An overview of the development of children with Down syndrome (5-11 years)

development of children with Down syndrome in this modular series, individual modules address social development and behaviour, and motor development, and four cognitive areas - 1) spee[r]

 Abstract and Links

 Introduction

 Development from five to eleven years

 The development of children with Down syndrome

 Meeting the educational and developmental needs of children with Down syndrome

 Health

 Monitoring developmental progress

An overview of the development of children with Down syndrome (5-11 years)

Sue Buckley and Ben Sacks

Children with Down syndrome usually make significant progress during their primary school years

In this module, the goals for their development are discussed in the context of the progress in social,academic and personal independence skills that is seen in typically developing children during the period from 5 to 11 years It is argued that the goals for children with Down syndrome should be age-appropriate and therefore many of the goals should be the same as for other children, although the child with Down syndrome may not achieve quite the same levels of competence in each area This age period begins with settling into full-time school and it is the start of increasing

independence from the family and moving away from the high levels of individual support that preschool children receive, to being able to be part of a group and to cope in the larger social world

of the school and community There is consistent evidence that children with Down syndrome gain significantly from full inclusion in mainstream schools In particular, they show significant gains in spoken language, reading, writing and arithmetic These gains will enhance their adult lives - especially the ability to communicate more effectively However, the special educational needs of the children should be met wherever they are receiving their education and the key needs and appropriate adaptations for teaching and learning are described Children with Down syndrome will benefit from a partnership between parents, teachers and therapists and specific goals are provided for parents, teachers, speech and language therapists and physical therapists, based on the research into the children's specific profile of needs and into effective interventions

Buckley SJ, Sacks B An overview of the development of children with Down syndrome (5-11

years) Down Syndrome Issues and Information 2001

doi:10.3104/9781903806036

Introduction

The aim of this module is to provide an overview of development during the period from five to eleven years and to assist the reader in integrating the material covered in the other DSii modules for this age group These modules each cover specific aspects of development, i.e motor, social andbehavioural, speech and language, working memory, reading and numeracy, and family issues, in detail

This module is intended to help parents, families, teachers, speech and language therapists, and other practitioners who work with children in this age range In the authors' experience, they all

wish to know what developmental and educational progress to expect for a child with Down

syndrome and how to help the child progress as fast as possible

These two main questions are addressed, with a discussion of the wide range of individual

differences in rates of development of children with Down syndrome In order to answer the

question of how to help children to progress, the reasons for their developmental profile are outlined

as far as they are known, as this information should help to identify effective therapy and teaching strategies The question of how to help also leads to a discussion of the importance of balancing family needs with the needs of the child with Down syndrome

In the authors' view, in order to understand the ways in which having Down syndrome affects children's development it is necessary to consider what is known about the development of typicallydeveloping children In the last thirty years, there have been considerable advances in our

understanding of the processes of development, particularly in the areas of social learning,

cognition and language The greater our understanding of typical development, the easier it is to begin to understand the effects of a disabling condition such as Down syndrome on the processes ofdevelopment As we identify the specific effects of Down syndrome on development, we are in a better position to develop effective interventions and teaching strategies

This is the approach taken throughout the DSii modules We draw on research into the development

of typically developing children, the specific research into the development of children with Down syndrome and research that has evaluated effective interventions and teaching strategies, where it exists

The reasons for having age-appropriate expectations for children with Down syndrome

 Inclusion in schools and clubs is with same age peers therefore expectations for social skills and behaviour need to be age-appropriate

 Leisure interests, emotional and social needs tend to be age-appropriate

 Moving through life - secondary school, puberty, further education, work, partners, leaving home - tends to be on the basis of age

 The challenge for parents and teachers is to treat the child in an age-appropriate manner, to respect their age, encourage confidence, independence and self-esteem, and facilitate their inclusion in the community

 The challenge for the child or adult with Down syndrome is to participate in life in an appropriate way, with limited speech, language and cognitive skills for his or her age

age-Age-appropriate goals

In addition to using this information to understand the children's developmental and learning

difficulties, we assess the major developmental achievements of typically developing children over the age span and consider the relevance of these for setting targets for children with Down

syndrome

If individuals with Down syndrome are to be fully included in the community, as children and as adults, it is important to recognise that their place in society will be linked to their chronological age For example, the child with Down syndrome will join a school at 5 years of age in the UK and move through school with his or her peers This means that, despite significant delays in some aspects of development, such as speech and language and motor skills, the child with Down

syndrome needs to be able to cope with the social demands of the classroom, for example, to sit still, follow instructions and learn the school routines Targets for social and behavioural

development therefore need to be appropriate and the task for the child is to manage in an appropriate social world, with limited language and delayed motor skills Similarly, if a child with Down syndrome wishes to join a club such as Brownies or Scouts, he or she will do so at the

age-appropriate chronological age and, again, will need to be able to cope socially

As teenagers, children with Down syndrome reach puberty at the same age as other children As teenagers they develop typical leisure interests and awareness of sexuality.[ 4 ] The point being stressed is that we believe that it is important to recognise that the social and emotional needs of children, teenagers and adults are age-appropriate Their status in the community and their role in life is mainly determined by their chronological age Moving through school to college, work and independent living will happen on the basis of their chronological age

