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3. Independence and self-help skills

The ability to take care of everyday personal and social needs clearly improves the quality of life for any child or teenager. It is also important for children's sense of self-esteem and control over their lives. While most milestones in independence will be achieved later for children with Down syndrome than for typically developing children, the evidence suggests that by late teenage and early adult years most young people with Down syndrome do achieve a high level of autonomy in daily personal care.^[5] Their independence skills outside the home are improving but many still need supervision.

There will be individual differences in rates of progress towards self-sufficiency and studies show a general link with cognitive skills, that is children who are progressing faster on cognitive measures are likely to also progress faster with self-help skills. However, family styles also have an influence for most children, in addition to cognitive ability.^[62-64] Parents who use practical coping strategies, seek out support and advice, and have more extensive social networks, have children who progress faster in social independence.

In some areas, it is probable that parents and carers should have higher expectations and should consider the possibility that they are still doing more than is necessary for the young person with Down syndrome. There is a link here with a point made in the section on friendships. It is very important to recognise the right of adults with Down syndrome to be adults and to gain as much privacy, independence and autonomy as possible. Independence also contributes to a young person's self-esteem. Privacy is a particularly important issue to consider. It is not helpful to have to assist a teenager in the bath or shower for any longer than is absolutely necessary, as it reduces their right to privacy. It is easy for parents to go on helping young people for longer than is necessary, rather than think about how to teach them to wash and rinse their own hair, fill the bath, set the temperature on the shower or cut their own nails using clippers.

In order to become independent, it will be necessary to recognise that some risk-taking is inevitable. Using a kettle or cooker, walking to the shop and crossing the road all carry risks. Risks can be minimised by designing training for each activity in small steps.

Children with difficult behaviours make less progress in independence, as do the 10% of children with the most severe developmental delays. The authors feel that this latter group of children and teenagers should be seen to have different needs from the majority of children with Down syndrome. Parents may wrongly blame themselves for the slow progress of their children when, in fact, their child has multiple difficulties delaying their development.

Infancy and preschool

Important milestones on the way to personal independence are usually gained in the first five years of life and, while children with Down syndrome do take longer to reach them, the figures in Table 1 illustrate that they are usually making good progress by five years. Most children are walking, able to partly dress, able to feed themselves with a spoon and fork and are toilet trained. Children vary widely in rates of progress and there is little information on the best way to encourage independence. Personality and temperament play a part, with some children happy to be helped to learn in small steps and others refusing help to learn but doing things entirely for themselves once they can. Toilet training is a particular issue for many parents and the authors' practical experience suggests that a daytime training routine should be planned and consistently implemented by about 3 years of age. Most children with Down syndrome can be trained by 4 years, though not all, as some may have greater developmental delay or other physical reasons for delay. However, most children starting school at 5 years are trained by a consistent approach within weeks, suggesting that training could have been achieved earlier.

Primary school years

During the primary school years of 5 to 11, children with Down syndrome steadily improve their self-help skills. In the main, they are developing and refining skills that they have begun to master in the preschool years, such as becoming less messy at eating and drinking, improving their fine and gross motor co-ordination in writing, managing fastenings, hopping, jumping and becoming able to manage all toileting procedures without any assistance.

It is important that parents and teachers let children do as much as they can for themselves. There is always the temptation to help or do it for the child because it is quicker but this is not in the child's interest. Practice is needed to perfect skills and it is also important that children take responsibility for themselves for the sake of their sense of control over their lives and their self-esteem. Data on this issue is not available for this age group but data for teenagers in the next section highlights a tendency to continue to help even when the young person is competent.

Teenage years

During the teenage years, most young people with Down syndrome become quite independent in personal care skills, as the figures in Table 1 indicate. Almost all young people can wash, dress and use the toilet without help. However, there are areas where parents need to encourage further independence. For example, 95% of teenagers can brush their own hair but only 45% actually do so each day. This suggests that parents still find it quicker and easier to brush their teenager's hair for them or that parents feel that they can produce a better result themselves. These are important points to be considered by all parents. Many parents do report that they still dress teenagers, even though they could dress by themselves, because it is quicker. Many parents report that they still help teenagers with tasks because the end result is then neater, cleaner or smarter. However, the teenagers' own skills will only improve with practice, and parents need to be prepared to accept a less than perfect result while the teenagers are learning. This is often hard to do and the first author has clear memories of finding it very difficult not to tidy up her daughter's appearance when she began to choose all her own clothes and dress without help. She also found it difficult to resist the temptation to tidy her hair for her. Even more difficult was accepting that independence in the toilet might result in stained pants until her daughter had had some practice at wiping herself.

Young adults

Many young people continue to develop independence in their early adult years. Like most other young adults, they often take significant steps in taking charge of more aspects of their daily lives if they move out of the family home into some form of supported living. Most young people are happy to let their mothers continue to do the cooking, shopping, laundry and the cleaning while they live at home! Most young adults with Down syndrome can take care of their laundry and their domestic cleaning, they can make simple meals, they can take care of their personal hygiene, and they can take care of their own money in bank and savings accounts, with minimal support. It is often at this stage that young people become more independent in travelling in their communities, using buses and taxis.

A noticeable increase in self-esteem and self-confidence is often observed in adults when they have a home of their own, independence, privacy and control over decisions in their daily lives.