Children with missing or paralysed limbs want space to make their own lives. Karen Gold reports
The artificial arm expert was confused. One of his patients, a 13-year-old girl, was waiting in his clinic for the third time in three months complaining that her prosthetic hand had snapped. At last, says Sue Banton, director of the limb deficiency charity Steps, he got the story out of her:
"During her daily train journey to school, egged on by friends, she had been leaving her hand in the train door while it shut, so she could terrify the people in the carriage. It was a huge joke."
Such a robust attitude is not rare. Children have been known to paint their prostheses bright blue, to take them off and wave them, even to use them as a weapon. (However, self-consciousness may overtake defiant ostentation as adolescence approaches, says Banton. "If a child has a history of coping well with a prosthesis, and suddenly they don't, it can take everybody by surprise.") This is less common among children who are not born disabled, particularly those whose spinal injury or limb loss occurs beyond the toddler stage.
They can remember what able-bodied life was like, and so can their families.
"If a child becomes paralysed it's a bereavement for the family," says Marja Van Dijk, a therapist for the mobility charity Whizz-Kidz. Guilt, anger or depression may surface and resurface in the child and family for years, and may be expressed in resentment at teachers or schools, which are part of a powerful official system that can nevertheless never restore life to the way it was.
Ali Taylor, youth project co-ordinator of spinal injury charity The Back-Up Trust says: "An acquired injury is a massively traumatic experience. Going from being able bodied to being in a wheelchair is so different from a disability you've had all your life."
Every family and every child will deal with that trauma differently, adds Karen O'Donnell, ward sister on the children's unit at the National Spinal Injury Centre at Stoke Mandeville Hospital.
"The time it takes to adjust depends on the child. Very young children are angry and frustrated that they can't get up and run around. They throw themselves out of the chair and crawl on the floor. Possibly they then adjust faster than older ones, but it's hard to generalise."
SPINAL CORD INJURY
The spinal cord is the communication system between brain and body: a thick bundle of nerve fibres packed inside the spinal column, through which messages pass between the brain and the body's muscles, skin, internal organs and glands.
When the cord is damaged, this communication system is interrupted.
Messages cannot cross the break and the brain cannot communicate with any part of the body below it.
The higher the spinal lesion, the more severe the body's paralysis. If the break is in the chest region (known as thoracic or T), the child will be paraplegic: unable to control the legs, lower body, stomach, bladder and bowels. In the neck region (cervical or C), a break causes tetraplegia or quadriplegia, and, depending how high it is, will partially or fully paralyse the arms and breathing system.
Spinal damage is most commonly caused by accidents, but viruses, cysts and tumours may lead to progressive paralysis. Probably several hundred children suffer spinal injuries annually, although no numbers are officially recorded.
Healing and rehabilitation generally take six months to a year, during which time the child will be out of school. Subsequently, the child may suffer pain and be permanently at risk of pressure sores.
Following paralysis after a riding accident, Superman actor Christopher Reeve spearheaded a drive for research directed at a cure for spinal injury. He died without seeing it. There is no miracle around the corner.
About 100 babies are born each year with one or more limbs having failed to develop fully in the womb. This is called congenital limb deficiency.
Subsequently, children lose limbs as a result of accident or illness, in particular, amputation after meningoccocal septicaemia.
Just as the impact of spinal injury varies depending on where the break is, so the impact of limb deficiency will depend on how many limbs a child has and how developed they are.
With help from occupational therapy and prosthetics, children with one shortened leg or arm may look and function almost indistinguishably from their peers. However, artificial limbs do need protection from sand and water, and they may chafe.
A child with no hands may also keep up completely with their peers, but with more noticeable difficulty and difference: for example, by writing or eating with their feet.
That difference can create challenges for the child, their class and the school. Planning for school entry is vital, say experts. Ideally, a child's first form teacher should visit the child at home, where all the things he or she can do will be more obvious than in the unfamiliar surroundings of school.
The teacher and Senco should also meet the parents and child to discuss any help the child may need, and how the child wants his or her disability discussed and treated at school.
Children refer to their prosthesis or shortened limb in different ways, says Frank Letch. He is a former modern languages teacher who has no right arm, a shortened left arm and no hands, and who gives talks to schools on behalf of the upper limb deficiency charity Reach. Some talk about their "little arm" others about their "bionic arm".