Therefore the goals for education and social development need to be considered within this

framework, and take account of the child's place in society, based on their age In the next section, the developmental achievements for typically developing children from 5 - 11 years are discussed toprovide a baseline for setting targets for children with Down syndrome across this life stage

I Development from five to eleven years

What typically developing children achieve

Between 5 and 11 years, typically developing children make significant progress in all areas of theirdevelopment and we have tried to illustrate the significant changes that take place in Figure 1 There is a wide range of individual differences in achievements in all these areas, with some

children being more socially confident than others, some children making faster academic progress than others and some children having more difficulty with behaviour control than others

Figure 1 An overview of developmental progress from five to eleven years in

typically developing children

Perhaps the biggest challenge for children at the start of this age period is settling into school Children start full-time school at different ages in different countries but most children will be spending part or all of each day in a kindergarten or school class by 5 years of age In the UK, full-time school starts in the year a child reaches their fifth birthday and formal instruction in reading, writing and number begins in that school year (Reception class)

Childhood can be seen as a period of preparation for adult life In preschool years, children are largely sheltered in their family world and parents determine friendships and social experiences Joining full-time school is a big step into the wider community and it provides important

opportunities for children to learn about the wider community, and to mix with a wider variety of children and adults Children's strengths and weaknesses will become more apparent as they leave the support of their families and have to cope in these larger communities If children are going to have some difficulties socially, emotionally or academically, these will become apparent when they meet the challenges of the typical school environment

Going to school - social and academic demands

The classroom environment places demands on children's social skills as well as their language and learning abilities

The children are part of a large group of children in the classroom, and will have to be able to cope socially with a range of different children They have to communicate with one another in the classroom and the playground They are beginning to learn about how to get on with others and how

to make and keep friends These are very important skills for teenage and adult life They will meet children whose behaviour and attitudes are different from their own as they experience a wide range

of children in their community from different backgrounds and social circumstances These

experiences are very important for helping children to develop their social skills

During the preschool years, children will have had quite a high level of individual support for learning in their families but in the full-time school classroom they have to be able to be part of a large group and to follow the teacher's instructions to the whole group They may also have many opportunities for small group work and activities, but they will not be able to have much one-to-onesupport for their learning in most typical school classrooms In their first years in the school system,children are expected to learn to read, write and count, and some will find this easier than others The abilities and the aptitudes of children will begin to become apparent to their parents, teachers and themselves Children will also develop their learning skills and become increasingly

independent learners

Speech and language skills

The school environment places a heavy demand on children's speech, language and communication abilities Most of the classroom and school instruction is through spoken language When typically developing 5 year olds enter school they do not all have the same spoken language skills Some children will be much more competent talkers than others, with larger vocabularies and more advanced grammar and some will be more able listeners than others Some children will have difficulty listening to and remembering all the spoken instructions and information given by their teachers Studies show that children with delayed speech and language for their age have difficulty

in the classroom and tend to fall behind with their academic progress.[ 1 ] Children's language abilitiesand learning abilities are also influenced by their working memory skills Recent research has shown that children with poorer working memory skills when they enter school have difficulty keeping up with the academic work.[ 2 ]

Children's spoken language skills develop a great deal during the period from 5 to 11 years Most typically developing 5 year olds come to school talking in sentences They have several thousand words in their vocabulary and they have mastered most of the grammar of their native language They do learn some more complex and formal grammar during these school years and they learn a great deal of new vocabulary (as many as 3000 new words each year from 7 to 16 years) This progress in vocabulary and grammar has been shown to be influenced by the children's reading progress Children who have reading difficulties, and fall behind their peers on reading progress, do not make typical progress on language or working memory measures Children also develop their

ability to enter into conversations, to initiate conversations with other children and adults and to tell stories or describe events they have taken part in, during this period

Academic progress

During the primary school years, typically developing children are expected to achieve at least a basic level of competence in reading, writing and mathematics Most 5 year olds are beginners, usually starting school unable to read though they may know some sight words and some letter names and sounds, and they may be able to write their name and to count to 20 Most children makesteady progress over the next six years and by the age of 11 years can write and spell well enough torecord classroom work and to write a short story Most will be able to read books for information and for pleasure Most will be able to calculate using numbers at least to one thousand, tell the time and calculate money accurately Most children will be able to weigh and measure adequately for everyday applications Some typically developing children will be more advanced than this, but a significant number of typically developing children (20-25%) will not have achieved these levels by

11 years of age.[ 3 ]

Children will be studying a wide range of subjects on the school curriculum such as science,

geography and history but their literacy skills will influence their progress across all aspects of the curriculum Children will also be enjoying music and creative arts, and these areas, along with sportand music, will not be as influenced by success with literacy Musical and sporting abilities will be developing and some children will discover that they have particular abilities in these areas or in creative arts, including painting, dance and drama

