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Meeting the needs of children with Down syndrome

The profile of development discussed in the last section suggests or identifies some priorities for assisting the development of children with Down syndrome.

The first months of life - health and family priorities

Health

All developmental progress will be affected by illness or ongoing health problems. Ideally, all babies with Down syndrome should be in the care of a paediatrician, who will screen for heart defects and be alert for any health risks associated with Down syndrome. Parents should also have access to support from health workers, such as health visitors, for general advice. Sometimes help in establishing feeding is necessary, though many babies feed and breastfeed well. The common health issues for parents and carers of children to be aware of are dealt with in the Health section. It is particularly important to be alert to hearing difficulties as they affect some 80% of preschoolers and even mild conductive losses can have a significant effect on the children's development. A detailed DSii series of Health modules to inform doctors and healthcare professionals as well as parents, will be available during 2002.

The family

A further priority in the first months is for the family to adjust to the birth of the baby with special needs. This will be helped by the availability of accurate information on Down syndrome and the sources of local support such as parent groups and Down syndrome associations. In some countries, financial benefits may be available and parents need to know what these are and how to apply for them.

Social development in infancy

In the first year of life, social development (smiling, cooing, babbling and socialising) is usually only slightly delayed and in the first months of life babies with Down syndrome are usually much like other babies in their social behaviours and early communication skills. They are responsive and enjoy social interactions with their parents and carers.

Motor development

Motor development is the next concern as babies' first motor skills, the ability to reach, grasp and hold, are important for beginning to explore their physical world and sitting, rolling, crawling and walking enable babies' to explore on their own. Delays in fine and gross motor skills therefore influence cognitive and language development, as they reduce the opportunity to explore and to move around to socialise. Assessment by a paediatric physiotherapist should be available to all babies with Down syndrome. Some babies will be fine with normal stimulation and exercise but others will benefit from expert advice, equipment and exercises.

The authors encourage all parents to find activities for children in the community for sports such as swimming, gymnastics, horse-riding, dancing or football. These sporting activities contribute to health and motor skill development - and a sporting skill developed in childhood provides teenagers and adults with leisure activities and social opportunities.

Learning to talk

The next developmental target is learning to talk, which typically developing babies begin to do from 12 months on. All babies with Down syndrome will benefit from the support of a speech and language therapist from birth, as although words come in the second year of life, the foundations are being laid in non-verbal communication skills and babble from the first weeks of life. Babies are beginning to understand the words used around them, and to point to objects from about 9 months of age. Babies with Down syndrome may have hearing difficulties, and the use of signing so that ''they can see what you mean'' has been shown to be helpful. Parents can use signs to help their baby to understand from 9 months of age.

Babble is practice for speech sounds and this is also developing from the first year of life. In the second year of life, babies begin to use single words and then join words together. Babies with Down syndrome can often sign words before they can say them, as speech production difficulties hold back spoken words.

Speech and language therapy, targeting understanding and production of words and sentences, and targeting clear speech production (articulation and phonology) is therefore important throughout the preschool years. However, learning to talk is a daily activity and is mostly learned with parents, who can help their own children if they have no access to therapy. The speech and language modules and checklists are designed to be used by parents, ideally with the support of a therapist, but on their own if necessary.

Behaviour

By twelve months of age or earlier, the issue of encouraging socially appropriate behaviour needs to be considered. Many typically developing babies are already controlling their parents at this age - for example demanding to be picked up, arranging their own sleeping schedules, showing preferences for foods and eating behaviours - and by two years of age demands for independence and tantrums in order to determine what they will and will not do are common. Children with learning difficulties, and in particular children with delayed speech and language skills, are vulnerable to developing difficult behaviours. Children with Down syndrome often do display more difficult behaviours than typically developing children, but less difficult behaviours than other children with similar levels of learning difficulty - perhaps reflecting their ability to understand non-verbal social and emotional cues. However, the authors firmly believe that 'prevention is better than cure' and much difficult behaviour can be avoided if parents have thought about the issues and adopted good management strategies from the first year of life.

