Supporting motor development

Summary - In the first five years of life, all children develop a wide range of motor skills. For example, they reach out for toys, move on the floor, sit, crawl, walk, kneel, climb, run and catch balls. They develop the ability to pick up and handle objects, to use a spoon and fork, drink from a cup, play with building toys, threading and screwing toys, to draw, use scissors, manage buttons and zips. For most children, these skills develop naturally through everyday life and play. Children with Down syndrome progress with these skills more slowly and the aim of this book is to explore the reasons for their slower progress and to identify effective ways to help them. This book provides a review of the research into the motor development of children with Down syndrome and into effective interventions. It reports, in some detail, current movement research studies and studies which have evaluated the effectiveness of interventions. Drawing together the evidence from these studies, it identifies the principles on which effective support for children’s motor skills development should be based and concludes with a practical section. This section provides a guide to targets in age bands and many practical ideas for promoting play activities to help children at each stage. Readers are encouraged to read Motor skills development for individuals with Down syndrome - An overview in this series for additional information relevant to this topic.

Introduction

The aim of this book is to provide a guide to the development of motor skills in babies and preschool children with Down syndrome, based on the evidence available at the present time. All the books in this Down Syndrome Issues and Information Education and Development series promote evidence-based practice. This means asking the questions “What do we know about the reasons for delays or differences in the developmental progress of infants with Down syndrome? Does this information suggest that particular types of educational or thera­peutic approaches might be effective in improving their rates of progress and levels of achievement? Do we actually have evidence that current educational or therapeutic approaches are effective?”

The importance of evidence-based practice

In the authors’ view, there are several reasons why a scientific approach is important. Firstly, so that parents and practitioners can actually help children to progress by using methods which have been shown to be effective. Secondly, to ensure that parents do not spend time and money on ineffective therapies. Thirdly, to ensure that the lives of children and their families are not distorted unnecessarily by time given to ineffective therapies, causing stress for parents, diverting time from other children and from ordinary family life.

All children learn and progress through play and exploration as part of every­day family life. When children are involved in early intervention programmes and therapies, this can reduce the time and opportunity for them to play and explore their world in the way that other children do, as well as reducing the opportunities for them to socialise with other children. As professionals, we need to be very confident that the advice that we give parents is supported by evidence and that when we ask them to alter their usual parenting strate­gies, we are really sure that the outcomes will be positive and not negative for the child and family in the long term. Even when we have evidence that a par­ticular therapeutic approach might actually be effective in advancing a child’s progress, we need to consider the demands that this therapy may place on the daily lives of the child and the family and weigh up the positive and negative outcomes.

In this book, therefore, we address four main questions:

  1. At what ages are the main motor milestones typically achieved by infants and preschool children with Down syndrome, and how do we understand the wide range of individual differences in rates of progress?
  2. What does research tell us about the possible reasons for these motor delays and/or difficulties?
  3. Is there any evidence for the effectiveness of current approaches to early intervention and/or other approaches to therapy?
  4. Drawing on the information in the first three sections, can we identify principles that parents and practitioners can apply to encourage motor progress and provide some practical ideas based on these principles? In addition, can we also identify ways to compensate for the effects of motor delays on other areas of development?

Before we address these questions, we consider the range of motor skills that typically developing children achieve in their early years and their significance for all aspects of their cognitive and social development. While it is not essen­tial, we would encourage readers to read the Overview book on motor skills development in this series for a more detailed understanding of motor development in individuals with Down syndrome.

The importance of motor progress for all children

During the period from birth to five years, most children develop a wide range of motor skills. For the first few months of life, babies are totally dependent on their carers and they have very few skills. For typically developing children, independent motor skills begin with the ability to reach and grasp nearby objects at 4 to 5 months of age. During these first few months, head control will be improving and the babies will be beginning to support and turn their heads to follow interesting events in their environment by 5 months. Babies quickly move to rolling, sitting, crawling, standing and walking and they stead­ily improve their ability to pick up and explore objects. They learn to feed them­selves by holding a cup, finger feeding and learning to use a spoon. By five years of age, most children can walk, run and jump, climb stairs, kick a ball, use swings and slides at the park, feed and dress themselves with minimal help and they are learning to use pencils and pens.

During these early years, children are establishing the basic gross and fine motor skills for independence in controlling their bodies, moving around their world, exploring and taking care of themselves. By building on these early basic skills, they will go on to develop more advanced skills for daily life, such as learning to write, use a sharp knife in the kitchen, use scissors to cut paper and to cut finger nails, to pour and carry drinks and to manage all the fastenings on clothes and shoes. They will also learn recreational motor skills for leisure activities, dance, music and sports, depending on their opportunities, abilities and aptitudes. The ability to move and to develop controlled movements influences all aspects of every day life and the foundations for these are established in infancy. Like most of our human abilities, we tend to take our movement abilities for granted as most of us acquired all the basic movement skills without any difficulty or any direct instruction.

Motor skills may influence social and cognitive progress

In the first years of life, infants’ movement skills influence their ability to explore their world and to socialise with those around them and, therefore, delays in motor development may lead to delays in cognitive and social development.

[TODO: references 1] Once babies can reach and grasp, they can begin to explore their physical world by exploring toys and everyday objects with their hands; once they can roll, then crawl and walk, their ability to explore their physical world rapidly increases. In addition, once they are independently mobile, they can follow parents and carers around and become more involved in the social world - observing how people behave in a variety of situations. They will also become exposed to more language as they share in daily activities. A baby or child who is not mobile, but still sitting in one place, may miss out on a range of social learning and language learning opportunities if compared with a child of simi­lar age who is mobile by crawling or walking. Babies and young children with Down syndrome tend to make slower progress in both gross and fine motor skills. This influences the rate at which they gain independence in moving and in self-help skills and, as it may also effect their cognitive and social development, it is important that we explore the reasons for their delayed progress and identify ways in which we may help them to make progress in their motor skills. We also need to consider ways of compen­sating for the effects that their motor delays may be having on their abilities to explore, to learn and to socialise. In the final practical section of this book, both of these issues will be considered: how to improve motor skills and how to compensate for the effects of delayed motor skills on other areas of learning and development.

What are motor skills?