Out of school - social and practical independence

In the years from 5 to 11, children will be experiencing a wider range of leisure and community activities They will be able to join clubs and activities for their age group and they will become more involved in family tasks such as shopping Children will begin to establish a wider range of friendships and visit with friends at their homes to play They will be invited to parties and outings with friends and their families

By the end of this age period, children may be walking to school without parent support and

walking to local shops or to friend's homes They may also be learning to use buses independently

or with friends by 11 years of age They will have watches and be able to tell the time They will know their names and addresses and know what to do if they have a difficulty when out on their own They will be able to use the telephone

At home - personal independence

At home children will begin to take care of their personal needs over this period At 5 most childrenwill still be helped to wash, bath and choose appropriate clothes for the day's activities and weather

By 11 years, most children will be achieving independence in self-care, able to run a bath or shower

at the right temperature, learning to wash their own hair and cut their own finger and toe nails Theywill choose their own clothes They will not yet be expected to do their own laundry, although they may be expected to keep their own rooms clean and tidy

Most 11 year olds can make simple snacks such as toast and hot drinks, using kettles, toasters, microwave ovens and possibly cookers and ovens safely for simple meals Many parents will be beginning to leave children of this age unsupervised at home for short periods and be confident that they know what to do in the event of an emergency i.e they can use the phone and know when to call a neighbour or phone for a doctor, ambulance, fire engine or policeman

In summary

Children progress significantly in all areas of their development during this period from 5 to 11 years and success in these years builds their self-esteem and confidence Conversely, difficulties in any of the areas of progress discussed can have a significant negative effect on any child's

confidence and self-esteem

Children's progress varies widely, even within the range considered to be 'typical development' and these differences will be in part explained by inherited individual differences in abilities and

aptitudes but it will also be powerfully influenced by the family support and educational

opportunities that they receive

Influences on development for all children

Development is not fixed by genes at birth

Development is a process, a dynamic, transactional and social process Most children are born with the potential to make typical developmental progress in all areas of their development, but to do so they have to be able to interact with the world, to move, explore, and to have people around them who talk to them and react to their behaviours At each step, the child has to be able to store the information that he or she is gaining from the world and to be able to practise new skills Later steps

in development are built on earlier ones A child who is placed in a barren orphanage with no toys and little human contact will not sit up, smile or talk at the usual ages At any age, therefore, the development of a particular child, including those with Down syndrome, is the result of an

interaction between that child's biology and innate learning potential and the social and learning opportunities that he or she has experienced It is not fixed in any simple way by genes at birth

Until recently, children with Down syndrome in all countries grew up in situations of social and educational deprivation They were not fully included in the social life of the community In

particular, they were denied the usual opportunities to play with and learn with typically developingchildren They did not receive any education in most countries until the last 30 years, and then the education offered was mainly in special schools and classes, in which all the other children were disabled

If a child with no disability only had this kind of social and educational experience, he or she wouldcertainly not show typical development year on year: he or she would show cognitive and social delay The progress of individuals with Down syndrome over the past 20 years, if they have had good social and educational inclusion, illustrates that the same is true for them Recent studies in Australia, the USA and the UK document these changes The development of children with Down syndrome is as sensitive to the quality of family, social and educational environments as any other child At present, children with Down syndrome are progressing faster and achieving much more than they did 25 years ago.[ 4 , 5 , 6 ]

Influences on development

 Social learning opportunities at home, at school and in the community

 Social support for learning through scaffolding, modelling and teaching

 Self-esteem, curiosity and motivation to learn

 Biology and experience interact to influence brain structure and brain function throughout life

In addition, research on inclusion in education for children with Down syndrome consistently reports significant speech, language and academic gains (reading, writing and number), with these teenagers 2 to 3 years ahead of their peers in special schools in all these areas, based on typical rates

of development [ 7 , 8 , 9 ] These differences are dramatic, since children with Down syndrome usually only make about 6 months progress during one year on these measures They are progressing, but more slowly than typically developing children who are expected to make 12 months progress in a year Measures of expressive language skills of the included teenagers show that their speech intelligibility has improved significantly Eight out of ten included teenagers are intelligible to people they meet in the community, for example in shops or on buses, compared to only four out of ten teenagers in special schools [ 9 ]

Similarly, children with Down syndrome who have been fully included in social activities with typically developing peers have more age-appropriate and socially mature behaviour than those whohave only had social experience with peers with disabilities, at school and in the community

Development is a dynamic, interactive and social process

Further, within a typical social and educational environment, there is much evidence that

development is influenced by the sensitivity and responsiveness of parents and teachers, and by the quality and range of the learning opportunities available to children While parents and carers may not always be aware that they are teaching, they are often engaged in explaining the world to their children as they talk or read to them and scaffolding their learning as they play Scaffolding means supporting a child to succeed at a task that he or she cannot yet complete on their own This is often done when helping children to find out what a new toy or computer game can do, helping them to complete a jigsaw or to count, for example The adult does not take over, they join in with the child,just supporting and demonstrating as necessary when the child is not sure what to do next, so that the child is able to see how to succeed Therefore, learning is socially mediated - that is, children learn in social interactions with more competent others in their world, such as parents, brothers and sisters, grandparents, friends and teachers A child with a learning disability will need more support and scaffolding for their learning and development than a typically developing child

