Jack’s story: Personal experiences of a family with a severely disabled child

Introduction

So. How did it happen? There we were in the mid-1980s, Heather enjoying being back teaching after six years off following the births of our two children who were now settled and happy in primary school. Meanwhile, I had recently taken up a post as a high school head teacher, a demanding but equally fulfilling job. Perhaps it was simply that we didn’t want those magical early years to be gone forever or wanted to extend the family life we were enjoying so much. Whatever the rationale, it happened …

Jack, our third child was born in January 1986. After several unsuccessful attempts by the midwife to get him to breath, he was rushed to the paediatric special care unit. We heard nothing and saw no one for three long hours, the longest three hours of our lives. Eventually the paediatric consultant arrived holding a photograph of Jack (was that because he had died?) and sat on the end of the bed. He told us that our newborn was alive but had not breathed for more than 20 minutes. He had suffered seizures and a lung haemorrhage but was stable and being ventilated. We were taken down to see him in special care.

We were told that there was a possibility of brain damage, but it would be a matter of waiting to see how he developed to identify exactly how severe any impact on his development would be. The paediatrician was ‘cautiously optimistic’ about Jack’s prospects. There was little advice about potential feeding difficulties, yet this became a major time-consuming and stressful issue, especially in those early years. In reality, Jack’s condition – cerebral palsy expressed as quadriplegic spasticity with features of athetosis – rendered it unlikely that he would ever walk, talk, sit unaided or feed himself. Our lives would never be the same again. So, what were the options?

The early options

Jack's birth occurred at a time of major changes in health and social services. Community care and social inclusion were the buzzwords, and the shift was manifest across the board: in mental health, youth justice and special education. Twenty years previously, the likely plan for Jack would have been a long-stay ‘total’ institution, probably a ‘sub-normality’ hospital where he would have remained until he died and been buried there. But a de-institutionalisation movement had taken hold worldwide, reinforced by research that highlighted the risks of institutionalisation, emotional impairment and isolation from families as well as revealing some shocking living conditions and abusive practices. Although these findings led to improvements in a great deal of residential care, facilities of the kind that would have sheltered Jack were being run down.

Parallel to these reforms were political moves to increase the rights of disabled children and perceive them as active citizens who happen to have a disability. This thinking was subsequently reflected in the Children Act 1989, which incorporated it into the general category of ‘children in need’, so making the children eligible for the full panoply of therapeutic interventions.

The plan, therefore, was for Jack to live in his family with a massive package of medical, educational and social support; once he was off the ventilator and feeding, we were allowed to take him home just two weeks from the day he was born.

The first few years

Despite the optimism in the initial discussions, the extent of Jack’s disability was only revealed as a slow and painful process through a lack of development over the first three years. During this time, we would take a sly glance at every disabled child we encountered, making observations such as, ‘Well, that little one can hold a bottle’ or ‘She can sit unaided!’, thinking, ‘That wouldn’t be so bad would it?’ We were looking for some small hope but after three long years the reality of Jack’s severe condition was fully apparent. The constant crying (24 hours non-stop was not unusual), problems with feeding and broken nights took a heavy mental and physical toll on his mother and family life. The other two children still had to be taken to school, fed and tended to. I was away at work all day and yet Jack still demanded 24-hour support, with little visible reward of progress and development. The failure of that first smile to emerge at three months, no hand reaching out for the breast, none of those wonderful landmarks which accompany a baby’s development, none of these rewards arrived to enrich the constant attention required for his round-the-clock care. In that first year, Heather shrank from a healthy nine-stone PE teacher by a full two stone.

What helped us cope and survive? We were lucky to have close family nearby, especially my mother-in-law. Her regular visits were invaluable as an inveterate washer, ironer and cleaner, but neither she nor anyone else could manage the direct feeding and caring that Jack needed. Similarly, despite all the moral support from friends, no one could replicate the skills required to sustain him.

The greatest direct help came from the Child Development Centre (CDC) based at the local hospital where Jack had been born. It was here that health, education and social services support was brought together to try to provide integrated and easily accessible assistance. For the first six months of Jack’s life, the physiotherapist from the CDC made weekly home visits to coach us in physiotherapy exercises, which it was hoped would aid Jack’s development. At least this made us feel we could do something productive, however limited the impact the exercises had on his progress.

Every two weeks, Jack would see the paediatrician who had been at his birth to check his physical well-being and development. Again, he was based next to the CDC, which gave us the sense that the support for both us and Jack was integrated.

At six months, the services from the CDC were provided at a single location, on site in the hospital grounds: physiotherapist, occupational therapist, teacher and nursery nurse plus regular inputs from a social worker to check whether wider physical or material help was required.