The term ‘motor skills’ covers a wide range of activities and actions and in the books on motor skills in this series we have divided these skills into somewhat arbitrary groups in order to more conveniently discuss therapies and interven­tions later. We have already emphasised that the ability to move is essential to human development, and children develop a remarkable range of motor skills from the first year of life through to adult life. Some are essential to basic human development and others are specialised and optional. For practical purposes, motor skills can be considered under two main headings:

Basic skills include sitting, walking, running, climbing stairs, picking up objects, using cups, knives and forks, pouring drinks, dressing and managing fasten­ings, holding and using pencils, pens, scissors and using keyboards.

Recreational skills include skipping, throwing, catching, hitting and kicking balls, riding a tricycle or a bicycle, swimming, skiing and all sporting activities, playing a musical instrument and playing computer games.

Basic skills are usually further divided into gross motor skills and fine motor skills.

These divisions are somewhat arbitrary and do not imply the use of separate parts of the motor system, as elements of gross motor control such as main­tenance of balance and body posture play a part in carrying out all fine motor activities. However, they provide a useful practical way of dividing the whole range of possible motor skills and they link with the sources of therapy and teaching available to children and parents. Physiotherapists tend to be expert in the development of basic gross motor skills and occupational therapists tend to be experts in fine motor skills, although their skills will often overlap. Recrea­tional skills tend to be taught by teachers, physical education experts, sports coaches and specialists such as music teachers.

We have not included speech-motor skills in this discussion, as the ability to talk, while a motor skill, is ill-understood, and is influenced by the ability to hear and store the sound patterns of words (phonology). Speech is therefore specialised and different, in at least some ways, from other motor skills. Some information on speech-motor development can be found in the speech and language books in this series.

How do motor skills develop? Motor skills are complex

The movements that we perform every day, without any conscious effort, such as walking up the stairs, sitting down on a chair, picking up a cup or brushing our hair, are complex and each activity is the result of the integrated activity of many brain systems. The co-ordination of elaborate motor tasks is highly com­plex and not fully understood.[2-6] Co-ordination is carried out by the brain and, to some extent, the spinal cord.

Two main systems are involved in providing information for the process of con­trolling and coordinating almost all forms of complex motor action.

One type of information, called feedback, (sensory feedback), is utilised towards the end of the particular action to provide the ‘fine tuning’ necessary to com­plete the action in the most satisfactory way. For example, in a task such as grasping a cup, the feedback system continually provides information about the position of the hand, its distance from the cup, the way in which they are both moving, the probable weight of the cup and many other types of informa­tion about the continually changing situation.

The second type of information, called feedforward, is provided from the many appropriate ‘action plans’ or ‘priors’ held in the brain, which are summaries of the accumulated data from the thousands of previous examples of similar tasks which have been carried out.

The ‘action plan’ is triggered into action immediately the brain has decided to carry out the specific action, even though it may not be the most accurate plan for the particular activity at that stage. This is done in order to utilise the time while the feedback system is collecting and processing data. When the feed­back system is more-or-less ‘up to date’, it then becomes the main source of information as the task is being completed. This is because it provides the best information at that stage.

Both the feedforward and feedback systems contain different types and degrees of inaccuracy and, in order to provide the best way of carrying out the particular task, they are combined in such a way as to use the system with the smallest amount of error.

The way in which the summarised plans of many previous similar instructions are combined with other evidence in order to obtain the best outcome is described as a ‘bayesian strategy’, after Thomas Bayes, an 18th century statisti­cian and clergyman.[TODO: references 7]

These ‘action plans’ develop as a kind of summary of the many previous execu­tions (practices) of a particular action and this process can, therefore, be seen to explain why practising a movement refines and improves it.

What are the practical implications?

The implication of what is known about motor control is that the practice of self-initiated movements is essential for progress, as practice enables the brain to refine the control of the basic movements, to improve joint control and to develop strength in muscles. However, experience of self-initiated movement in many different situations is important as each time a baby or child performs any movement, the conditions will be slightly different - each time the infant stands and walks, she or he may start from a different position or move around a different obstacle; similarly each time the infant picks up a toy the precise length of reach or size and weight of the toy will vary. Success with the same basic movement in a variety of different situations provides the brain with a database of information which enables the brain to predict and control the pre­cise movement required more accurately on future occasions.

For more information on movement and a guide to the part played by brain, nerves, muscles, tendons, ligaments, balance and vision, the reader is referred to the Overview book on motor skills development in this series. This pro­vides an illustrated guide to movement and includes further references to the research into typical movement for any reader wishing to explore this literature further.

In summary, we can conclude from research that:

1.The development of all movements is carried out and coordinated by the brain, and will be influenced by its ability to learn, to process information quickly, and to give instructions to the muscles via the peripheral nervous system during movements. 2.Movement abilities are also going to be influenced by the strength of mus­cles, by the quality of visual information available and the ability to main­tain balance. 3.Children’s motor progress is going to be influenced by how active they are. The amount that they move and explore, and the amount of variety and practice they experience in using movements will effect the development of all aspects of their movement skills. Most readers will be familiar with the way in which children’s movements become more controlled as they practice in toddler years (e.g. walking and using a spoon).

We would encourage parents and practitioners to read the section of the Over­view that further explains the components involved in basic movement, as the role of ‘muscle tone’ and ‘lax ligaments’ is often discussed in explaining the delays in children with Down syndrome, while the role of information process­ing and brain control is often ignored. Some understanding of these issues will help when reading the section on research in this book. Before we consider possible causal factors and explanations for the motor delays and difficulties experienced by most infants and children with Down syndrome, let us take a look at the available information on the extent of these delays and difficulties.

Motor development in typically developing children

We have described some of the factors which influence all movements and in this section we consider the way in which motor skills develop during infancy amongst typically developing children.

Motor skills develop in a predictable sequence

There are many studies which have demonstrated that basic gross and fine motor skills usually develop in a specific order and have documented the ages at which children sit, crawl, walk, jump, run, drink from a cup, use a knife to cut or a pen to write letters, manage buttons and zips. Specific gross and fine motor skills are assessed on many developmental tests, and motor skills also influence the scores of infants on some cognitive (mental) tests as they are expected to demonstrate their understanding by picking up or manipulating objects or toys during these tests.

Individual variation

As all parents know, the age at which healthy, typically developing children reach milestones can vary widely with some walking as early as 9 months and some as late as 17 months. This variation is largely thought to be determined by genetic make-up, but it is also affected by the opportunity to move and explore. For example, one Chinese study demonstrated later walking in those children kept in beds or cots for longer periods than usual because of lack of play space.[see 1]

Later skills tend to be built on earlier ones

The early gross motor skills of sitting, standing and walking involve increasingly successful control of body posture and balance, and these will be needed for maintaining body stability when bending to reach an object or later when writ­ing and drawing, and when developing sporting skills.