Curiosity, motivation and self-esteem

Children's learning is also influenced by their curiosity and motivation Children are usually active explorers of their world from the first months of life and in their play, they seek to find out what toys can do and explore imaginary roles

As they develop spoken language, children learn by asking as well as investigating Children's learning is influenced by their self-confidence and self-esteem Children who are confident explore and learn faster than those who lack confidence Confidence may be influenced by success but it is also influenced by children's sense of self-esteem (self-worth), which comes from being secure, loved and valued Children's self-esteem influences their social and academic progress in school

Brain and behaviour

While brain development and brain function underpins all that children do, brain development is a highly dynamic and ongoing process from birth to adult life and it is influenced by input and

activity As children learn and develop, so the brain stores that information, and brain structure and function change as new learning takes place This means that intervention should take account of normal developmental milestones and try to ensure that a child who cannot engage in some of the age-appropriate activities independently is being assisted to experience them and helped towards achieving them with support and practice This will ensure that they are at least gaining some of the

brain stimulation that would be typical for their age It is also necessary to be very cautious when interpreting studies of brain structure and function in children and adults with Down syndrome Anyapparent abnormalities described could be the result of the extra chromosome material and the way that it has affected the brain's development but they could also be the result of delayed and differentprogress in learning and mastering new skills

Summary

For all children, including those with Down syndrome, their developmental progress at any age is influenced by their biological make-up and their opportunities to learn and develop throughout theirlives Throughout childhood, much learning is influenced by the social relationships experienced in families and by social learning and educational opportunities with other children and adults outside the family It is also influenced by children's self-confidence and self-esteem Brain development is

a process which continues through life and brain function and structure are influenced by learning and activity

The development of children with Down syndrome

Children with Down syndrome make progress in all areas of development, but usually at a slower pace Some areas of their development are usually more delayed than others, leading many

researchers to now describe a specific profile of strengths and weaknesses.[ 10 , 11 ]

However, before describing this profile in more detail (see 'A specific developmental profile'), it is important to stress that any large group of children with Down syndrome will vary as widely in abilities, behaviour, personality characteristics, size and appearance as any group of 'typically developing' children Their development is influenced by their biology and by their social and learning opportunities, like all other children

The effect of the extra chromosome on the development of babies with Down syndrome is not the same for all the infants For example, nearly half are born with congenital heart defects but the otherhalf have no heart abnormalities, and while some children have bowel abnormalities, most do not It

is clear that the effects on physical development vary, for reasons not yet fully understood, and it can be predicted that the effects on brain development and learning abilities also vary between children Some of the individual differences in rates of progress are therefore due to biological differences at birth Some children with Down syndrome will have a greater degree of disability than others, however good their family care and stimulation, their therapy and school services It is important to stress this point, as many parents wrongly blame themselves when their child makes slow progress

Children with Down syndrome are individuals

Children with Down syndrome are all individuals The conventional stereotypes are inaccurate and unhelpful In physical appearance, they tend to look like their parents and brothers and sisters, just like all other children They do have some physical characteristics as a result of having Down syndrome but they do not all look alike Similarly, children with Down syndrome vary widely in personality, from being extroverted, friendly and sociable to being introverted and shy Some children are mostly calm, while others are anxious Some children are flexible and adaptable, othersfind change difficult and may have a tendency to be obsessional in their behaviours Some children are easy to manage, are happy to be co-operative and to conform at home and in school, while otherchildren are difficult to manage and like to have their own way, or to be in control, at home and at school

Similarly, in all areas of development, children with Down syndrome vary in their progress Some children will be fairly slow to achieve the motor milestones of reaching, sitting and walking while others will show little motor delay, and some children with Down syndrome will have more

difficulty learning to talk than others

The reasons for these differences will be partly influenced by genetic make-up and partly influenced

by the way in which parents, carers and teachers have been able to help the child to adapt to the demands of growing up If a child with Down syndrome is more severely delayed than is typical, it

is particularly important that his or her parents have extra help and support from services and from parent support groups

Each child with Down syndrome is an individual and he or she has the same needs as any other child as well as some specific needs, and it is important that everyone concerned with a child with Down syndrome remembers this It is helpful to know about the specific needs that are usually associated with Down syndrome and these are described in the next section

Additional difficulties

It is also important to remember that a child with Down syndrome may have additional difficulties, like any other child A small number of children with Down syndrome have additional medical complications, like seizures or other illnesses, which may affect their development Similarly, a small number of children have autistic spectrum disorders, attention deficit or hyperactivity

disorder These additional difficulties affect less than 10% of children with Down syndrome but they should be recognised and treated in their own right when they do occur These difficulties are discussed in a little more detail in the 'Children with more severe developmental delays' section

in pain, except by being unhappy and, maybe, irritable or difficult Therefore it is always important

to consider and rule out illness if a child's mood changes, they stop making progress or they are difficult, before assuming they are simply being unco-operative or naughty