Every Monday, Heather would take Jack along to the CDC for a 90-minute session. Four or five mothers of disabled children would attend the class with their youngsters while the physiotherapist took them through exercises and demonstrated toys or equipment that could help their child’s development. It was not only the professional help which was invaluable but also the social mixing with others who were facing the same physical, emotional and psychological challenges. Some of these relationships would grow and develop into the cornerstones and bedrock of both Heather and Jack’s future well-being.

The ‘Handicapped Mums’ Group’ started after two of the mothers decided to meet for a coffee after attending the CDC. Due to these meetings, the physiotherapist soon became aware of the social cementing that was taking place. Bonds were created between mothers with mutual needs that were to last a lifetime. They found the informal coffee meeting so helpful, so rewarding that it was repeated after the next CDC session and another mother joined them. The meetings grew and transferred from coffee bar to evenings at a pub as even more mothers joined them for a ‘drink’. The CDC social worker recognised the significant support this was providing and the benefits emerging. She referred other mothers to join them. This was exactly how Heather was ‘recruited’. It was through an unofficial expansion of the role of physiotherapist and social worker, who both personally and professionally identified the power and potential of such a bonding of mutual need. Word spread, more mothers were drawn in and a CDC nurse volunteered to offer advice. As the group grew, the informal pub meetings morphed into monthly evening meets in one another’s homes.

This Mums’ Group is now more than 30 years old. Active membership has naturally changed with circumstance. Activity has expanded to include some weekends away, and residentials in country cottages and seaside caravans. They all fulfill the same essential need: companionship, information-sharing, support, humour, counselling, weeping and laughter at their own failures and inadequacies. It was essentially a bonding of common interest aided by a glass of wine and the freedom to share tears and triumphs. The group gave Heather more moral and emotional support, more relevant information and more therapy than any of the formal and official sources, however well-intentioned and valuable they might have been.

Respite care

To be able to cope, to recharge batteries and to give our other siblings some prime time, any form of respite from Jack was both golden and life saving for the family and especially Heather. In the early days, respite would largely consist of Grandma taking Jack for long walks around the neighborhood, giving a few precious hours of either ‘me’ time or unbroken attention to Jack’s brother and sister. We were also fortunate to enjoy a close network of friends. On joint family holidays, Jack would be taken out for trips by our friends and their children would take delight in competing to get a smile out of him. On beach holidays, he would be taken off for beach walks so we could play uninterrupted with the other children or simply relax in peace.

Jack was two years old before any formal respite care programme was developed. Again, it was the dedicated social worker who organised a voluntary shared care respite programme. As a trial run, Jack went to spend a day with a volunteer family – a wonderful altruistic gesture on their behalf. Sadly, however welcome the offer, Jack was clearly unimpressed with the arrangement and true to form, showed his hosts just how unsettled he was each time he visited them over the ensuing months. They struggled to cope. Clearly a bridge too far.

Shortly afterwards and building on this, a close family friend offered to look after Jack for a weekend (both she and her husband had full-time jobs) so that we could take our other two children off for a couple of days by the sea, where we could do exactly what they wanted. No Jack to consider. Wonderful freedom.

These breaks, however brief they were, planted a seed. As parents we needed the rest, both physically and mentally, and the children deserved some time for themselves. Some of this respite was provided by a local charity that ran a nursery for disabled young people. It was professionally staffed but supported to provide one-to-one support by a wonderful army of retired volunteers. Social services supplied some essential core funding.

More respite arrived naturally once Jack was old enough to start special school. It was through this that he went to school camp for a whole week – real respite for us but once again tempered by the knowledge that Jack had barely slept for the whole time. There was also an exemplary national charity that organised PHAB (physically handicapped and able bodied) holiday camps, staffed by altruistic students giving up a week’s holiday and providing individual support. But once again, however stimulating the activities, reports hinted that Jack had barely slept all week.

Our consciences and the knowledge that Jack had not really enjoyed or appreciated these interludes delayed our decision to access the more formal respite services available courtesy of and funded by social services. By the time Jack was 12 we took the plunge and started sending him for nights away at the local respite centre on a more regular basis. This was not only (we convinced ourselves) to maintain our health and sanity as a family but was also, we knew, essential for Jack to tolerate more independence from us for later in life, when we would not be able physically to provide the same level of care that we were currently able to give. Now, years later, we learn that Central government cuts to local government social service providers have drastically reduced the amount of respite care available for eligible families and that the impact on them has been significant.