All motor skills improve over time and with practice

This point has already been made, but it is worth emphasising. All children per­form movements in a ‘clumsy’ or immature way at first and refine their per­formance with practice, over many months or years. For example, for typical children, posture control when walking continues to improve up to at least 7 or 8 years of age.[see 8] Practice improves the smoothness, accuracy and speed of performance and leads to differing degrees of automatisation of most motor functions.[TODO: references 9]

Table 1. Milestones for children with Down syndrome: gross motor skills

GROSS MOTOR SKILLS

ACTIVITY

Children with Down syndrome

Typically developing children

Average age

Range

Average age

Range

Balances head and holds it steady when swayed

5m

3m to 8.5m

Rolls from side to back

5m

3m to 9m

Rolls from stomach to back

6m

5m to 12m

Supports body on arms, lifts head and chest when lying on stomach

6m

3m to 10m

Reaches one arm forward when lying on stomach

6m

5m to 10m

Sits with support

7m

5m to 9m

Hand to foot play

7m

4m to 10m

Rolls from back to stomach

7m

5m to 9m

Rolls over

8m

4m to 12m

5m

2m to 10m

Moves around his/her own axis while sitting on floor

8m

5m to 13m

Sits while supported by own arms

8m

5m to 15m

Sits in high chair

9m

6m to 15m

Sits without support for one minute or more

9m

6m to 16m

7m

5m to 9m

Crawls

14m

9m to 19m

Sits steadily for 10 minutes or more and is well balanced

11m

8.5m to 15.5m

Changes from sitting to standing position

13m

8m to 17m

Crawls with stomach lifted from the floor

14m

10m to 20m

Pulls to stand using furniture

15m

8m to 26m

8m

7m to 12m

Walks with support

16m

6m to 30m

10m

7m to 12m

Stands alone

18m

12m to 38m

11m

9m to 16m

Climbs up a flight of stairs

20m

12m to 28m

Walks 10 feet with a push toy

22m

16m to 30m

Walks alone

23m

13m to 48m

12m

9m to 17m

Walks up stairs with help

30m

20m to 48m

17m

12m to 24m

Walks down stairs with help

36m

24m to 60m+

17m

13m to 24m

Runs

around 4 years

Walks up stairs holding the rail alternating feet

56m

(40m to 66m)

Jumps on the spot

4 to 5 years

Rides a tricycle 15 feet

61m

(50m to 72m)

Walks down stairs holding the rail alternating feet

81m (21m)

(60m to 96m)

Table 2. Milestones for children with Down syndrome: fine motor and adaptive

FINE MOTOR AND ADAPTIVE

ACTIVITY

Children with Down syndrome

Typically developing children

Average age

Range

Average age

Range

Follows object with eyes, in circle

3m

1.5m to 6m

1.5m

1m to 3m

Grasps dangling ring

6m

4m to 11m

4m

2m to 6m

Removes towel from eyes (during play)

8m

5m to 13m

Looks for an object which disappears out of view

8m

5m to 13m

Lets go of one object in order to pick up another

8m

5m to 11m

Passes object from hand to hand

8m

6m to 12m

5.5m

4m to 8m

Feeds self with biscuit

10m

6m to 14m

5m

4m to 10m

Imitates movements

11m

8 to 17m

Shakes rattle to make a sound

11m

8 to 17m

Pulls string to attain toy

11.5m

7m to 17m

7m

5m to 10m

Picks up object from a box

12m

9m to 17m

Finds objects hidden under cloth

13m

9m to 21m

8m

6m to 12m

Uses index finger to explore objects

13m

8m to 22m

Claps hands

13m

9m to 18m

Opens box to find a toy

14m

11m to 17m

Rolls/catches ball

14m

10m to 19m

Makes marks on paper with crayon

14m

10m to 27m

Attempts to imitate a scribble

15.5m

10m to 21m

Puts cube in cup

16.5m

10m to 24m

Puts 3 or more objects into cup or box

19m

12m to 34m

12m

9m to 18m

Drinks from a cup

20m

12m to 30m

12m

9m to 17m

Uses spoon or fork

20m

12m to 36m

13m

8m to 20m

Picks up an object size of a currant using thumb and forefinger only

20m

12m to 36m

Builds a tower of two 1” cubes

20m

14m to 32m

14m

10m to 19m

Puts a peg in pegboard two or more times

23m

17m to 36m

Dresses self partially (not buttons/laces)

4 to 5 years

These milestones have been adapted from: Cunningham, C. (1987). Down’s Syndrome: An Introduction to Parents. London: Souvenir Press. p. 205. Cunningham, C. and Sloper, P. (1978). Helping Your Handicapped Baby. London: Souvenir Press. p. 313. Hanson, M.J. (1987). Teaching the Infant with Down syndrome. Austin, Texas: Pro-Ed. p. 27. Winders, P.C. (1997). Gross motor skills in children with Down syndrome. Bethesda, MD: Woodbine House.

1. How do motor skills develop in infants with Down syndrome?

A number of studies have documented the progress of children with Down syn­drome when they have been involved in early intervention studies and the data in Tables 1 and 2 are compiled from several sources as indicated on page 8.

The list of achievements in these tables is not comprehensive and it does not necessarily include key target skills - it is simply a list of achievements on which we have been able to find data. The tables provide information on the average (mean) age a milestone is reached, based on assessing the progress of groups of children, and the range of ages at which individual children reached the mile­stone. The ranges may be of more practical value and will reassure parents of children who are not achieving particular milestones by the average age.

Motor development is delayed for age

The figures in these tables indicate that, for most children with Down syndrome, both fine and gross motor milestones will be reached at a later chronological age than for most typically developing children. This might be linked to slower progress in other areas of development such as cognition and language, or it might be linked to factors that are specific to motor development. These pos­sibilities, and others, are discussed further in the next section.

Motor skills follow a largely typical sequence

Studies indicate that children with Down syndrome develop their gross and fine motor skills in largely the same sequence as typically developing children. One international study of the fine and gross motor development of 220 chil­dren with Down syndrome assessed on the Bayley Scales of Infant Develop-ment[TODO: references 10] did indicate that some skills might be specifically more delayed relative to other aspects of the children’s motor progress. These were picking up tiny objects, walking backwards, standing on one foot, jumping and walking down­stairs without support. The first requires the child to be able to control the use of finger and thumb together and this precise movement may achieved be later. The later achievement of the remaining gross motor skills fits with the findings of a study[TODO: references 11] of the Canadian children reported below, who also had relatively more difficulty ‘learning to run, walk up and down stairs and jump’. As the authors point out, these skills require more complex motor control for limb co-ordination, speed and balance than is required for standing and walk­ing forward.