Achievements at 5 years of age for children with Down syndrome

Most children with Down syndrome can achieve a number of the same developmental goals at 5 years of age as other children Most five-year-olds are walking, toilet trained, able to feed

themselves and put on at least some of their own clothes

Most 5-year-olds are able to be part of an age-appropriate group and can conform to the main socialexpectations in the classroom They are able to sit at a table, listen to the story and follow the teacher's instruction - with some needing no help to do this and others needing some support Most children can control their own behaviour and are not anti-social They have appropriate perception

of the emotions of others, for example, they are able to understand when others are happy, sad or hurt

Motor skills, social progress and behaviour are strengths However, most 5-year-olds with Down syndrome will have significant delays in spoken language - typically talking in 2 or 3-word phrases,and the words may be difficult to understand Some children will have a knowledge of the early mathematics concepts needed in the classroom, and be starting to count, despite general language delay Some children will be reading a sight word vocabulary and know their letter names and sounds, despite having general language delay

While many children with Down syndrome will have achieved the skills described above, there willalso be many who have not yet reached these and will need help to do so in their first years in full-time school All children move forward through the same steps in each area of development, but some go at a slower pace for a variety of reasons, some of which have already been discussed

In the practical modules for 5-11 year olds the authors have tried to take account of this wide range

of development and some of the targets in the 0-5 modules are repeated in the 5-11 modules to ensure that these cover the needs of most children with Down syndrome as they start school,

whatever their pace of development

Achievements during primary school years

The school curriculum for children with Down syndrome may vary according to their school

placement Children in special education classes or special schools may not receive the same level

of teaching input for literacy and numeracy as the children included in mainstream classrooms Similarly the social demands and the social learning opportunities will not be the same in special education classrooms and schools as in mainstream schools The speech and language learning environment may also be different, if the peer group in special education also have significant speech and language delays

However, the goals for the children with Down syndrome should be the same in all educational settings although they may be more difficult to achieve without the support of a typically

developing peer group.[ 6 , 7 , 8 ]

Figure 2 An overview of developmental progress from five to eleven years in

children with Down syndrome

Social skills and behaviour

Children with Down syndrome should be expected to behave in an age-appropriate and socially acceptable way at home and at school, and they can achieve this regardless of their level of

cognitive and communication skills At 5 years of age, a child should be able to sit still and be quiet

in the classroom, to follow the school and classroom rules for playtimes, lunchtimes and assembly, with some support as necessary but with the same expectations for their behaviour as for the other

children It is particularly important that children with Down syndrome are not 'babied' by other children or by adults This is a very real risk because they are often small for their age and have delayed spoken language, and so seem like younger children

Social development and independence

 Expect and encourage behaviour that is age appropriate for the child's chronological age at

home and at school

 Do not 'spoil' or 'baby' a child with Down syndrome Most children are capable of behaving

in an age-appropriate way Do not underestimate their ability to do so because they tend to

be small and have language delay

Similarly at home, children with Down syndrome should be able to behave appropriately at the meal table and in all family and social situations They should be going to bed at an age-appropriatebedtime and sleeping through the night Their behaviour out in the community, when shopping, going to the park or in church, for example, should be acceptable Their social behaviour with other adults and children should also be socially appropriate

The targets for the development of social skills and behaviour set out in Figure 1 are not unrealistic targets for children with Down syndrome, as is illustrated in Figure 2

While children with Down syndrome should be expected to behave in a chronologically

age-appropriate manner and are capable of doing so, it is still not always easy to achieve these goals with all children Practical advice on achieving age-appropriate behaviour is provided in the social development modules

Speech and language

Speech and language skills should show considerable progress over the period from 5 to 11 years, but as Figure 2 indicates, this is the most significant area of delay for children with Down

syndrome Most 5 year olds will begin to join more words together, although still using keyword phrases, and their speech will become a little more intelligible Most 5 year olds will be using spoken words to communicate and may be using signs as well During the primary years, speech should become the children's main form of communication and they will steadily learn more

vocabulary and more grammar By 11 years, some children will be talking in grammatically correct sentences, with correct word endings and all the little grammatical words in place, while others will still be using keyword sentences and some will still be using only 2, 3 or 4 words together

Almost all children with Down syndrome will understand more than they can say during these years This can be very frustrating and lead to their ability to understand being underestimated

Reading, writing and number

Academic progress will be very variable but all children should receive high quality instruction to progress their reading, writing and number skills from their first year in school Some children with Down syndrome will make rapid progress and be able to write short stories, record class work and read for pleasure at 11 years, while many others will still need full support in the classroom to do this These children may understand the main points of the story or the lesson but may need help to put their words into sentences and to write them down Some children will be able to calculate with numbers to 100 or beyond but some will still be mastering counting with numbers to 20

The important point is that all children progress through the steps of learning to read, write or calculate in the same order, so each child should be making progress through the same stages, but at

different rates Some children with Down syndrome will reach the same levels of competence in reading, writing and number at 16 years or 20 years that other children with Down syndrome reached at 11 years It is the fact of making progress that matters, however slow, and all progress should be praised and encouraged