Professionals involved with providing services and support to families at this time should be competent to advise on good behaviour management techniques. Two simple pieces of advice will help to avoid problems and that is - establish settled routines so that the baby can feel secure and anticipate his or her daily activities and - be in control. Routines and set times for mealtimes and bedtimes also mean that parents are in control - they, and not the baby, determine the baby's behaviours. Babies and children feel more secure in an environment of order, warmth and control. Because behaviour and more advanced social skills are so important for the future lives of all children, social development, including behaviour and self help skills is covered in detail in separate modules.

Cognitive development

Cognitive development is a term used by psychologists and teachers to cover all the skills involved in learning and mental processing, i.e. thinking, reasoning, remembering and learning skills. In typical development, speech and language skills play a central role, as thinking, reasoning and remembering are usually carried out by means of 'inner speech'. Young children predominantly 'think out loud' i.e. talk to themselves, especially when into imaginative play and it takes several years to prefer to think silently. Many adults still engage in thinking out loud at times.

Cognitive development also refers more broadly to acquiring knowledge about the world and understanding the physical and social world. Knowledge is obtained through all our senses, with vision and touch being the most important in the first year of life. Babies are watching all the activities around them and exploring toys and objects within their reach. The way in which a baby or young child plays with toys is usually a good indication of the level of understanding that they have reached about the toy and how to use it (posting boxes and stacking toys, for example).

In the second year of life, children begin to show how they are understanding the behaviours and actions of those around them, and the events in their world, as they play in imaginative ways with their toys (making meals, putting dolly to bed, playing at being the farmer and playing with trains). The role of play in children's development is therefore a very important one and play activities can be used to teach many things. Structured teaching is also important by the second year of life. By structured teaching, we mean planned teaching activities to teach vocabulary (matching and selecting pictures) or to learn colours and counting, by sitting together on the floor or at a table, copying the actions of a 'teacher' and following instructions.

Children are also learning during all their everyday activities at home, when out shopping or at the park, and in playschool. During daily activities, play and structured teaching sessions, adults can scaffold children's learning, that is they can help children to reach the next step in their play and in understanding the task, by modelling - showing them what to do and by explaining - talking about what to do. They can also show pleasure and make games and teaching activities fun and rewarding by being interested and joining in children's activities. The way in which these different approaches to teaching children can be used is discussed further in the section on Early Intervention later in the module.

Cognitive development in the first 1 to 2 years focuses on children's ability to develop increasing abilities in manipulative play with toys and then their understanding of the world around them demonstrated in their imitative and imaginative play. As their understanding of language grows, they learn more about the characteristics of the objects and events in their world, the size, colour and shape of things, whether they are hot, cold, wet, or dirty. They learn about actions, running, swimming, washing, moving fast or slowly, and they learn about place, putting something in, on , under, behind another object. This is all cognitive knowledge and it is usually taught with the words for the concepts. Learning about attributes such as size, shape and quantity and time is laying the foundations for the maths curriculum in school.

Speech and language development is inextricably linked to cognitive development in typically developing children and, when children have speech and language delay, it is important to recognise the impact of this and still try to teach as many concepts as possible with toys and real objects, as many of the attributes are visually or perceptually obvious and can be experienced by looking and touching. Children with Down syndrome will be helped to learn by shared play activities and all opportunities that are available during daily activities. They will also benefit from structured activities and this is why, in many countries, early intervention services are available and families have the support of a home-visiting teacher.

By the preschool years, 3 to 5 years, children are learning to count and they are gaining wide experience of books, ready to learn to read. They are also learning to gain pencil control for writing, by colouring and drawing. Children with Down syndrome can begin to learn all the same things, if at a slower pace. The author's encourage games and activities to teach concepts, number, reading and writing skills throughout the preschool period and cognitive development is divided between the Speech and Language, Number, Reading and Motor skills modules. In addition, we have a module on memory, as memory skills, particularly working memory skills are important for all daily activities and for learning. During the early years to 3 years, most learning will take place at home but from 3 years, many children have the opportunity to join a play group or kindergarten and learn with other children.

Attention and memory

In order to learn, children have to attend to information in their world, usually by looking or listening or touching, and they have to attend long enough to take in the information and to remember it. Therefore attention and memory skills are important.