Other children in the school need to know the phrase to use; they also need to be prepared to see something different in a child without reacting with cruelty or fear. "Children will always ask you how you wipe your bum," says Letch. "A child in Ireland recently asked how I cleaned my ears out. These are big issues for kids. If they ask the question, then they need an answer."
Reach publishes a storybook, Ben's Spider, for use with young classmates of a child with upper limb deficiency. (See resources.) Staff need to remember to prepare new children who enter the school after the disabled child, says Reach: there are cases of a newly arrived child taking fright at a child's missing arm long after the start of the school year when everything seems to be going smoothly.
KEEPING UP FRIENDSHIPS
Once the missing or artificial limb becomes accepted in the classroom, there are few social issues for a limb-deficient child apart from needing some - but not over-enthusiastic - help with certain toys. Unscrewing is particularly difficult; cutting up food or dressing can be, too.
For the child whose injury occurs after starting school, the social issues are greater. He or she may be away from school for a year; long enough for friendships to wither. Visits, cards, tape-recordings and videos, both to and from the child in hospital, perhaps of special assemblies and events, can all help the child through this shocking and isolating period.
Children undergoing repeated leg-lengthening surgery will also experience periods away from school, says Sue Banton of Steps.
Research at Liverpool University has shown that peer support determines how well children cope psychologically with this. "It's very important that the whole school, friends and particularly the best friend, are involved in supporting the child and visit while the child is in hospital, so they understand the process," she says.
For these children, but more for the spine-injured child, support will be needed on return to school in rebuilding friendships, ensuring playground integration in primary school and peer group acceptance at secondary school.
Obstacles to an ordinary social life for spine-injured children are great: access to the park, the cinema and other children's homes may all be difficult. Fear of a further accident or occasional toileting issues may scare other children's parents.
A paralysed child will not come back to school the person they were when they left, and staff may need to support everyone in understanding that.
Most of these children will be driven by two desires: to be independent and to be the same as everyone else. Some will be more confident than others; some will also have more confident parents than others, says Frank Letch of Reach.
"There's nothing worse than the teacher coming up and saying, 'Can you climb these ropes?' The teacher needs to sit down and find out beforehand.
On the other hand, if the parents are very protective, staff may need to let the child do things the parents say they can't do."
Making PE lessons inclusive is crucial: the charity Youth Sport Trust has produced ideas and guidelines in a pilot programme called TOP Sportability.
It enables one student in a wheelchair to join in with 29 others playing football by using wheelchair-only zones or by having a circuit of skills rather than the traditional game.
PE teachers can help everyone participate if they have a flexible approach to the space, the task, the equipment and the people playing, and if they look beyond traditional sports to newer ones, such as the bowls-like game, boccia, says Mark Botterill, the charity's inclusion officer.
Even so, says Frank Letch, patience may be required. "It's important to allow the child to do things their own way, even if it's slow or clumsy. If there's a rota for collecting the register, the child must be allowed to collect it, however slowly, just like everyone else."
School trips are particularly hard for these students, says Karen O'Donnell at Stoke Mandeville. Organisations such as The Back-Up Trust and the Douglas Bader Foundation offer outdoor activity courses and support for adventurous sport aimed at spine-injured and limb-deficient children respectively. But that does not replace the experience of school trips - from which they are often excluded unless accompanied by a parent - isolating them from their peers.
The biggest issue of all, says O'Donnell, is personal care. Spinal cord injury affects the autonomic nervous system, which controls the body's involuntary functions, in particular bowel and bladder control as well as male (but not female) sexual function. (The Spinal Injuries Association produces a booklet called Sex Matters, which costs pound;10.) Every child, sooner or later, will have an accidental urine spillage or bowel movement, she says. This means that, while they do not necessarily need a disabled toilet (although limb deficient children may), they do need a safe, private space with a bed, on which they can be changed or helped to change.
However, child protection rules make this hard for small primary schools.
Not all can spare two adults simultaneously to help a child, which is the minimum some authorities now recommend, so that parents are sometimes summoned before a child can be changed.
O'Donnell also says it is her experience that young children are much more likely to be comforted and helped than older ones. "Secondary schools do need to spell this out to their support assistants. Some assistants seem to think they are there to carry the child's bags or help them around the school, but they don't expect to do anything else. The child needs this to be managed with dignity, not made to feel dirty.
"I can't imagine anything worse than a teenager waiting two hours in a school corridor for someone to help them change, with everyone going past looking at them. But I have had more than one child tell me that's happened to them."
* The Spinal Injuries Association is at www.spinal.co.uk; its helpline is 0800 980 0501