A wide range of individual differences

Readers will see that there is a wide range of individual differences in the rate of motor progress of individual children with Down syndrome, with some making much slower progress than others, and it is not possible to explain these differ­ences in any simple way. Some of the reasons for the delayed motor progress of most children with Down syndrome and for the individual differences in rates of progress are discussed in the next section.

Slower progress may not affect final performance

It is important to note that, at present, we do not know whether being a slower starter affects the eventual level of competence achieved in any particular skill. A study of Canadian infants and young children discussed below[TODO: references 11] suggests that, for gross motor skills up to the age of 6 years, the severity of motor impair­ment ‘affected the rate [of progress] but not the upper limit of motor function’.

[11:p.494] Research studies[12,13] and personal experience indicate that, given appro­priate opportunities, motor development for individuals with Down syndrome continues to improve throughout childhood and into adult life. Many adults with Down syndrome can and do considerably improve both fine and gross motor skills when given the opportunity to do so.

The work of Latash and colleagues[14,15] has shown that, with practice, adults with Down syndrome can achieve skills in fine-motor tasks equivalent in speed and accuracy to those of non-disabled adults. The first author’s daughter dra­matically improved her handwriting abilities, her running and her ability to tie shoelaces quickly and competently in her twenties. She did not walk until she was 4 years and 6 months of age and she could not legibly copy her name at 16 years of age. There are several possible factors at work here. It is possible that many children and teenagers are functioning below the levels they could attain because they have not had sufficient practice of motor skills and/or it may be that their nervous systems take much longer to mature and reach peak per­formance. Latash and others[15,16] suggest that motivation may play a part and that, if movements are difficult to carry out successfully, children with Down syndrome may experience frequent failure and, therefore, avoid these move­ments and hence have less practice and experience.

Exploring individual

Table 3: The percentage of children with Down syndrome expected to achieve skills at each age point. differences Adapted with permission from Elsevier [11 p.499]

Milestone

Age (months)

6

12

18

24

30

36

48

60

72

Rolling

51

64

74

83

89

93

97

99

100

Sitting

8

78

99

100

100

100

100

100

100

Crawling

10

19

34

53

71

84

96

99

100

Standing

4

14

40

73

91

98

100

100

100

Walking

1

4

14

40

74

92

99

100

100

Running

1

2

3

5

8

12

25

45

67

Climbing step

0

0

1

1

3

5

18

46

77

Jumping forward

0

0

0

1

2

5

18

52

84

Two useful types of data illustrating the variability of development are provided from a study of 121 children aged 1 month to 6 years involved in a Canadian early intervention programme. [TODO: references 11] The children’s attainment in gross motor function was measured using the Gross Motor Function Measure (GMFM)[TODO: references 17] and the quality of their movements was also assessed.

Rolling - rolls to prone over side from lying supine (on back) Sitting - sits on floor at least 3 seconds, arms free Crawling - crawls reciprocally forward at least 6 feet (1.82 metres) on hands and knees Standing - stands with arms free and no support for at least 3 seconds Walking - walks forward 10 steps with arms free and no support Running - runs 15 feet (2.74 metres), stops, and returns Climbing stairs - walks up at least 2 steps from the base of the stairs, alternating feet, without holding on Jumping - jumps forward at least 2in (5.08cm), both feet simultaneously

All the children in this study showed faster mastery of those skills which are acquired earlier in motor development. The authors suggest that the reason for faster progress with early skills indicates that

Some skills mastered more slowly than others

Of the 121 infants and young children in the study 51 (42%) were classified as having Mild motor impairments, 64 (53%) as Moderate and only 6 (5%) as Severe. Because only 6 children were classified as Severe, the authors combined them with the Moderate group to make comparisons with regard to rates of progress. Their data indicated that the children in the Mild group progress faster than the rest of the children - about 25% faster. However, all the study children eventu­ally reached the gross motor milestones. To quote, the authors state that (the degree of) “motor impairment has a discernable effect on rate of improvement but only a slight effect on ultimate achievement of gross motor function in early childhood”.[11:p.497] All children are walking by 5 years of age.

further, the authors of the Canadian study have rated the characteristics and quality of the children’s movements and classified them as having Mild, Moderate or Severe motor impairment based on the ratings of experienced assessors. The assessors’ ratings represent their overall judgement of muscle tone, strength, range of motion, motor control, efficiency of move­ment and quality of movement. In other words, they are not just considering whether a child has reached a milestone and can, for example, sit or walk, but how they do so. Is the child able to sit with a straight back or do they still tend to be leaning forward with a rounded back? Is the child walking steadily with feet forward and a narrow based gait or with a wide based gait, feet turned out and still rather wobbly? The definitions that they used to categorise the children into Mild, Moderate or Severe motor impairment are given in the box above.

In order to explore this issue of individual differences

Differences in the severity of motor impairments

A more important implication would be that interven­tions should be adapted to the individual needs of the child rather than a specific package offered simply because the child has Down syndrome. The data in Table 3 provide information on the differ­ing rates of progress of children for parents and teach­ers to use to assess the rate of progress of an individual child, that is, to determine whether the child is pro­gressing faster or more slowly than the average child with Down syndrome. The authors of the article sug­gest that specific therapy may only be needed when a child is going more slowly than most other children with Down syndrome.

“children with Down syndrome require more time to learn movements as move­ment complexity increases. The motor control requirements for posture, weight support, muscle force production, and balance increase as children progress from floor mobility to walking, to the ability to perform movements used in play and rec­reation such as running and jumping. During infancy, when GMFM scores improve fastest, children with Down syndrome are developing the ability to sit and move on the floor. Between the ages of 18 months and 3 years, most children with Down syn­drome are learning to stand alone and to walk. The slower improvement in scores during this period may correspond to the increased motor control required to move when standing where the centre of gravity is higher and the base of support smaller and less stable compared to creeping and crawling”.

The authors go on to point out that the slowest improvement was seen between the ages of 3 and 6 years, when most children with Down syndrome are learn­ing to run, walk up and down stairs, and jump. They suggest that this “may reflect the increased motor control required for limb co-ordination, speed and balance”.[11:p.498]

In their discussion of their findings, these authors make three specific obser­vations, which we will return to again later with regard to their relevance for intervention priorities.