Attention

Most babies and children with Down syndrome do not have any attention difficulties, but some children do seem to have limited attention from infancy. It is therefore important to engage children in activities which require them to attend, using play activities and picture book reading to engage children's attention, for example, from the first year of life. Some children seem to have difficulty focusing their own attention and so are not able to play or occupy themselves without support. They may then become quite difficult to manage if they are physically mobile. Other children may be difficult to engage in one-to-one tasks at a table and this will lead to difficulties in preschool and school. It is, therefore, important to encourage babies to engage in early 'face-to-face' babble games and to continue from this to playing with toys and looking at books together by 12 months or so. If a child's ability to attend is limited, it is helpful to find activities that they enjoy - often noisy toys or toys with moving parts are motivating - and then take turns with them to keep them engaged for longer periods. Only extend the period that the child is expected to attend for in small steps. Looking at books together is often a good way to move towards sitting still for more formal learning at a table. To encourage children to sit at the table, choose activities that are fun, that the child enjoys, and can be successful at. Often it helps if the table activity can be a group activity with more children or adults, to take the 'pressure' off the child with Down syndrome.

Attention and motivation are usually, though not always, linked. Sometimes children are described as having attention difficulties but, in fact, they will attend and concentrate for long periods when the activity is one they enjoy. However, some children do have attention difficulties and it is important to be alert to this possibility and encourage the development of their attention skills in the ways suggested.

Memory

The development of memory and memory skills is a large research area, with new ideas appearing all the time. It is clear that there are a number of memory systems for remembering different sorts of information but for the present discussion, memory can be divided into long-term and short-term memory. Long-term memory refers to all the information and learned skills that are in long-term store - the usual use of the term memory. Short-term memory refers to the systems that hold information for brief periods, perhaps while carrying out a task like adding up prices in the shop or remembering a telephone number while dialling. This information may or may not move on into long-term memory stores. This short-term memory system is aptly described as working memory by some researchers, as it supports conscious mental processing. Research into the memory skills of children with Down syndrome has focused largely on short-term or working memory. Their long term memories seem to be good, and information and skills are retained once learned. However, their working memory systems do not develop at the expected rate and they have particular difficulty with short term storage of verbal information. This makes learning to talk and processing speech in everyday situations particularly difficult for most children with Down syndrome. However, their ability to process visual and spatial information in short-term memory is better, so that it is important to use pictures and visual information to supplement spoken information, in order to help children with Down syndrome to learn.

The development of working memory skills is explained in full in the module on memory. Working memory capacity increases during childhood and it is probable that children's memory skills can be improved in a number of ways, so memory games become important from 2 years of age in children's play and in early intervention and preschool programmes.

Social development and independence

During the second and third years of life, children develop their social skills as they learn to mix with a wider range of adults and children and to communicate and play with them. It is beneficial for children with Down syndrome have the opportunity to mix in this way and to learn to be able to be part of the group at preschool. This is important preparation for school, and play with other children will help them to learn both socially and cognitively. Most children with Down syndrome are disadvantaged by delayed spoken language which makes communicating with others and joining in play more difficult for them. However, they learn a great deal by watching and imitating - probably because they are not able to learn easily from all the speech going on around them. The spoken language of children with Down syndrome will also benefit from being able to be in a mainstream preschool environment as they will have competent partners and role models in a mainstream setting.

Children's behaviour changes during the toddler period as they learn to control their behaviour and impulses. Often children go through a period of tantrums as they want to be independent and not conform, but by 3 to 4 years, most children have matured through this phase and are learning to self-regulate their behaviour and to follow instructions and requests. They learn more about how to behave as part of a group, to share, to take turns and to follow the instructions of the teachers in preschool, ready for primary school. It is very important that children with Down syndrome learn to behave in a chronologically age-appropriate manner if they are to be able to join in mainstream activities at school and in the community.

Self-help skills and independence

During the preschool years, children become largely independent, able to feed themselves at mealtimes, able to dress and undress with help with fastenings and able to go to the toilet without assistance. It is important that children with Down syndrome achieve these skills before 5 years if possible, so that they can cope in school. The speed with which children become independent in these areas is influenced by the expectations of their parents.