an article written by Lou Everard in 1983
The Wheelchair Toddler
Louise Everard describes how she and her husband coped with the news that their daughter, Ruth, would never walk, by giving her wheels.
In April 1981 my husband, Dan, and I were told our daughter, Ruth, would never walk. She was a normal-looking 17-month old baby bright and contented, but severely weak, suffering from an incurable neuro-muscular disorder.
Bright yellow machine
Power-chairs were not then commercially available for children under 3, and even then, the sort of machine Dan envisaged does not otherwise exist. Ruth's chair turned out to be an exiting, highly manoeuvrable, bright yellow machine, which Dan has described as a forward-control fork-lift truck, with the acceleration of a Lotus (up to 4 miles an hour!). It can spin the driver about her centre of gravity and raise her seat from ground-level to table-height at the touch of a button. The power of the machine enables Ruth to keep up with, or even outstrip her contemporaries in dashing about, as children that age love to do.
Most of all, we felt that Ruth should have an alternative to walking at about the same age as other children learn to walk. Twenty months is late for a child to begin walking, but by no means outside the "normal" age for mobility, and we feel this was important in many ways. Firstly, there is such an urge to move, learn and explore at that age, that the job of teaching is relatively easy. Secondly, we wanted to prevent her immobility damaging other aspects of her development.
Children who have to wait until 5 for the chance of independent movement have already established "disabled" behaviour patterns and attitudes, both in themselves and in others, which are difficult to unlearn.
In those 10 weeks of frantic creativity, Dan was reacting much as other parents do, when confronted by a handicapped child. There is a furious need to do something - anything - to make things better. Most of us find we cannot fulfil that need, and simply have to rely on the "experts" to do what little they can and to teach us to cope. Luckily, Dan was an "expert" in his own field, and had the skills and the contacts to make a real difference to Ruth's life never envisaged even by the paediatrician who had first sparked off the idea. It was a purely instinctive reaction, done with very little consultation with the professionals, and the wheelchair was designed with only Ruth in mind. But we now find so much interest and admiration expressed, that we are convinced it should be the forerunner of many more wheelchairs for children of 9 months and up.
The story starts with a placid, amenable 20-month old, who could always be relied upon to be where she was last put down, and didn't, unlike her peers, suffer temper-tantrums over things she couldn't do or have, because her access to those things was so easily preventable in the first place. She was an observer of life and not in the least frustrated by her immobility, having never known what it felt like to be able to move. She could sit up, had good control of her hands, though no strength, and, for her age, could concentrate on one toy for quite long periods of time. A charming child - I was the envy of many a harrassed mum!
Learning to "drive"
But with the wheelchair, the picture changed. After 6 weeks of tentatively pushing the buttons and joystick with much demonstration and encouragement from us, Ruth discovered that movement was not frightening, but fun. This period of learning to "drive" was similar in many ways to the time it takes for a normal child to really find his or her feet, from first discovering that independent upright motion is possible, to actually preferring it as a method of getting from A to B. Having also put 9-10 month old children in the driving seat, we know that Ruth actually started "driving" late, as, the younger the child, the less fear has to be overcome first, and the controls are simple enough that a 10-month-old baby quickly masters them. Clearly the optimum age will vary according to the abilities and disabilities of each child.
Need for discipline
Since becoming a confident driver, at 22 months, Ruth has developed in many ways I would not have expected of the "passive" child I knew. For the first time, she began to shriek at the top of her voice, while chasing her father about the room. The speed of movement, and the games she could play, like spinning round and round, chasing and hiding, all gave her that basic attribute - a sense of fun. From being generally contented, she began to really enjoy herself. From being a passive observer, she became actively involved. She learned, as she learned to control the machine, to control her environment more. She could make a decision for herself and act upon it, all at once. She could test things out, and as her access to things expanded at a stroke words like "no" and "don't touch" crept into my vocabulary. Best of all, she could run away! She could defy authority, and discipline became a problem for the first time. We were forced to teach, as all parents have to, what can and cannot be done, and how to respect other people's rights, from not running over their toes, to not touching their property. There has also been the need to learn about dangers, and how-to avoid them - again another ordinary lesson of childhood, from hot water and not touching the cooker, to road safety. The wheelchair made a difference, in that in moments of stress or danger, when a normal child could easily be picked up and physically restrained, we all soon discovered the emotional hold Ruth could exert against us immobilising her. Other mums, hearing me threaten to "turn her off" may have wished they too could flick a switch with their naughty 2-year-old! It took us a long time, however, to balance out what degree of restraint was appropriate to her behaviour, and what was undue punishment by virtue of the complete immobility we could enforce if we wished. But at least she has been able to test out the bounds of "normal" behaviour for herself, at more or less the appropriate age.
