Looking ahead

Introduction

It is difficult for some parents and young people to look ahead. Often this is because coping to-day is so demanding that it takes up their whole effort. Sometimes, looking ahead is too painful and distressing. One mother wrote:

‘You know how it is, you deal with the short term because the long term is just so difficult to even imagine.’

Some professionals can be too busy coping with their daily caseload of urgent things that they don’t seem to have time to prepare the family for what lies ahead. Yet, the advice from most families and professionals who have passed through this maze is that you must look ahead, and be prepared for each stage.

When the child with arthritis starts to attend secondary school they are preparing for adult life. Like their peers, young people with arthritis endure the normal physical, social and emotional changes that occur during adolescence. However, there are additional challenges because of the disease, ongoing treatment and physiological impact of long-term arthritis. The material in this chapter is intended to help you think ahead, and have positive expectations, it gives some suggestions about how you can support your child to look ahead with hope and realism.

Positive expectations for the future

The expectations of the young person, parent and schools influence what the young person can achieve in adulthood, and how she prepares for fulfilling adult life. Expectations for the future need to be realistic and clearly related to what the young person is good at. A young person who hates science at school is unlikely to become a career scientist, whereas someone who cannot write with a pen can use computer systems to enable them to become a successful writer. Parents, young people and professionals can together find ways to help young people achieve their ambitions. Young people may achieve far less than they are capable of when their families have poor expectations for the future.

Transition from dependent child to independent adult

The terms ‘transition’ or ‘the transitional phase’ are used by professionals to describe the process of dependent children becoming independent adults. Transitional care refers to services that help this process. The good news is that in the United Kingdom, there is growing recognition that the needs of adolescents are special, and that specialist transitional care services best meet the needs of young people in this phase [1]. In 2000, an important national project, sited at the University of Birmingham, began to research the needs of adolescents with juvenile idiopathic arthritis, and to develop national guidelines for specialist rheumatology services. This work is ongoing and on completion should bring about valuable improvements and standardisation, so that wherever they live, young people with arthritis should receive similar standards of specialist care.

Encouraging independence

Part of the transition process includes helping the young person to become as independent as possible with her personal choices, daily living skills and relationships. Some young people with complex health and social support needs will need assistance to express their preferences, so that the young person can take an active role in planning her future.

In most instances, the progress with gaining as much independence as she is physically capable of begins with the parent being willing to hand over responsibility to the young person. In a recent report one young person wrote:

“If anyone were to ask me what message I might have for others I would tell them that they should listen to, believe and respect young people. In my experience it is very difficult to tell anyone how you feel when they won’t listen; if you aren’t believed then you stop believing in yourself; if you’re not respected then you lose your self-respect and everyone needs self-respect.” [2]

[1] Beresford B (1995), Expert opinions: a national survey of parents caring for a severely disabled child. Bristol: The Policy Press (The Joseph Rowntree Foundation).
[2] Joseph Rowntree Foundation (1999). Study by Jenny Morris, ’Hurtling into a void’: transition to adulthood for young people with complex health and support needs. Published for the Foundation by Pavilion Publishing. Précis on Foundation webpage at www.jrf.org.uk