ten-year-old Sarah had long wanted to join the after school club with her younger brother. Although her cerebral palsy meant she had indistinct speech and used a wheelchair, she had always attended mainstream school with the support of a non-teaching assistant.
Now she was becoming aware of her friends' steps to independence and was nagging her parents to let her attend club. As the staff made their plans to receive her a number of interesting points about inclusion came to the surface.
UNDERSTANDING THE PARENTS
First and foremost, the playworkers had to recognise the anxiety of Sarah's parents. Some parents in their position would be anxious about the child's safety and ability to cope. In Sarah's case this was less of an issue because her carer would be going to club with her. But, of course, this new step for Sarah was highlighting her parents' anxiety about how she was going to cope with life as a teenager.
Parents show anxiety in a myriad of ways, perhaps checking every detail is in place obsessively before the child starts club, or demanding very special arrangements that may be difficult for a club to provide.
It is easy for club workers to be left feeling criticised, incompetent or even uncaring in the face of a parent's anxiety. We need to constantly bear in mind what a stressful time joining club may be for the parents.
IMPACT ON THE STAFF
The phrase 'special needs' is ambiguous; while it describes Sarah's predicament accurately, there is a risk that it sets her apart.
Sarah's assigned keyworker seemed particularly anxious and worried the day before Sarah arrived. 'What if I can't manage her ... what if I don't understand her?' She was a highly experienced playworker but was feeling deskilled by Sarah's 'special needs'.
While it was true there were certain different physical needs in terms of toileting, and so on, Sarah's main needs in club were exactly the same as any other 10 year old's. In this sense, there was nothing about Sarah's needs her playworker did not know. But disability raises all sorts of anxieties about the unknown and the different.
It is a human reaction to be anxious that we may not understand something or someone new and different.
ANXIETY AS A COMMUNICATION
Sarah's arrival in club went well. She settled in quickly and seemed relaxed and happy during her first few days. So I was surprised to find not only Sarah's keyworker but also the other playworkers feeling worried and anxious by the end of the second week.
They found it difficult to put their anxiety into words. 'Sarah seems almost too confident,' said her playworker. We thought about what overconfidence might be a solution to and what might be being communicated.
Babies communicate by projecting feelings. They make the adult feel what they are feeling. Anyone who has held a crying baby will know how difficult it is not to begin to feel either panicky or angry.
When children cannot put their feelings into words they may fall back on projection to let the adult know how they are feeling. Children's feelings are raw and primitive and it can be difficult not to be overwhelmed.
Once the staff began to think of Sarah, and perhaps the other children, as feeling anxious and worried, their own anxiety began to decrease and they were able to think creatively. It is difficult to admit to our anxieties or fears of not coping and this may be particularly so for a child with a disability. They may feel they have to do twice as well as the others to get on in life. They may also have grown up feeling praised and admired for the way they cope. Asking yourself, 'How does this child make me feel?' may give you a real insight into how the child with special needs is feeling.
DISABILITY GETS INTO THE SYSTEM
Sarah attended a very well run club with a professional staff. Several weeks after she joined, her playworker reported an interesting incident.
The club was going to a local beauty spot for an afternoon picnic. She had been shocked on the arranged day to discover that she had booked the coach for the following day. The trip was rearranged for the next week when, to her absolute horror, she realised she had booked the coach to arrive at the collection time! This was so unlike her that everyone was bewildered.
In any group of people there is an unconscious dynamic which sometimes lodges in one or more members of the group. We have all had the experience of being in a jocular group which has grown flat and dissipated when a more depressed person has joined it. It is not uncommon for people working with someone with a disability to sometimes find themselves 'disabled' in their skills and management.
At an unconscious level, we sometimes have to carry the disability for the child so that they are free to succeed. The risk is people will feel critical of themselves or others for being incompetent rather than understanding that sometimes disability gets into the system.
IMPACT ON THE CHILD
Before Sarah joined club her playworkers discussed at length with her parents the nature of her disability and also how much Sarah herself knew about her disability. Sometimes staff are reluctant to do this because they feel there is a risk of defining the child by their disability. While this can happen, we can also argue that it is essential for staff to know what impact a child's disability is going to have on their club life.
What a child understands about their disability colours the way in which they see the world as much as their physical problems. If we ask a blind child and a deaf child to describe a thunderstorm they experienced together, the blind child is likely to describe thunder and the deaf child is likely to describe lightning. They have a very different reality about the same experience.
Learning as much as possible about the child's disability is as much a way of getting to know the child as an individual as is seeing beyond the disability to the individual child.
BUILDING CONFIDENCE
The staff were understandably anxious to help to 'build Sarah's confidence'. The best way was to be as realistic as possible with her.
There should be no mysteries about her or surrounding her. For this reason the staff felt it was important to try not to hide the fact that Sarah was different. For example, when she seemed sad or anxious about activities, such as disco dancing, which she could not join in in the same way as other children, the staff resisted the temptation to distract her with comments such as, 'Oh, but you are so good at table tennis,' focusing instead on her feelings, by saying something like, 'It is disappointing that you have to be in a wheelchair ...' and then seeing where she took the conversation.
Later on, you can draw attention to other qualities and abilities if it feels appropriate, as a way of highlighting for a child with a disability that they may have things that other children would like to have.
THE RISK OF TEASING
Teasing is part of everyday life and you may not be able to prevent it.
However, children are most influenced in their attitude towards each other by the behaviour and attitudes of the adults around them. Staff can do much to foster a general attitude of respect and tolerance in club and, in particular, towards those who may seem a little different.
It is important to be aware of envy when a child with a disability is present. Some children will be envious of the special attention such children receive. Equally, Sarah was gradually able to voice her envy of the other children's relative freedom. Sometimes envy is expressed as teasing or bullying.
ACCEPTANCE AS AN EQUAL
7All children use their abilities and disabilities to their own advantage.
Everyone wanted to help Sarah, sometimes doing things for her that she was clearly able to do herself. Overprotection stunts children's curiosity and independence. Staff needed to watch that Sarah did not become the 'club pet'.
Other children were encouraged to accept her as an equal who may sometimes need a little extra help. Otherwise, Sarah could grow up feeling the only way to cope with life is to be helpless and helped. Her confidence grew as she realised there were many things she could achieve at the same level as others.
We need to remember 'special needs' are exactly what they say - unique and special to each child. In club, each child will experience another's disability individually but there will be an unconscious peer pressure to 'agree' on disability. Workers need to be alert to each child's unique understanding of what it is like to have a disability.
Andrea Clifford-Poston is an educational therapist and author of Tweens: What to Expect From and How to Survive Your Child's Pre-Teenage Years'
(Oneworld, 9.99)