Motor skills

Progress in motor skills and sports will vary between individuals, according to the interests and aptitudes of the children but will also be much influenced by the opportunities available Children who join dancing, swimming or gymnastics groups, for example, can achieve a high level of

competence Progress in fine motor skills for handwriting and using the computer keyboard for example vary, but are also influenced by practice Some children have significantly more motor skill difficulties than others

Personal independence

Self-help skills and personal independence should progress steadily, at home and at school, and the targets for 11 year olds in Figure 1 will be reached by some children with Down syndrome by 11 years, for example, bathing without help and making tea and toast With appropriate support and encouragement, most children with Down syndrome will largely achieve personal independence during their teenage years

Social independence

Independence in the community will vary Children with Down syndrome who have been educated

in fairly large mainstream schools will have had the opportunity to learn to find their way around a large site, to use the canteen for lunch (involving choices and the use of money) and they may be walking to school with friends, crossing roads or using the bus Children in special education may

be part of much smaller communities (50 to 70 children rather than 300-400 children), with less opportunity to achieve these levels of independence Out of school, children's opportunities will vary according to the resources of the areas in which they live Some children may walk to a local shop or club if they are very close to home, by the time they are 11 years old, but most children with Down syndrome will become more independent in their communities during their teenage years Most children in the 5 to 11 age range will still be fully supervised outside the home

Achievements at 11 years

In summary, many children with Down syndrome will be on the way to independence in personal care, able to choose their own clothes appropriately for the day, wash and bathe with minimum help, make a simple snack, answer the telephone and help with household tasks, but some will still need support for daily activities Many children will be quite socially confident in school and at clubs and only need minimal support to function in these settings However, some children will still need a high level of support with their personal care and in social situations

Many children will be progressing with reading, writing and counting, with some children able to write short stories and record their work in lessons while other children still need full support to do

so Some children will be calculating with numbers to 100 or beyond but some will still be learning

to count with numbers to 20 Children will be progressing with their understanding of time and money at varying rates It is possible for children to benefit from access to the full school

curriculum, differentiated to their needs, whatever their rate of progress, provided that there is adequate support in schools for this to be achieved

Most children will be enjoying music, dance, drama, art and sporting activities and developing their skills at varying rates In these activities, the enthusiasm and creativity of teachers will have

considerable influence on the way in which children with Down syndrome progress Participation inthese activities is not dependent on good speech and language skills and individuals with Down syndrome can often show considerable talent if given the opportunity Mime and dance activities, for example, allow children to express their understanding of emotions and behaviour in a way they cannot do in daily life

Most children with Down syndrome can behave in an age-appropriate and socially acceptable manner, at home, at school and in the community, regardless of their level of ability, if they are expected to do so This is a very important goal, as behaviour influences all aspects of children's lives, and the lives of their families During childhood, difficult behaviour causes stress in the family and reduces children's learning and social opportunities In adult life, a person who can behave in a socially acceptable manner can participate fully in community and social activities In the authors' experience, less cognitively able adults with good social behaviour will be working and leading more fulfilling lives than more cognitively able individuals with poor social behaviour

Typically developing children also show a wide range of rates of progress, due to both different genetic make-ups and to social and educational learning opportunities and the range for some 85-90% of children with Down syndrome is probably due to exactly the same factors However, the development of approximately 10% to 15% of children with Down syndrome is being affected by additional difficulties This group of children show the greatest developmental delays and may be significantly more disabled as adults than the majority of individuals with Down syndrome This is illustrated in Figure 3 The most common reasons for the more severe levels of developmental delayseem to be health issues, autism and attention deficit/hyperactivity disorder

Figure 3 The spectrum of abilities in individuals with Down syndrome

Children with more severe developmental delays

Autism

See also:

 An overview of less typical developmental issues in Down syndrome

It was once thought that Autistic Spectrum Disorders (ASD) were not found in individuals with Down syndrome This is now known to be incorrect, but the incidence of ASD in people with Downsyndrome remains a matter of some debate It has been estimated to affect some 3-7% of children and adults The reason for this uncertainty is that there have been no large scale controlled studies

of this issue and, more importantly, that the diagnosis of ASD is too uncertain to produce reliable data

The diagnosis of ASD is based on obtaining the developmental history of the individual and

information about their behavioural patterns At present there are no objective findings in ASD which are of diagnostic value ASD is a spectrum disorder which covers a very wide range and there are many behavioural features which are associated with this group of conditions However, many of these symptoms are non-specific in that they may be found in a large number of other disorders

Some of the main characteristics of the condition are:-

 A lack of behaviours in which points of interest are shared with others

 Inappropriate social behaviour which is not understood by other people

 Abnormal interpersonal relationships, expressed as the inability to develop intimate,

reciprocal communication with other people

 Language usage which is not only delayed but abnormal in kind

 Rigid, unimaginative style of thinking and behaviour

 Play patterns which are repetitive, show a lack of understanding of the symbolic meaning of toys, and inability to pretend

 Obsessional/repetitive behaviours and preoccupations

A child displaying one of these characteristics, or even two or three, does not necessarily have autism In fact, a number of these characteristics are very common in children with Down

syndrome, reflecting slow development of speech, language and play skills or differences in

temperament For a diagnosis of autism to be appropriate, a majority of these symptoms need to be present