Can age of walking be accelerated?

Firstly, they compare their findings for the age at which their children had walked with the data from earlier studies of groups of children with Down syn­drome and found no significant differences in age of walking. The children in their study had received early intervention but the earlier studies provide data on the progress of children before early intervention was available. They sug­gest that this finding may indicate that “early intervention by parents and professionals does not lower the age of walk­ing in children with Down syndrome below constraints imposed by maturation of the nervous or musculoskeletal system”. However, the work of Dale Ulrich and colleagues[TODO: references 18] does indicate that it is pos­sible to accelerate progress to walking by as much as 3 months using tread­mill practice (discussed in detail on page 27), highlighting the need to decide exactly what kind of intervention activities do or do not have an effect.

A focus on playground skills once walking

Secondly, the authors of the Canadian study suggest that there is a need to focus on encouraging running, jumping and stair climbing for the 3 to 6 years olds as these activities are important in playgrounds and will improve the ability to be included socially, as well as affect children’s confidence and self-esteem.

Therapy should be linked to expectations for children with Down syndrome

Thirdly, they suggest that children with Down syndrome whose motor develop­ment is age-appropriate or advanced relative to the expectations for children with Down syndrome, “may successfully achieve motor goals and activities through play and struc­tured developmental activities; ….Conversely, children whose gross motor function is delayed relative to expectations for children with Down syndrome may be less likely to achieve goals without therapy intervention”.

This advice would indicate that at least some 42% of children with Down syn­drome, with Mild motor impairment, will make good motor progress through play and the encouragement to be active like all other children.

In an American study,[TODO: references 19] using a different classification system (based on actual skills the child achieved rather than quality of movement) delays in children’s gross motor skills were rated on a 5 point scale from Mild to Severe (1=Mild, 3=Moderate, 5=Severe). In a group of 27, children 17 (63%) were rated as 1 or 2 - Mild, 6 (22%) were rated as 3 - Moderate, 4 (15%) were rated as 4, and none were rated as 5 - Severe.

This data again highlights the individual differences in motor development for children with Down syndrome and the need to match support and interven­tion to the needs of the individual child. It also emphasises the fact that motor delays may be Mild for about 50% (42% - 60% in these studies) of children, yet many early guides for parents continue to stress the seriousness of motor delays for all children with Down syndrome.

  1. What does research tell us about the possible reasons for these motor delays and/or difficulties?

There is only a limited amount of research into the motor development of infants with Down syndrome and most of it is descriptive rather than explana­tory. The published studies mainly provide information on the rates of progress and describe some differences in the way some infants and young children with Down syndrome move, but do not explain the reasons for these delays and difficulties. In recent years, there have been some experimental studies designed to explore the movement patterns of young children with Down syndrome in more detail but most of these have studied very small numbers, such as 3 or 6 children.[e.g.20,21] Given the wide variability in the rates of progress and degree of motor impairment between individual children with Down syn­drome described in the last section of this book, it is very difficult to interpret the relevance of the findings of these studies. A further difficulty is that some studies only compare children with Down syndrome with typically developing children of the same chronological age. This means that the significance of any differences found cannot be usefully interpreted, since they may simply be due to general developmental delay and slower progress rather than any specific differences in motor development. The differences may disappear if children with Down syndrome are compared with younger children matched for developmental age.

In this section, the authors do not aim to provide a fully comprehensive review of published studies but focus on the published studies that may advance our understanding and/or have some practical relevance. Where possible, we have selected papers that have been published in the last 20 years involving chil­dren who have received early intervention, have sufficient numbers of children to be representative, have an adequate scientific methodology and include a comparison group matched for developmental age. The reader is referred to the motor skills overview book for a more extensive review of the experimental motor research. Most of the experimental research has involved older children and adults with Down syndrome.

A link between mental and motor development

Some studies suggest that, for infants,[TODO: references 22] children[TODO: references 23] and teenagers[12,13] with Down syndrome, motor development progresses at about the same rate as mental development, when progress is measured on standard assessments which sample a range of motor and mental 35 tasks. The similar rates of progress are illustrated in ###### Figure 1. These graphs show 30

the rates of progress of 220 children as

25

assessed on the Mental and Motor Scales of the Bayley Scales of Infant Develop­ment. The graphs are actually based on 707 Mental Age (months) 20 15 10

assessments, as some of the children were assessed at several different ages as part of longitudinal studies. This data is the result of an international collaboration and includes children in Australia, Canada and Germany. It is the largest data set that is available. The papers published on this study do not actually state the statistical correlations between the mental and motor scores of the children and, therefore, we should be cautious about interpreting the similar rates of progress suggested by the graphs. If the 5 0

Figure 1. Mental and motor progress in children with Down syndrome from birth to 5 years (Adapted from [22, p.339] with permission)

rates of progress are similar for each child, we would have graphs like these but if some children have motor skills ahead of mental skills, and a similar number have mental skills ahead of motor skills, then the pooled data would still look the same.

Personal communication with several authors has provided some relevant infor­mation on this issue. Hellgard Rauh, at the University of Potsdam in Germany has shared unpublished data with us on the 202 children in the international study illustrated in the graph. This indicates that some children do show very similar rates of mental and motor development, while others show a little more varia­tion - usually with motor progress slightly behind mental progress between 12 months and about 36-40 months of chronological age, sometimes longer. Her data indicates very high correlations between mental and motor scores on the Bayley Scales (correlations of .93 at 6 months, .81 at 15 months, .78 at 36 months and .79 at 48 months, with a smaller correlation of .54 at 24 months - possibly reflecting late walking).[Rauh - personal communication]

Cliff Cunningham at John Moores University, Liverpool, UK, found Bayley Mental and Motor Scale correlations of .59 at 6 months, .67 at 10 months, .55 at 15 months and .64 at 24 months in his large Manchester cohort of 150 children with Down syndrome.[Cunningham - personal communication] He also pointed out that up to the 15 month level some 60% of the items on the Bayley Mental Scale require motor skills in order to complete them (e.g. to build blocks and to manipulate objects), therefore high correlations would be expected. Gerald Mahoney of Case Western Reserve University, Ohio, USA, found correlations of .71 between the Bayley Mental Age scores and Peabody Motor Age scores for 27 children with Down syndrome at 14 months and a correlation of .53 at 26 months. [Mahoney - personal communication] These are the children in the study of early intervention reviewed on page 23.