Education

Choice of school was another key area of significance and need for support. Normally, families have a fairly clear idea of their needs and preferences, informed not only online but also by friends and local networks. Disabled provision presents more of a problem. What is actually available? There is such a wide range of disabilities and provision designed to meet specific disability needs that finding the most suitable placement for Jack was yet another challenge. Happily, support and advice were available, not just from social workers and the Mums’ Group but once the nearest appropriate special school had been identified, from a member of staff who came to the CDC to brief families. This seemed the number one, if only, option and we confidently enrolled Jack, pleased that transport was also on offer.

Our concerns over this placement grew as our knowledge of its organisation and ethos increased. There were support services available at the school – physiotherapy, nurse and occupational therapy – but each role, though linked, seemed to operate independently throughout the school and certainly within the classroom. Responsibility boundaries were quite jealously guarded in some instances. Opportunities to integrate and complement input to mutual benefit were rarely taken. It soon became apparent that Jack was more severely disabled than the rest of his class which had been allocated by age rather than by ability or need.

We decided to research whether there was anywhere more suitable. Once again, using networks and especially the invaluable intelligence from the Mums’ Group, we decided on a school on the other side of the city. The difference in both organisation and culture was clear. Importantly, the teaching groups were structured by need rather than by chronological age. Inside the classroom, educational, medical or social roles were not immediately distinguishable from one another; they were completely integrated with the contribution each could make to Jack’s development shared and complemented. This culture not only affected Jack’s development but also inspired a positive climate in which being at school was an enjoyable experience.

As for practical considerations, Jack had transport to and from school provided and the journey, though long, was often a pleasurable part of his day. If you are immobile, being on a journey, albeit the same one each time, is made more enjoyable by having the same driver and bus guide; this was an important and relatively entertaining experience for Jack and a key part of his daily routine. These two people, despite being on a part-time barely minimum wage, clearly loved their jobs. They got a great deal of pleasure from their contribution to these young lives and those of their families. Both driver and guide would sport fancy dress for festivals such as Christmas and buy Easter eggs in spring, such was their commitment to their role and the fulfilment they derived from it.

Jack was as well settled as he could be at school and we, his parents and especially his mother, had a significant part of our lives back, so much so that Heather felt able to go back to work part time – to re-establish her identity as a teacher and not simply a mother of a disabled child. She was able to regain some professional satisfaction together with the stimulus of working with other adults on the staff and supporting students to improve their skills.

School, home and family life was starting to return to as close to normality as we could hope for … that is until the next watershed was reached: statutory school leaving age. As Jack reached the age of 16 and his review took place at school, a social worker should have attended to advise and plan for his continuing education and future needs post-16. No social worker came. This left everyone in the dark about what appropriate provision was possible and available. The school had some knowledge regarding where former pupils had gone, but there was no formal map or overview of what might be appropriate and available. We resorted to the telephone directory section on adult day centres. Where were they situated and how could it be funded now that the education budget no longer had to pick up the tab? There were specialist residential colleges but how would Jack cope in a residential placement? We simply could not see him surviving.

The search began for care provision within striking distance from home. This was deeply depressing. The day centres and other places we visited were often quite unprepossessing. No longer were there qualified professionals organising appropriate activities and stimulation. Often the users were much older than Jack and certainly the facilities and regime were not appropriate to a late developing teenager, belatedly reaching puberty. We were beginning to lose hope until Jack’s school suggested a day centre that former students were attending and which they thought would be suitable for him. The dominant question, however, was not suitability but funding from a social service with a rapidly diminishing budget. We obtained an agreement in the end, with costs shared between health and education, but we did ponder that if we, as fairly articulate and capable parents, had had to battle to obtain this, then just how likely would it be for less advantaged families to manage. We were pleased with our choice. The centre had a full-time physiotherapist and two nurses. They provided a relatively stimulating range of activities including swimming sessions, community visits, cookery and small group activity. Although there were no longer qualified teachers, staff were well trained and appeared to promote a positive, active and caring ethos. We were delighted that this would be a placement both appropriate for Jack and one where he was most likely to be happy.

Social services

The most coherent support we received from social services came in those all-important early years, as previously mentioned. As part of an integrated support service at the CDC, it was the dedicated social worker who was an invaluable source of help and advice. She was the one who opened up the channels to enable us to acquire essential adapted equipment, such as a wheelchair and washing and toileting equipment. And it was this social worker who went above and beyond to try to establish the shared care scheme.

