Jemima:
Cerebral Palsy
[Under
development 23 April 2009]
My wife and I were warned
that Jemima's considerable prematurity put her at
risk of cerebral palsy. However, it was not until Jemima was six months old
that we started to become seriously disquieted about her lack of motor
development. It was a further six months before we knew for sure that her
disability was due to cerebral palsy. At the time, confirmation of the
diagnosis (which we had come to expect) was a relief because we still had a lurking,
skulking fear that her problems might be due to a degenerative illness. My
heart goes out to parents of children with a degenerative illness.
Jemima being quadriplegically disabled, the enormity of her
physical disability is too great to conceive as a single concept. There are issues relating to the intimate involvement of others
(parents, teachers, nurses) required to dress, feed and toilet her; the torture
of constantly cramping limbs disturbing both her waking and sleeping hours, for
which she is given doses of an antispasmodic medicine called Baclofen; the inability to sit, to crawl, to walk, to run,
to skip or to jump; the frustration of not being able to make herself
understood because her mouth cannot make the correct sounds; through to how she
will make friends and have a fulfilling life; what will happen when she leaves
the full-time education system; and how she will manage in practical and
financial terms in the future once her parents have died.
The effects of Jemima's disabilities on her
parents have been both restricting and liberating. The restrictions cover as
wide a spectrum as her disabilities, from the personal, for instance:
she must always be dressed,
fed and toileted;
wherever we go we must
locate wheelchair access to buildings with entrance steps, such as shops,
offices and cinemas;
if we stay away from home,
we must locate wheelchair accessible hotels and restaurants;
we have to act as
communication intermediaries;
to wider life choices, such as where and how we want to live
(few schools in the
Disappointments
Jemima's physical disabilities are also showing
up shortcomings regarding the circumstances of Jemima's educational provision.
One of the types of professional input clearly required is occupational
therapy. Evidence of this need came to light when I
stumbled over the fact that, when the heel of her hand is pressed towards the
outside of the wrist, Jemima is able to grip small objects with her fingers. I
contacted an occupational therapist, and as a result, a simple device called a
wrist splint was supplied. Had Jemima been in receipt of regular input from an
occupational therapist, it is likely that the wrist splint could have been
supplied years ago. Who knows what opportunities have already been missed, and
what are currently being squandered?
The school, sadly, chooses to forego the
involvement of an occupational therapist, claiming that responsibility for
occupational therapy lies within
Since first writing the above paragraphs, some
developments that have been long in the pipeline have materialised. Most significantly,
Jemima has been given the use of a Dynavox computer
that can speak on her behalf. Her means of controlling the computer involves a
microphone strapped to a headband, and a scanning program on the computer that
cycles through nested options permitting the progressive construction of a
sentence. It is early days, but we feel certain that she will be using the Dynavox for many years to come.
New Strength
It may seem ironic that the fettering necessarily
associated with meeting a demand for unremitting attention can also serve as
the stimulus for some types of liberation. We have pushed ourselves to do
things we might not otherwise have done. In particular, we have travelled extensively.
For instance, we have taken Jemima to
However, there are also more sombre clouds on the horizon. Due to her inability to walk and the cramping in her legs, her hips developed poorly, and one was dislocated, causing her increased pain. She had to have a surgical operation to rebuild her hip. The waiting list for paediatric orthopaedic surgery was long, and it was many months before the operation could take place.When it finally happened, the operation was traumatic for us all, as Jemima was in hospital for many weeks, and in plaster for many months.
Further surgery will also be likely in order to ease
her muscles as they cramp and contract. There are also fears about the curvature of her spine.
