with other members of staff, who would be able to think on her feet and always be enthusiastic, dedicated and conscientious. And Carole, I am happy to say was all of these and more. She has shown everyone how to make inclusion a positive and successful experience. Her enthusiasm, energy and hard work, her willingness to help not only Claire but other pupils made integration into Primary, Secondary and 6th Form a huge success.
Claire along with her friends went into 6th Form College where we received a great welcome. They recognised the valuable contribution Claire would make to the college and the students, because of which, we had no problems getting into the college. She would often share her experiences of disability with groups of students which heightened their awareness of disability issues.
Old and new friends came into her life and she was invited to take part in various social events. The more she went into lectures the more she was involved. Over the years she built up her relationships and her friends would often sit talking with her and watched and waited for a response. To quote one of the students he said “Although she is unable to voice her opinions in words, her eyes express much about her thoughts”.
Carole, Tom & I decided that Claire might like someone younger to support her, as a younger person would be more able to communicate with the young people around her and so for two days a week Claire was supported by Sarah who was chaplain in the college. She brought different people and different experiences into her life and we think she helped Claire with her communication by encouraging the students to talk to her and this was invaluable. Claire also employed one of the students to support her on Saturdays to go shopping. For her birthday her friends took her to the pub at lunchtime with some friends from college. They were always trying new drinks to encourage her to drink.
It was on June 18th 2001 that Claire received Direct Payments from Stockport LA: the first in Stockport to go onto the scheme which allowed her to employ her own assistants, she could pick whom she wanted to be with and where she wanted to go.
It took us a long time to learn how Claire communicates. Carole and I went to many conferences and studies about communication. But it was through Claire that we learnt anything, she communicated with her eyes and facial expressions. Like us all she could sometimes become frustrated at her inability to make herself understood, this she did by making prolonged eye contact with the person she was trying to communicate with and if the person was someone she didn’t want to be with or was making her do something she didn’t want to do, she would turn her head away from that person or close her eyes. She also got very bored at times when at home; she verbalised by moaning and showed lack of interest by closing her eyes. She, like we all do, needed her friends around her and, with over a thousand students in the college there were plenty of opportunities for her to socialise. She loved the hectic life of being a student at college.
I realise there is little humour in this story and yet there was a great amount of laughter is our lives. We laughed together with Claire and with our wonderful friends that we wouldn’t have met had it not been for her.
If someone had told me when Claire was first diagnosed that I would have laughed with Claire, I would have thought they were mad, but she had a tremendous sense of humour, that most people who took the trouble to get to know her recognised. Both Tom and I were asked some time ago, if we could wave a magic wand and Claire would be non-disabled, would we want that? It was hard for us to answer honestly at the time but when we were on our own we realised that if a miracle had happened, that person would not have been our Claire and life without Claire would be inconceivable. Claire had a charismatic enchantment that bewitched everybody.
She had her own small flat in our house and was supported by Carole and friends who were at Uni. We also advertised at Manchester Uni and had two Chinese students who came at weekends. She had such a varied life with Rebecca who was taking a gap year and who also knew her from Primary right through till 6th Form. Rebecca made a lot of changes to her life not only in the things she did but in her appearance. She now had streaks in her hair and earrings. It was lovely to hear Rebecca and Claire laughing together; she allowed Claire to choose where she wanted to go. Rebecca took Claire to Bolton College where Claire gained 100 credits towards her degree. She used Claire’s own experiences and interviews with other disabled people to do her studies. She had two work experiences; one was portrait modelling and the other was a session with a group of student teachers. Both, we were told were very successful, but this was only made possible because of her attending mainstream education. She was able to show to both the students that the disabled person, although different, is not frightening, and they are able to contribute to society.
Everything good was happening to her but that niggling thought was always there, what was going to happen to her? I remembered the man who told me about independent living and I wondered if this really could happen to her, so Carole, Tom & I approached the local authority to see if it was possible. We were told that we would have to wait for a flat or place for her to live independently and there was a huge waiting list – some people had been waiting years. We decided that we would have to sell our lovely home, where we had been so happy and try to find somewhere we could all live independently. The authority said we would have to find somewhere first and then they would tell us if we could have 24 hour support for Claire. So with the help of one of our sons we were lucky enough to find two bungalows in the same, small Close, and so waited to hear if we had got 24 hour support. When the phone eventually rang and we were told yes, both Carole and I cried and when we looked at Claire she was also crying with us.
It was on October 21st 2003, Tom’s 70th birthday, that we moved Claire who was now 22 years old, into her own home. This allowed Tom & me to have a life other than with Claire; to visit our family in Ireland which was not always possible with Claire’s disabilities, to enjoy being with each other again and although she was very much part of our lives, we could relax on our own, knowing she was also enjoying life as most adults of her age would be, away from us and with people more her age.
We were not long in our new homes when we had the news that Carole was to move to Spain and we were all devastated. We then had to look for someone who could take charge of the staffing and the home. Not an easy task for anyone but especially as she also had to get to know Claire.
We were so lucky that we found Jill; not only was she a nurse but she had worked in a Primary school as a support worker. I thought I would never find anyone who could replace Carole, but as soon as Claire and I met her we both knew she would be great for the job. She looked beyond the disability and saw Claire’s ability. She also had 3 male support workers on her staff as well as women and young people from College and I think Claire had a great time with them all.