Attention Deficit Hyperactivity Disorder (ADHD)

This condition is sometimes confused with ASD, especially if the child has severe learning

disabilities The level of intrinsic activity and liveliness in children varies enormously and the vast majority of children with Down syndrome are normal boisterous youngsters However, a small number are so overactive that their entire pattern of behaviour is disorganised They are

characterised by their short attention span, impulsiveness, 'silly' social behaviour, clumsiness and constant movement which is little affected by environmental influences The response of children with ADHD to the commonly used medications is interesting because they become calmer and more capable when prescribed drugs which are pharmacological stimulants

The management of this condition consists of a combination of behaviour modification and drugs

If parents and/or carers observe behaviours in a child with Down syndrome which are similar to those described above it is important to obtain a diagnostic assessment from a specialist

paediatrician or a child psychiatrist with experience of children with learning difficulties to find out

if the child has additional problems

Meeting the educational and developmental needs of children with

Down syndrome

During the primary school years, children with Down syndrome usually make significant progress They will start school and benefit from the quality of the teaching and educational environment Their speech and language abilities and motor skills will be the areas of greatest delay and

therefore, they will continue to benefit from speech and language therapy and from occupational and physiotherapy

It is important that parents, teachers and therapists work together as a team if possible, with

professionals recognising that the most important influences on any child's development come from the family and respecting the fact that parents know their child better than anyone else This

partnership will enable children to make optimal progress and help to support families Later in this section, specific goals have been identified for parents and for the key professionals, reflecting theirdifferent roles and expertise Parents tend to be very knowledgeable about Down syndrome by the time their child is five years old

This section begins with an overview of the health needs of children with Down syndrome and theirspecific profile of cognitive and developmental strengths and weaknesses, as an understanding of this profile is essential for planning effective teaching and therapy This leads to a brief discussion

of education research and goals for teachers, followed by goals for speech and language therapists, occupational therapists and physiotherapists The final section discusses family perspectives and provides goals for families

Health and sensory impairments

All developmental progress will be affected by illness or ongoing health problems The common health issues for parents and teachers 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 preschoolersand even mild conductive losses can have a significant effect on the children's development Many school age children with Down syndrome have hearing losses and teachers need to be aware of this.Many children also have visual impairments, and clearly any hearing and visual difficulties will influence progress in the classroom If children have hearing aids, it is important that they are properly maintained and adjusted If children have glasses, they will need to be kept clean during the day

A specific developmental profile

Over the last 15 to 20 years, researchers have made progress in understanding the effects of having Down syndrome on development, though there is still much more to learn in order to fully

understand how to help the children Research has identified a specific profile of developmental strengths and weaknesses.[ 10 , 11 ] This profile is specific to children with Down syndrome, and makes their learning needs different from most other children with similar levels of cognitive abilities However, while this profile is typically associated with Down syndrome, the degree to which any individual with Down syndrome shows this pattern will vary It is helpful as a guide to

understanding any child's developmental needs and learning profile He or she may have all or none

of these characteristics and if he or she does have some, the degree to which they show any strength

or weakness will need to be assessed in order to develop appropriate teaching programmes and therapy

While children with Down syndrome experience some delays in all areas of development, the extent

of the delay is not the same across all areas of development

The specific developmental profile associated with Down syndrome

Children with Down syndrome are all individuals and vary in their rates of progress - however, theytend to have a specific profile of strengths and weaknesses:

 Social development and social learning are strengths - the children enjoy and learn from social interaction with adults and peers

 Motor development is usually delayed and may hold back progress in self-help skills, joining in games, handling equipment and in writing, though the use of gesture to

communicate is a strength

 Speech and language development is usually the children's area of most significant delay - it

is more delayed than non-verbal abilities Most children understand more than they can say and signing is an important bridge to speaking Speech intelligibility is usually a difficulty

A high incidence of hearing difficulties is contributing to speech and language delay

 Working memory development is specifically delayed relative to non-verbal abilities, particularly the verbal short-term memory component - so that learning from listening is difficult for the children Working memory also supports thinking, problem solving and reasoning Visual and spatial processing and memory are relative strengths - so that the children learn effectively from visual information - they can be thought of as visual learners

 Social behaviour- the children have strengths in social skills and in developing

age-appropriate social behaviour, if this is encouraged and expected However, their good social understanding and empathy leads them to pick up on non-verbal emotional cues, such as those for anxiety or disapproval, very quickly They are therefore sensitive to failure and may use behavioural strategies to avoid difficult situations

Social understanding and social interactive skills are a relative strength and less delayed than

speech and language skills Most children with Down syndrome make eye-contact, smile and interact by cooing and babbling from the first months of life, and show little delay in social

interactive skills They are socially sensitive and understand the non-verbal cues to emotions, such

as facial expression, tones of voice and body postures, from the first year of life By school age most children continue to show good empathy and good understanding of social behaviours, but they will not have the language abilities to explain how they feel or to negotiate social situations

