“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?