Of course the inevitable happened and as Claire grew older, so did our fears of what would happen to her if anything happened to us. And it did happen, in September 2010, Tom had a stroke which left him with left sided weakness and very little he could do. It was difficult for me but more so for Claire as her Dad was so different, no teasing, no laughing, I know she missed that side of her Dad as I did.
After 3 months in hospital he came home – gosh, what a difference to our lives. When he was in hospital, although I could see he was not able to do anything for himself and was only able to stand and transfer to a chair which he found difficult, I didn’t realise how hard it would be at home; I had to push him around in a wheelchair and do everything for him. Direct Payments, thank God, eventually came through, and I was able to employ his own assistants, and am happy to say that Jill was able to join the team as team leader. Without her constant help and support I don’t know what we would have done. Sadly later Tom was diagnosed with vascular dementia.
As Claire got older her health deteriorated and she was often very ill, her seizures became worse and she had pneumonia a few times, which meant she had to go into hospital, but her friends were always there to support and comfort her. I found it so painful to see Claire suffering and not able to be comforted by Tom, not to be able to talk with him, or sit next to me in the hospital and when he did he was not able to get near enough to Claire to hold her. I just wanted him to be able to put his arms around me.
Unfortunately Claire died on August 8th 2011 with her friends and family around her. Her funeral was attended by a lot of her friends from school. One of her friends made a remembrance book and even 5 years later her friends still remember her birthday and anniversary.
We had tried with the help of her very devoted friends to make her life as varied and fulfilled as possible; I think her friends would agree we were highly successful. Her quiet acceptance of those around her and her winning smile brought a warmth to those who experienced it. She was a pioneer of inclusion.
Unable to utter a word she reached a state of perfect peace and freedom and she had a great circle of admirers.
I will always remember that Claire was the one who taught me how to improve by showing me that disabled people have so much to give.
She gave me the opportunity to learn and understand by being patient with me.
She gave me determination and confidence by having to fight for her inclusion.
She gave me hope and courage because of the way she coped with her many difficulties.
She showed me how it should be by enjoying being amongst friends who were always there for her
This is an extract from Claire’s remembrance book written by Jonathan Quinn:
It is difficult to put into words how sorely you will be missed. I can only say how thankful we all are to have been part of your life, and you a part of ours. Personally growing up with you at St.Simon’s has helped shape the person I am today and thanks to your wonderful smiles I have many fond memories…….
Rebecca also wrote in her remembrance book:
The memories come flooding back in photo montage blurring the years. From when you sported those Batman wheels and we’d all chase around the playground fighting for the chance to push you – jumping to the memory of you as a stunning young woman and beautiful friend.
You gave me so much as a friend Claire, you taught me how to speak up and talk to anyone, you taught me how to have a voice because you didn’t have one that could be heard through speech, but your voice was strong.
I remember the times when you embarrassed me, falling asleep when we were supposed to be working! Snoring in lectures, and beaming with that beautiful smile of yours sometimes highly inappropriately. We laughed and I gave you enough trouble back, taking you for your ears to be pierced, putting you through highlighted hair and forcing you to read Harry Potter. I remember when we went on holiday to Horwich and me and Becky T were carrying you up the stairs – you were laughing yourself silly as we put you to bed and remember when I gave you bucks fizz and for the first time you downed it, you cracked me up with your beery face, it must have gone straight to your head. You gave me so many opportunities to experience things I would never have been able to if it wasn’t for you. When I started working for you I was terrified, so many shared moments of chatter and silence creating our wonderful relationship.
I’ll never forget you always gravitating towards gaudy cakes or what a flirt you were. These memories are just a snippet, a stream of conscience, there are so many more that will flood through and I will keep with me – to keep you with me. You are one of my best friends, we shared experiences that I will never replace, and I will always be grateful that you came into my life at such an early stage. I got to do the most exciting things and have experience-led education with and through you.
Look over us and keep that smile shining to give us the strength you always did.
Lots of love and thank you. Rebecca
There is so much I’d like to say but can’t find the words, Thank you for the memories and teaching me so much. I feel so blessed to have known you and shared in your life…….
Have I given the impression that Inclusive life with Claire was easy? I hope not. Jill, Rebecca, Carole and all her staff will tell you it was damned hard work but worth every effort. We were always looking at ways we could include her in everyday life – she had a job at Sainsbury’s looking after the children’s crèche or greeting people, giving out leaflets. Unfortunately she made it quite obvious she did not like the job, she would close her eyes throughout her few hours there. Eventually we had to admit defeat and admit this job was not for her and sadly I had to hand in my discount card.
Inclusion is about being part of a circle of friends.
Inclusion is about being missed when you’re not there.
Inclusions is about being human and being in a relationship with one another.
“We need to welcome difference.
Difference teaches us about each other and ourselves.
We need to empower all members of our community.
We need to celebrate difference in dignified ways.
We need you not to allow your fear of people spoil the opportunities they offer and the gifts they bring.
We need you to recognise that we are all on a journey, travelling towards a point in the future where we are all of equal value.
We need each other to change the world”