Two studies of older children[12,13] do also indicate significant correlations between motor scores and mental scores for children with Down syndrome. The reason for the close association between mental and motor progress over time is not clear and the fact that the two are significantly correlated, i.e. progress at similar rates, does not necessarily imply progress in one area is directly affected by progress in the other. It is also likely that progress in both areas is affected by some common processes, such as speed of information processing in the brain, or the ability to establish learned programmes in the brain.

Link between speech, language and motor impairments

Research with another group of children, those with Specific Speech and Lan­guage Impairment (commonly referred to as SLI) may be relevant to this discus­sion. For many years, researchers have focused on understanding the speech and language difficulties of these children, who typically show speech and language development that is significantly delayed relative to their non-verbal abilities, and assumed their difficulties were exclusively in the domain of speech and language. However, recently, a number of papers have identified that a sig­nificant number of these children do, in fact, have motor delays and difficulties as well, including delayed walking (for a review of this issue see Hill).[TODO: references 24] Hill and others have put forward several possible explanations for the common occur­rence of both language and motor impairments including: a. difficulties in processing information at speed or limits on information processing capacity, b. the possibility of common areas of the brain being important in both language and motor skills,[TODO: references 25] c. underlying immaturity of brain development - neuromaturational delay affecting both language and motor progress.

It may be relevant to note that children with Down syndrome tend to have specific speech and language delays relative to their non-verbal mental abili­ties, as well as motor delays, like children with SLI. Several studies have compared the speech and language profiles of children with SLI and children with Down syndrome and highlighted how similar they actually are.[26,27] One review paper has also noted the motor delays in both groups of children.[TODO: references 28] Explanations being considered for links between language and motor delays in children with SLI need to be considered by researchers exploring these issues for children with Down syndrome.

Information processing abilities and motor control

At the present time, the main reason for including this discussion in this book is to draw the reader’s attention to the overriding role of the brain in motor control - and to the likelihood that much of the delays seen in the motor development of children with Down syndrome are the result of delays in developing the necessary neuromotor control systems.

Relevance at individual level

However, when considering the practical relevance of the evidence that, in studies of large groups, mental abilities and motor abilities seem to progress at about the same rate, caution is needed.

These studies use global measures

In the authors’ practical experience, there is not always a link or correlation between a child’s speech, language and gross motor progress in the preschool years. We see many preschool children with advanced language - good com­prehension at a 2 or 3-word level and using many words to communicate but not yet standing or walking at 30 - 36 months. We also see the converse, early walkers with more delay in language development. We also see infants whose progress in language, cognitive and motor skills do all proceed at a similar pace. It is essential, therefore, that expectations for progress in cognitive and language domains are not influenced by slow early motor skills - and that the delays in exploring and learning that may be caused by slow fine and gross motor progress are compensated for as much as possible by supporting chil­dren’s play and exploration. We will return to this issue with practical advice in the final section of the book.

Both general and specific factors may be important

Both general and specific factors may be important in explaining the rates of progress seen in speech and language and in motor skills. For example, the speech and language progress of children with Down syndrome may be influ­enced by general factors such as information processing abilities, speed of learning, or neuromaturational delay and importantly, it may also be influenced by hearing loss. Similarly, learning to walk may be influenced by general factors such as information processing abilities, speed of learning, or neuromatura­tional delay - it may also be influenced by the amount of movement experi­ence and therefore muscle strength. In other words, each mental or motor skill may depend on shared characteristics of the brain, and nervous system as well as individual characteristics of brain, nervous system and parts of the body spe­cific to each skill.

Physical differences Hypotonia and lax ligaments

To what extent do physical differences explain the pattern of motor delay seen in infants and young children with Down syndrome? In almost every book or chapter on this subject for parents or for professional practitioners, “hypotonia”, described as ‘low muscle tone’ or ‘floppiness’ when in a resting state, and “lax ligaments” are considered as major reasons for motor delay.

Hypotonia

It is difficult to evaluate the role of hypotonia as, in fact, there are no commonly agreed definitions and no objective ways of measuring it. Muscle strength can be objectively measured but not ‘low muscle tone’. The term ‘hypotonia’ seems to have arisen to describe the fact that some (but not all) newborn babies with Down syndrome are more ‘floppy’ than other babies. Like all other babies, babies with Down syndrome become less ‘floppy’ with age, as they increase their abili­ties to move - and the recognised research experts in the motor research field tend to agree that ‘hypotonia’ plays little, if any, part in the movement progress of infants and young children, including those with Down syndrome.[15,21,29] One study has indicated that neither ‘hypotonia’ nor ‘lax liga­ments’ had a measurable effect on movement progress in babies and toddlers.[TODO: references 29]

Lax ligaments

Lax ligaments are considered to make joints unstable when they are expected to bear weight - for example the knee, hip and ankle joints. Certainly, some infants with Down syndrome are able to take up postures not usually seen in typically developing children - especially as a result of being able to abduct the hip joint further to the side of their bodies as illustrated in the photograph on the left.

Importance of appropriate comparisons

However, researchers also agree that the ligaments become less ‘lax’ and joints become more stable over time and one problem with evaluating the role of ‘hypotonia’ or lax ligaments in the motor progress of children with Down syn­drome, is the tendency for most observers to be comparing infants and young children with Down syndrome with typically developing infants and children at the same chronological ages. When the comparisons are with children of the same developmental ages, then differences often disappear.

For example, in one study of infant motor development,[TODO: references 30] the researchers actu­ally measured a number of the physical characteristics of the children including the following range of joint movements - hip flexion, hip abduction, knee flex-ion, ankle plantarflexion, ankle dorsiflexion (see box) and the following body size, weight and fat measures - foot length, crown-heel length, crown-rump length, thigh circumference, umbilicus fold, thigh skinfold, calf skinfold and weight.

Ten infants with Down syndrome, with a mean age of 22 weeks, ten typically developing infants of the same chronological age, and ten typically developing infants at the same stage in their motor development and a mean age of 15 weeks, were included in this study. There was only one significant difference between the infants with Down syndrome and the typically developing infants at the same stage in motor development on the above list of measures and that was that the infants with Down syndrome were able to abduct their hips to a greater degree. On all the other measures, the infants with Down syndrome showed the same physical characteristics as the younger typically developing infants. It might be concluded that their movement abilities were appropriate for their physical size and that their joint characteristics, with the exception of hip abduction, were typical for their stage of motor development and motor experience. It seems that the significance of ‘hypotonia’ and lax ligaments has been repeatedly and wrongly over-emphasised in ‘explaining’ motor progress in children with Down syndrome.

