Young adults of whatever ability want to feel more independent in the way they live their lives, whether this is in education, employment or another activity.

Sheila and Martin Hollins (UK)

The following extracts are from You and Your Child: Making Sense of Learning Disabilities, a book which aims to help parents recognize and understand how their child is both similar and different to other children. It also aims to help parents in the sometimes difficult task of communicating with professionals working in the fields of education and medicine. Throughout the book, the stories of six children with learning [intellectual] disabilities, told by their parents, capture the reality of their individual differences as babies and toddlers through to young adults. Featured in this extract are four of these children as they approach adult life:
  • Neil has a moderate learning disability, with specific language difficulties
  • Jay also has a moderate learning disability, with a specific medical syndrome.
  • Kirsty has Down's Syndrome, and has overcome heart and hearing problems
  • Carol was born with severe brain damage. She is profoundly and multiply disabled.

Making the most of being different
Young adults of whatever ability want to feel more independent in the way they live their lives, whether this is in education, employment or another activity. This is a continuing concern for all parents, but how can we manage this with our more vulnerable offspring? Careful attention to social life can be very helpful. Building on previous success is always a good idea. For example an activity such as a sports team, scouts or guides may have an older counterpart group, in which some of the same people are involved. Friendships can be maintained, and the knowledge of particular needs is more readily available. But they may want to engage in something different. Most local authorities will have programmes run by social services and can provide details of other agency provision. These can be as diverse as 'drop-in' clubs enabling young people to meet and make friends, residential holidays where deeper involvement in activities and in relationships can be fostered, to specific interest groups which can provide continuing opportunities for development such as music or drama.

Participation in these kinds of activities can help the young adult feel less different from their peers, whether the group they join is special or mixed, because they are doing similar things as their siblings, or people that they see on the TV. In doing this we may support them in developing their relationships with us, in the family, by bringing back their own different experiences from the outside world.

However, the choice of social activities and opportunities to develop close relationships are more limited for young adults with learning disabilities. Neil's mother describes how difficult it is for him to make social relationships as a teenager:

Neil had had a bad day. His drop-in club was closed and he had found it hard to accept this. At supper his younger sister was talking about going to a youth club. He was angry - 'she's not old enough to go to a club. I go to clubs - not Eleanor'. He threw his food on the floor and later that evening stripped her bedroom door of all its decorations and threw them out of the window.

Jay fared rather better at having a full and varied programme of leisure activities. He made very good progress in sports, both at school and in out-of-school clubs. His father reported that:

In the evenings Jay attends two swimming clubs and one sports club most weeks. We often provide transport to and from these, while occasionally he goes by minicab or, rarely, by bus under our supervision. We also take him to speedway and stockcar meetings in a nearby stadium when he wants. He likes to go for ten-pin-bowling evenings with people from his centre. Less often he goes to disco or quiz nights at his centre. During weekends he sometimes goes to the cinema or restaurants with us. He often prefers to eat in a cafe or a burger bar by himself while we wait outside. He also likes going to a library or a pub evening with us. He loves going on holidays abroad with us and at times he goes away with his swimming team e.g. he will be going to Glasgow next year for a week for special Olympics with his team. He loves music and television.

Engaging with the wider world
The world can offer a bewildering range of options to parents at this stage. Further education may involve moving from school to college; college may offer work-related courses, access to employment schemes and part-time placements in work. Social activities need to be arranged in ways that are increasingly separate from school or college. And then there is the need to think seriously about the long term, in particular about working and living options. How independent can our young person be in the future?

Jay enjoyed Residential College more than he missed home or us. He could practice some of the things he had learnt earlier, and also learnt some new things. After two years we applied for him to live in a local group home and were again happy that he was accepted. He has been living there for almost three years now. Until a few months ago he wanted to come home every weekend, like he used to do before, but that has now reduced. We still see him almost every day but the duration varies a lot.

At 17, Kirsty moved to a Link Course at the local Further Education College and enrolled on a vocational access course. She also enjoyed a dancing class elsewhere, relying on her parents for transport. All the young people had Down's syndrome and as Kirsty had attended ballet classes from age 6 to 10, she was very capable. This improved her self-confidence a lot and enlarged her friendships. Now she is in her twenties and has a varied occupational portfolio. She does paid office work one day each week and has a training work placement in a café.

Throughout these years Kirsty's older siblings were also growing up, taking exams and bringing friends home. They were having boyfriends and girlfriends and eventually getting married and having children! Kirsty was sad each time one of them left home and used to ask them to come back. Now she visits them and sometimes says she wishes she could live like that. Later she will say she couldn't cope with a baby and anyway she wants to stay home with us.

Both Jay and Kirsty are relatively able and can make many choices for themselves. However, it seems that young people with profound and multiple learning disabilities have fewer choices at times of transition - though perhaps it would be more accurate to say their parents have fewer choices as Carol's mother explains:

We did not seem to experience much in the way of transition with our daughter Carol. One day she was in school - a local special school - and she received some limited help from children's services: some respite care and a nurse twice weekly from the health services. Then she left school and was at home full time with no support whatsoever.

It took a change of social worker and a year of struggling to eventually organise Direct Payments and Independent Living Funds in order to buy in the services she needs. Direct Payments are an arrangement where disabled persons "employ" a personal assistant of their own choice at hours that suit them, within the provisions of the transition plan or care plan agreed by social services. Also I have now been able to arrange live-in help!

It is still not altogether satisfactory, but it is better than nothing. I am looking to the charity Sense to provide an Intervener Service - a full-time carer during the day and a range of alternative activities suitable to the needs of a severely multi-disabled young person who is deaf and blind. Also, we are looking for some appropriate respite care.

The long term commitment of all of these parents is clear. We think it is important to keep on listening to families as the years unfold. Someone in the family, as well as a care manager from social services, needs to keep up to date with new opportunities and to be familiar with support systems such as Supported Living, Supported Employment and Direct Payments.

These extracts are taken from You and Your Child: Making Sense of Learning Disabilities by Sheila and Martin Hollins. Published in 2005 by Karnac Books at £8.99.  Article published on the website in 2005. Reviewed in 2019, content continues to be relevant.