“Our daughter Sharon is 16 years old and is severely learning disabled. She is doing very well at her special school. However, her teacher has started giving the class “independence” training and Sharon is complaining because we don’t let her take the bus to school. (My wife or I always drive her to and from school because her behaviour makes her vulnerable).”
Mr and Mrs G.
Weaning does not end when a baby starts taking solid food. It is a process that is involved in each new stage in a child or adolescent’s life. For the parent, there is pleasure in the new step taken but also a loss. In gaining the child we say goodbye to the baby. Each year our job as parent changes until the point where the young adults take responsibility for themselves. However, as well as feeling loss that changes happen, there is also relief and pleasure as healthy development progresses. We worry when children do not want to grow up, when difficult events in their inner or outer lives slow down their growth.
However, when a child is severely or profoundly learning disabled parents are faced with a particularly painful situation. Development is not following the normal path. The child is not going to grow up and leave home in the way he could if all was well. For the parents of such a child each new stage, starting infant school, starting secondary school, leaving school, can bring a renewed sense of loss and grief. All the rewards other parents get to help them deal with these life events are pared down. When a young adult leaves home and shares a flat the parents can feel proud that this step was possible and that helps to alleviate their sadness that their nest is empty and they are getting older. When a severely or profoundly learning disabled young adult is found a place in a residential hostel the impact is very different.
To help themselves deal with the tragic reality of having a child who will not grow up normally, parents often stay attached in a way that is more common to parents of very little children. Teachers, residential workers and friends then complain that such parents infantilise their grown-up or adolescent children and hinder their independence training. This is a painful situation. It is often hard for workers, who have chosen to be with this group, to understand what a blow parents receive when their child is severely disabled, however much they may love them. To know that your child will never be capable of independently managing life but always needs the help of others is hard to take. It means staying stuck in a parenting role while other parents have slowly and gratefully loosened the umbilical cord and gained more freedom.
Whilst Mr and Mrs Smith start going out more because their children have left home, Mr and Mrs Jones have to manage a permanent rota for their incontinent, cerebral palsied severely learning disabled son. Whilst lucky couples in their sixties and seventies can relax and offer some occasional grandparent time those with severely learning disabled grown-up children are still having to physically tend them; half a century of 24 hour parenting. Some loving ageing parents would happily give up or share the burden of this endless task if their local provision was of a standard they were happy with. Institutional or Community housing can sound extremely attractive in theory but the practice can fall short in many areas.
Of course there are parents, with or without disabled children, who hang on in destructive ways, finding themselves jealous of their children’s development. Adolescence, as a time of developing sexuality and independence can stir up adults who have not had a chance or wish to think about their feelings. Some parents try dressing or behaving like their adolescents to deny their own ageing process. “We’re more like sisters than mother and daughter”. Others, for similar reasons, try to restrict their children’s development. A severely disabled adolescent who has a longing to develop and is well supported by community workers or his school can also stir up feelings of rivalry in his parents. On the other hand, the parents can also often rightfully complain that their child is getting help but no-one has offered anything for them.
So what can Mr and Mrs K do? If Sharon is doing well at school and the teacher seems part of that improvement perhaps they can meet with her to discuss their concerns. If she can understand their fears and they can appreciate her talents there might be a way of creating a test journey. Teacher or parent could make the familiar trip with Sharon the first time. The second time they could sit a long way away from her so that she dealt with the conductor and getting on and off the bus by herself. If that went well, perhaps a solo journey with someone waiting at the other end.
On the other hand, they do not tell us what Sharon does that might make her vulnerable when travelling by herself. Does she rock up and down, groan or mutter to herself, approach strangers inappropriately? Is she at risk of being sexually abused? Is the bus-route a relatively peaceful one or does it pick up passengers who could be a threat to Sharon. Buses containing some children from so-called “normal schools” make for a frightening ride for any passenger, let alone someone particularly vulnerable! On the other hand, might Sharon endanger other passengers? Is the difficulty not learning disability but emotional disturbance? Too many times, mental illness is left untreated when it is hiding behind disability. There is a shameful lack of psychotherapy provision for this group.
Finally, it has to be acknowledged that if the disabled individual is severely disturbed, some ordinary activities are not suitable. Who does it benefit taking 20 year old Jean to the shops when she keeps pulling her clothes off? It is neither an aid to Jane or the rest of the community. We need to be able to attend to the difference between disability and emotional disturbance and to the difficult line between protection and restriction.
Is the fear not of a daytime bus journey but of further independence that might follow it? For example, night-time journeys? Boyfriends? Marriage?