To stress the importance of making developmentally appropriate comparisons, we include a further example drawing on the views of a respected researcher in this field, Esther Thelen.[TODO: references 31] In emphasising the difficulties of children with Down syndrome, their early walking is often characterised as abnormal, with a wide based gait, stiff knees and short steps. Yet these features of walking in children with Down syndrome may just be reflecting the stage of walking that they have reached.

The reader might like to refer to the quote in the box on the right, which describes the progress of typically developing children.

The point being emphasised here is that it is important to compare the movement abilities of children with Down syndrome with typically develop­ing children at the same stage of motor development, rather than the same chronological age, in order to understand their movement delays or difficul­ties. This is not easy to do as, even when a child with Down syndrome can, for example, walk 20 feet or 6 metres, they may not be as active every day as a typical toddler and therefore not getting as much practice in order to improve strength, improve balance and refine co-ordination and control of the movement. In addition, research studies indicate that individuals with Down syndrome need more practice than others to achieve a specified amount of progress (see the overview book on motor skills development).

Weight and fitness

A number of observers suggest that obesity may affect movement progress but evidence is limited and how relevant weight is to the early basic skills learned in infancy is not clear. A study of 30 children with Down syndrome aged 2 years to 11 years and their siblings,[TODO: references 32] has shown that there were no significant differ­ences in body-mass index between children with Down syndrome and their brothers and sisters for this age group. This may be different during adoles­cence. The study also showed that there was no significant difference in calorie intake, although the tendency was for the children with Down syndrome to eat slightly less. The only significant difference was in general activity levels with the children with Down syndrome tending to spend more time in indoor and sedentary activity - the authors point out that this may not be a helpful pattern for teenage or adult years and that inactivity may be important in later weight gain if it occurs. Family factors and family genetics were involved in explain­ing whether children were overweight or not, rather than just having Down syndrome. In an Australian study of teenagers,[12,13] there was no significant link between obesity measures and their progress with motor skills.

Babies with cardiac problems or serious illness

Parents will need to take advice from their medical advisers if their child has a heart abnormality. The progress of infants with serious heart problems may be delayed until they have surgery as they may have less energy, but there will be considerable individual differences. Once infants recover from surgery, their development usually progresses like any other infant with Down syndrome. The small number of children with heart conditions that cannot be corrected may be less able to be active in games and strenuous activities in late child­hood but their progress with the basic fine motor skills and gross motor skills may or may not be affected in early years, depending on the severity of the condition in individual children.

The development of infants with Down syndrome and serious illness such as leukaemia may be affected while they are acutely ill, with sometimes a loss of skills observed by parents, but these are usually regained once the child is well again.

Health and growth issues

Some authors draw attention to a number of medical conditions that are more common in individuals with Down syndrome and which may affect a child’s ability to be active, if not effectively treated.[33-36] These include heart conditions, underactive thyroid function, vision and hearing issues, atlanto-axial disorder and obesity. It will be important to take account of health fac­tors for individual children when considering motor activities but most will not prevent progress in basic gross or fine motor skills. They do not affect neuro-motor co-ordination. Each of these medical conditions will have the same effect on activity levels as they do for the rest of the population. Parents and carers are likely to know about their children’s medical and healthcare needs and will inform teachers and therapists. More information on health issues for children with Down syndrome can be found in each age-specific overview in the DSii series.

Some authors also draw attention to the tendency for indi­viduals with Down syndrome to have small stature and small hands relative to typically developing individuals and suggest that this limits their motor activity. However many, if not most, have similar stature to those at the small end of the general population and the restrictions this imposes on achievements in games and sports will be the same for both groups. One exception may be that in infancy, arms are short in relation to the length of the trunk in many babies with Down syndrome and this may affect the ability to use hands to balance while learning to sit.

Delay or difference?

There are a number of research studies that have observed in detail the way particular movements are carried out in order to further explore the question “Are the movements of infants with Down syndrome delayed or different?” Two basic move­ments have been explored in some detail, the development of the ‘reach and grasp movement’ for picking things up, and the development of walking. Reach and grasp

Experimental studies of reaching and grasping in infants have investigated these movements in detail, comparing the abil­ity of children with Down syndrome with age-matched and developmental-age matched typically developing infants or children.[20,36,37] These studies describe the reaching out and the grasping components of the children’s movements in detail, but are based on small numbers of children.

The evidence seems to support the view that the initial part of the reach movement is more easily mastered by children with Down syndrome than the fine control needed for accurate grasping. Since there are large individual differences in the motor progress of children with Down syndrome, the findings need to be interpreted with caution. Studies of much larger groups of children are needed. In addition, longitudinal studies are needed to see how the whole action improves with time in order to deter­mine whether there are differences in final skilled performance. It is possible that what appears to be a difference in the way a movement is carried out at one stage may be the result of different components taking different times to master. If the visual and sensory feedback needed for the fine control of the grasp element of the movement takes longer to master, then it will appear that the movement is different when compared with motor-age matched children at one stage but may be the same when compared with motor-age matched children at a later stage.

A paper exploring the abilities of toddlers with Down syndrome on a range of tasks some of which required reaching and grasping and eye-hand co-ordina­tion (taking a small ball from a container, putting a necklace in a cup, threading beads, putting a rod in a hole, putting coins in a piggy bank) showed they had more difficulty with these tasks than mental age matched toddlers with other types of developmental delays. The authors suggest that the children with Down syndrome have difficulty in planning and controlling the motor behav­iour for these tasks.[TODO: references 38]

Walking

Experimental studies of walking consider factors such as the extent of joint movement at the knee, step length, stability and balance issues. The studies tend to use very small numbers of children and again are difficult to interpret at present. There are ongoing studies of gait patterns in infants and preschool­ers in Canada at the University of Victoria and the Down Syndrome Research Foundation in Vancouver (www.dsrf.org) and at the Centre for Motor Behav­iour in Down Syndrome at the University of Michigan (http://www.umich. edu/~cmbds/) and information on these can be found on their Web sites - see Resources list. At present, studies of walking, gait and balance in older children suggest that walking steadily improves and is largely delayed rather than dif­ferent, but that balance remains a more specific difficulty for individuals with Down syndrome.

