Jemima: Cerebral Palsy

[Under development 6 February 2005]

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 UK or elsewhere in the world would be able to rise to the educational challenges which Jemima presents).

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 County Durham. In contrast, the Authorities in County Durham claim that, because Jemima attends school outside the county, it is the school's responsibility to make this provision. The same claims were made regarding the provision of speech therapy, although the school now provide some speech therapy. It angers me that the actual and acute needs of a disabled thirteen year old girl can be ignored, year after year, in favour of demarcation squabbling between different Authorities and providers.

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 Paris about half a dozen times, including going up the Tour Eiffel again after 30 years. Twice, now, we have driven with Jemima from Durham through the Channel Tunnel to visit her cousin, Magali, who lives on the Côte d'Azure. Our three trips, to date, to Canada with Jemima were also making the statement: "We can curl up and do nothing for the rest of our lives, or we can grasp life with both hands and try to live it to the full." It is clear that Jemima has benefited from these experiences. When asked recently about where was her favourite place, she replied "Canada". She loves seeing aircraft for the promise they hold. She has a clearer concept of world geography than I had at her age, and loves maps.

However, there are also more sombre clouds on the horizon. Due to her inability to walk and the cramping in her legs, one of her hips is developing poorly, is dislocated, and is causing her increased pain. She must have a surgical operation to rebuild her hip. This operation will be traumatic for us all, as she will be in hospital for many weeks, and in plaster for many months. Furthermore, the waiting list for paediatric orthopaedic surgery is so long that it will be many months or even years before the operation can take place. Further surgery will also be likely in order to ease her muscles as they cramp and contract.

p.g.h@btinternet.com

Jemima: sitemap

Peter Hughes: Introduction