Subsequent to these early years, support from social services tended to be intermittent and in response to requests rather than a structured input. For example, it was through the Mums’ Group that we learned of the entitlement for bathroom adaption. Also, as Jack grew larger the physical difficulties of toileting and washing were taking a heavier toll on our backs. Constant lifting and holding have had both a short- and long-term impact on both of our bodies. Once we had raised the issue with social services, the response was immediate. An occupational therapist was dispatched to assess our current bathroom facilities and recommendations were taken up by social services, who commissioned a specialist company to transform our bathroom into a wet room with a walk-in shower – perfect for all our needs.

Physically, Jack was a late developer (as a side effect of his cerebral palsy) but as he reached adolescence it was quite clear that our three-storey Victorian house was not suitable for caring for a teenage disabled child and the ever-increasing size of his wheelchair. We considered moving but there was nowhere local that did not need substantial work to adapt for a young man in a large wheelchair and there was no desire to go far as Jack’s brother and sister were both well established at school. We also had a strong support network of family and friends. The advantages of moving barely outweighed the problems and benefits of adapting our current home. Obstacles included front doorsteps, stairs to bedroom and access to the back garden. We were advised that funding was available but to a style and standard incompatible with our Victorian house. In the end, we were able to draw on savings to re-lay the garden paths and fit a lift from the dining room to Jack’s bedroom in a way that addressed the problem and caused a minimum of disruption to style and fabric.

As Jack grew older, contact with social services became more sporadic. It would have been really useful at those important points of transition from nursery to school, between phases of schooling and at transition to adult care to have a clear roadmap of educational pathways. As it was, these moves were very much a ‘do it yourself’ process. Post-16, we were entitled to an annual review of Jack’s progress and needs. On occasions, a social worker simply failed to attend and turnover of staff meant that when a new one did come, most of the meeting was taken up by a recap of Jack’s history rather than us seeking advice and information on pathways ahead.

By far the biggest contribution to both Jack’s and our welfare was the social service funding for respite care. Funding in those early years gave us an entitlement of 100 nights of respite a year. Though we never used the full entitlement, the ability to have a full night’s sleep and to give full attention to Jack’s brother and sister was crucial to the family’s health and well-being. The bespoke respite centre run by the local charity provided a first-class care service with equipment and an environment ideal for Jack’s needs. It is, however, sad to report that cuts to social services budgets and the impact of privatisation have meant that current entitlement locally is now much reduced and the local charity running our respite centre has had to file for bankruptcy. Future provision of this kind will have to come from independent care providers that cannot afford to provide the things that helped Jack so much, such as a sensory room, a garden with adapted play equipment, a specialist jacuzzi and transport for stimulating trips and visits. These were the facilities which also made us confident and feel less guilty when Jack had gone away for a care home stay. At the time of writing, friends are being offered 14 nights a year respite and face intolerable pressure. What other job requires 24-hour commitment for seven days a week with only one day off a month?

Health

Jack’s medical needs were significant throughout his life and became more complex and demanding with age. The support that we, as parents, received and his treatment were exemplary right through from the paediatric consultant who treated him at birth and supported his early years, to the neurologist and neurosurgeon who tended to him as he developed and his medical needs increased. Around them were medical teams who mirrored their concerns and commitment.

Following Jack’s birth, his paediatric consultant not only ascertained that his medical needs were met but also made sure that all relevant medical specialisms and support remained co-ordinated and were always available when needed. Such was the relationship that when we bumped into him on holiday with Jack on the steps of Nantes cathedral and again in a Cotswold bar, it was as if we were bumping into an old and valued friend of the family. His chairmanship of the charity trust running the local respite centre exemplified his commitment to his patients and their families.

As Jack grew older his medical condition deteriorated. Remedies became more profound and his needs grew more complex. His spasming was heartbreaking to witness. As a result, feeding was becoming more and more of a problem. Possibilities of medical intervention were presented to us, as were the associated risks. In the end, we had to weigh up the pros and cons and take decisions on Jack’s behalf, as we did throughout his life.

By the time Jack was in his mid-teens his spasticity was causing increasing difficulties leading to more and more physical discomfort. His paediatrician referred us to a paediatric neurosurgeon who felt that the drug baclofen delivered internally would greatly alleviate his constant spasming. This required a baclofen pump to be installed under the flesh of his stomach with a direct feed via the spinal column into the brain – a relatively new procedure in the UK. The operation was completed and the relief was immediately apparent. In those early years it was of great benefit to Jack. Sadly, after three years the catheter providing the internal feed to the brain ruptured and required immediate surgery to repair. Jack was rushed to hospital but as he was being prepared for the operating theatre it transpired that the anaesthetist refused to proceed as he did not have the expertise or equipment to operate on someone as small as Jack. There followed 24 frantic hours of negotiation between the children’s hospital and the general hospital as to who would pay for the surgery. Technically as an adult, Jack’s health funding would not transfer to children’s services. This kind of argument was not an unusual issue for us. The catheter was repaired but the trauma of the 24-hour back and forth over funding was one more unnecessary stress on us all.