Socially, both with children and adults, the wheelchair has had an enormous impact. It is still noticeable how differently Ruth is treated by others when she is being pushed by me in a pushchair, rather than in control of her own wheels. When she is immobile, other children tend to be more standoffish, or else to "mother" her treating her like a baby or a doll. Adults speak over her head, rather than to her, in a classic "Does she take sugar?" way. But when she is in her wheelchair, other children at first are fascinated, or envious of her bright yellow car, and quickly learn how active, even dominant, it can make her. They find it fun, and she easily makes friends amongst her peers. Adults' first reaction is often sheer amazement at her apparent skill in "driving" and they give her lots of praise and attention, talking directly to her much more. The emphasis changes from "What a shame" to "isn't she clever", at a stroke!
The effect of this, on Ruth's self-image is to make her thoroughly positive about her abilities. There are still many things she cannot do, like climbing in and out of things, dressing herself, toileting without assistance ect., but it has been fascinating to watch her invent new ways to join in things like jumping, dancing, even playing football in her wheelchair. These may look inadequate substitutes from the outside, but for her it is the joining in which is important.
Educationally, the wheelchair has made it easy for Ruth to integrate into a normal nursery school at the age of 3½ after attending her local playgroup for 2 terms. This process has also been assisted by joining an Opportunity Group from the age of 18 months. Many of her friends at playgroup will be classmates when she moves on to the local primary school when she is 4. There has never been any doubt, despite her severe physical handicap, that she could compete in a normal school setting, and that, intellectually, she needs the stimulation of a mainstream school.
Of course, there are therapeutic conflicts inherent in giving such a young child a powered wheelchair so early. It can never be a case of letting her use it all the time, because physiotherapy is necessary to avoid secondary disabilities and to increase her muscle power as much as possible. In particular, the sitting position is the worst position for her, physically. She can stand supported by a frame, and the more she does this, the better. There were worries, early on, that an electric wheelchair would create a disincentive for physiotherapy which would be detrimental to her physical development. In fact, it would appear to have had little effect in this way, although it is impossible to assess precisely. Indeed , my observation has been that having the experience of independent movement has actually increased her desire to walk on her own.
On the other hand, now that she is learning what hard work it can be to walk with aids, compared with the flick of a joystick in the wheelchair, the disincentive may begin to operate, but she is mainly limited by her weakness, not her will. Because we have seen the enormous difficulty she has in using a swivel-walker, Dan has designed a "standing box" or as Ruth calls it a "driving frame" to replace the seat on her wheelchair. This combines therapy needs with fun, and removes the present conflict of interest, as well as giving Ruth even better access to things like bookshelves, light switches and cupboards.
Ruth has taught us 3 major lessons. Firstly it is possible to put such a young child into a power-chair, safely, by applying the latest technology to the problems, and it is encouraging to see the use of many features of Ruth's chair creeping into commercially-produced wheelchairs. Secondly, the assumptions previously made about the disincentive effect of "easy" mobility on the use of self-propelling mobility aids should be questioned, in the light of the enormous social, psychological and education benefits of the early freedom a wheelchair gives. Thirdly, and most important, she teaches us how vital it is to give the right aids at the right time, so that disabled children don't miss out on the experience and fun to be had at the pre-school stage, and can participate and compete more easily with their class-mates when they go to school. The importance of this for the rest of lives is obvious.
Louise Everard, November 1983