Motor skills, including reaching, sitting and walking, are delayed but the main milestones are

steadily achieved and most children become mobile and independent in self-help skills, such as feeding and dressing, which require motor skills By school age gross and fine motor skills will be delayed This will affect taking part in games and physical education It will also affect learning to write The advice of an occupational therapist will be beneficial for most children Fine and gross motor skills will steadily improve with practice, and most children can use the mouse to operate a computer at 5 years of age

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 skills development - and a sporting skill developed in childhood provides

teenagers and adults with increased leisure activities and social opportunities

Speech and language skills are more delayed than the children's non-verbal understanding and

reasoning abilities This is therefore a pattern of specific language impairment Most children with Down syndrome understand more language than they can use as a result of specific speech

production difficulties For this reason, learning to sign will help the majority of children to

communicate, to show their understanding and reduce their frustration Hearing difficulties, usually due to 'glue ear' are common (see 'Hearing disorders' section) and contribute to speech and languagedifficulties

For most children with Down syndrome, the most serious delay that they experience is in learning

to talk This is not only frustrating but it has serious consequences for all other aspects of their social and cognitive development

See also:

 Speech and language development for individuals with Down syndrome - An overview

and

 Speech and language development for children with Down syndrome (5-11 years)

As children learn to talk, each new word that they learn is a new concept or piece of information about their world Once they can string words together, speech becomes a powerful tool for learningand for communicating with everyone in their world, and it also becomes a tool for thinking, remembering and reasoning We carry out these mental activities using silent speech in our minds While we can also use visual imagery to imagine and recall events, reasoning with the use of language is considerably more powerful It follows that a serious delay in learning to understand and to use language will lead to delay in all aspects of mental or cognitive development

Conversely, if we can improve the rate at which children learn language, this should benefit all areas of their social and cognitive development

Children of 5 to 11 years should be receiving regular speech and language therapy targeting

phonology and articulation work as well as vocabulary and grammar development However, learning to talk is a daily activity and is mostly learned with parents 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

See also:

 Memory development for individuals with Down syndrome

Working memory development, particularly verbal short-term memory, seems to be specifically

impaired - again not progressing as fast as would be expected for non-verbal abilities - and this has consequences for the children's ability to learn a spoken language and to process information All teaching in the classroom needs to take account of the children's working memory difficulties

Visual memory and visual processing are relative strengths, while auditory processing and auditory

memory are more impaired This means that children with Down syndrome should be thought of as visual learners and all teaching supported with visual materials

See also:

 Reading and writing for individuals with Down syndrome - An overview and

 Reading and writing for children with Down syndrome (5-11 years)

Reading ability is often a strength from as early as two years of age, perhaps because it builds on

visual memory skills, and reading activities can be used to teach spoken language from this time During the primary school years the teaching of reading should be a daily priority, with teachers aware that reading activities can be designed to improve the children's spoken language Recent research studies have demonstrated that reading activities may be the most effective way to improve

the spoken language of children with Down syndrome and the most effective way to improve their working memories [ 21 , 22 ]

See also:

 Number skills for individuals with Down syndrome - An overview and

 Number skills for children with Down syndrome (5-11 years)

Number seems to be relatively more difficult for children with Down syndrome and their number

skills are often delayed relative to reading skills Current research indicates that for children with Down syndrome, their early number abilities keep up with their non-verbal mental abilities

Teaching materials should make maximum use of visual supports and materials such as Numicon.[ 20 ]

Social behaviour is a strength as children with Down syndrome are less likely to develop difficult

behaviours than other children with similar levels of cognitive delay However, children with Downsyndrome are, as a group, more likely to develop difficult behaviours than non-disabled children of their age

See also:

 Social development for individuals with Down syndrome

 Social development for children with Down syndrome (5-11 years)

Most children with Down syndrome are socially sensitive and understand the non-verbal cues to emotions, such as facial expression, tones of voice and body postures, from the first year of life They can behave appropriately in showing concern, or becoming upset However, this sensitivity can also make the children vulnerable as they will quickly pick up on negative emotions such as anger, dislike or rejection As they are usually not able to explain how they feel, their distress will

be expressed in behaviour Some children with Down syndrome can be quite naughty and difficult

to manage at times, at home or at school, and they may use their understanding of people's

behaviour to be unco-operative and the centre of attention It is always possible to change behaviourand to encourage and teach age appropriate behaviour However, it is not easy to change difficult behaviours that have become habits, and most difficult behaviours can be avoided with calm

routines and good control from infancy

In order to provide detailed overviews of the research and practical advice relevant to the

development of children with Down syndrome in this modular series, individual modules address social development and behaviour, and motor development, and four cognitive areas - 1) speech, language and communication, 2) reading and writing, 3) number and 4) working memory skills This division is somewhat arbitrary and reflects the focus of the team of authors Self-help skills arecovered in social development and behaviour

Education

It can be argued that the most important influence on a child's progress between 5 and 11 years is their school experience and this is equally true for children with Down syndrome Finding the right school place will usually be more difficult for parents of a child with Down syndrome than for parents of typically developing children

Inclusive or special education