Impact on family life

Jack was inevitably the centre, the focal point of family life. Any family activity, any treat, any holiday or any outing under consideration was prefaced by two questions. Will Jack be able to access or take part in some way? Will he tolerate and/or enjoy it? Any public outing required these criteria to be met. Due to lack of speech, the only way Jack could express himself was positively with a smile or negatively with a scream come shout come moan. He could ruin any public outing in a matter of minutes. Hence a meal out was both a treat and a test. We did come up with a few effective remedies. With his favourite gadget, a tape player, tucked beneath his wheelchair several cafés were treated to a rendition of George’s Marvellous Medicine emanating from this mysterious source. Similarly, the theatre or any public event could be ruined in a matter of seconds by Jack venting his disapproval. Thinking of a birthday treat was quite a challenge to our creativity until we hit on the idea of hiring Pog the magician to perform his magic at special school where skilled staff could manage the situation, no one would be embarrassed and Jack would delight in giving his class a treat. In view of all these constraints, access to respite care was invaluable in that it gave us the opportunity to enjoy a family outing with our other children without the threat of failing to meet Jack’s tolerance or approval.

Jack (usually) loved visits to the countryside, stimulated by constant movement but these were inevitably restricted to lane walks with no ambitious challenges of ‘who can be the first to the top of that big hill?’. The physical limits to outings increased as Jack grew and the size of his wheelchair became larger and less manageable. Family activities such as cycling were out of the question. Watching Jack’s brother play football meant taking it in turns to spectate while the other one of us did non-stop circuits of the pitch to keep Jack quiet.

I don’t want to paint too bleak a picture. When Jack enjoyed something the shared pleasure and reward were immense. Bringing enjoyment to such a trapped little soul gives reward beyond belief. Our other two children have become more tolerant, more understanding, more balanced and more unselfish individuals from growing up in a family where everyone understood and accepted that their needs came second to Jack. They also learned the joy of making their brother happy and the work and effort we made to support Jack. Fortunately, they were old enough when he was born to appreciate that his needs came first.

The generosity and goodwill extended to our friends. Barely a day passed without someone asking whether they could do anything to help. In the Cornish fishing village which was our favourite holiday destination we were not ‘Tim and Heather’ but ‘Jack’s Mum and Dad’. The cook in the village pub would want to know when we were coming for a meal ‘so that I can cook Jack’s favourite fish pie’. It felt akin to being royalty. Joint family holidays with our friends inevitably resulted in the other children competing to entertain Jack, to take him for a walk or read him one of his favourite stories. On visits to a South Wales caravan site, trips to the magnificent but secluded beach were only possible courtesy of a posse of rugby team-mates shouldering Jack in his wheelchair, sedan style down the 200 steps to the beach below. Once there, a bevy of friends would compete to take Jack off for a walk to give us a break.

As a family it has driven us closer together through sharing a common band, a shared need, and given us a sense of perspective on our own privileged health and freedom. For others we have known in a similar situation, the tensions have resulted in a family or marriage break-up. Setbacks all take secondary significance to concern for a little boy who can do nothing for himself. There would be no Mums’ Group without Jack. Making him smile has given us more pleasure, more fulfilment than almost any other treat that we could do for ourselves. But it has come at considerable cost.

Observations on services: some lessons learned

Postscript

Jack died when he was 25 years old. His medical problems had become increasingly profound. Our hospital visits were more frequent and more prolonged. Long spells in hospital post-surgery or treatment required us staying 24 hours a day at his bedside as the only ones sufficiently skilled to feed and care for him. This we managed by juggling work commitments to alternating 12-hour bedside shifts between us. His death still came as a shock and a heartbreaking blow. It has freed us up as a family to do things we could never have done with Jack even though he experienced many adventures lots of children have never enjoyed. Life since his death has made us realise just how much his needs dominated our lives. Reflecting on this article, we looked back through the family photo albums. We were taken aback by seeing all those holiday pictures and realising in how many of them Jack was either crying, screaming or yelling to express his disapproval or discomfort. It reminded us of the toll that 24-hour care took on our lives and just how important was the support of families and friends, and more than anything, the breaks to recuperate provided by respite care. The cuts to social service funding and the disaggregation of services leave us pondering just how we could have coped had Jack been alive today.