Balance

As already identified, there is some evidence that balance may be a particular difficulty for individuals with Down syndrome. In one experimental study, the balancing abilities of infants with Down syndrome were compared with typi­cally developing infants and the two groups were carefully matched for their ability to stand unsupported.[TODO: references 39] The infants were put into a small room in which the floor was stable but the walls could be moved to give the impression of the room tilting. All the infants reacted as if the floor was also tilting by leaning, swaying, staggering or falling, that is, they reacted as if to stop themselves from falling even though the floor they were standing on did not move. The visual information suggested they were being tilted even though the vestibular and proprioceptive feedback would not have suggested this.

The children with Down syndrome were more affected and made larger pos­tural adjustments than the typically developing children. Both groups of chil­dren improved as they increased their experience of walking and after some 12 months of walking the typically developing children were finally able to stay stable in the tilting room and not react to the false visual cues. The children with Down syndrome needed longer to become stable and did not show complete stability after a year or more of walking experience, even though they were improving. The authors suggest that these findings indicate that children with Down syndrome are more dependent on visual cues to judge body position than typically developing children at the same stage of walking, because they need extra visual information to compensate for less effective vestibular and proprioceptive feedback at this stage. However, they may not be at the same stage of walking, as research with older children and adults with Down syn­drome indicates that they need relatively more practice to improve motor skills and progress at a slower rate. It would be useful to know if, compared at 18-24 months later rather than 12 months, differences still existed.

The effects of experience and practice

However, training studies are needed to properly evaluate the achievable levels of motor skills for children, teenagers and adults with Down syndrome. No comparative experimental studies of motor development in young children have measured the effect of training. They usually compare the performance characteristics of individuals with Down syndrome and typically developing individuals on the same number of trials in the laboratory and then draw their conclusions. However, there is no way of taking into account the amount of practice the individuals have had at the motor skill in question during their lives to this point. Even when individuals with Down syndrome are compared with younger, motor-age matched individuals, it is likely that those with Down syn­drome have not been so active and have actually had less natural experience and practice. One way of tackling this problem is to train those taking part in the studies on the skill being measured until they no longer show improve­ments and then make the comparisons. Some individuals with Down syndrome become very skilled as swimmers, skiers, dancers, and gymnasts, showing that the upper limits of achievement for individuals with Down syndrome are very much higher than is often suggested.

Being able to take into account the effect of practice in research is particularly important, as studies indicate that adolescents and adults with Down syndrome need more practice trials to improve performance than other people (see the overview book on motor skills development).

Is typical development an appropriate comparison?

Some respected researchers in this field such as Mark Latash and colleagues [15,16] argue that it is not appropriate to compare the motor skills of children or adults with their typically developing peers as the differences in their nervous systems and physical make-up can be expected to produce movements that are different in perhaps both characteristics and quality. These researchers argue that the goal should be to help individuals with Down syndrome to become as effective as they can be through a wide variety of experiences and practice, allowing them to develop their motor skills in the way that is best for them and therefore not try to make their movements conform to what is considered ‘normal’ or typical. This view may have some implications for approaches to physical therapies. One problem other experts may have with this approach is the concern that preferred but atypical ways of moving might lead to long term orthopaedic or other problems, although there is no evidence that this is the case. Longitudinal studies are needed to settle this question. In practice, if a child wishes to get around the floor using an unusual movement there is little a parent can do to change this.

Visual learners

Research with adolescents and adults with Down syndrome highlights that they learn motor skills more effectively from watching a person model the action, rather than from verbal instruction.

  1. Is there any evidence for the effectiveness of current approaches to early intervention or therapies?

Effectiveness could be considered in at least two ways; does therapy acceler­ate the attainment of key milestones such as sitting or walking? Does therapy improve the quality of movements and/or prevent later orthopaedic problems? It may surprise parents and some practitioners reading this book to learn that there are very few evaluation studies in the field of physical therapies and those that have been done to not provide much support for their effectiveness.

Is physiotherapy effective?

In many countries, babies and infants with Down syndrome will be offered physiotherapy (physical therapy) to progress their motor development by mainstream health services. The most common approach used in mainstream physiotherapy is the neurodevelopmental approach (NDT) based on the Bobath methods developed in the UK in the 1960s. NDT is the most widely used physio­therapy approach but there is surprisingly little evidence of its effectiveness. In an article reviewing a range of approaches to physiotherapy,[TODO: references 40] a leading expert in this field, Susan Harris, points out that this is true for most of the treatment approaches used by physiotherapists, including the currently popular ‘sensory integration’.[40,41]

In our reading of the literature, it is clear that most of the approaches to physi­otherapy do not have a sound theoretical underpinning, are often based on models that do not reflect current knowledge of neuromotor functions and the development of movement, and have no evidence to support their effective­ness. This may seem a harsh comment, but we are concerned that parents are not misled, particularly when asked to spend time on exercises that the child does not like or that take up considerable amounts of time each day - when encouraging natural play and movement in enjoyable games with the baby may actually be more beneficial.

Experts are in positions of power and responsibility and parents expect them to provide sound advice. In our view, professional groups should be required to objectively evaluate treatments before offering them to children and families. New treatments should be properly evaluated before being offered on a wide­spread basis, but the history of the development of treatments and approaches in therapy and in education fields is that fads and fashions in treatments appear and are promoted, without any evidence of effectiveness. We could go as far as suggesting that this is unethical as well as leading to stress, wasted time and wasted money for individuals and for service providers.

Evaluation is a complex business requiring well-planned comparative stud­ies to demonstrate that a particular therapy is better than no therapy, or that one therapy is better than another. If therapy is shown to accelerate progress in achieving motor milestones or to improve the quality of movement, we still need to know why - what aspects of this approach were responsible for the change - as this will help us to develop the most effective and least time-con­suming therapies, and also to improve them, if they are needed.

Physiotherapy versus no therapy

The only published evaluation of the effectiveness of physiotherapy compared to no therapy with children with Down syndrome that we have found was con­ducted by Susan Harris in 1981.[TODO: references 42] The neurodevelopmental approach was used in the physiotherapy. Two groups of 10 children with Down syndrome aged 2.7 to 21.5 months, matched at the start for Bayley Mental and Motor ages and Pea­body Motor age, took part in the study. One group received NDT physiotherapy and the other group received no specific interventions. The NDT techniques included ‘joint approximations; bouncing and resistance to movements to increase tone; the facilitation of righting, equilibrium and protective responses; and the shaping of appropriate movement patterns such as rolling, recipro­cal creeping (crawling in UK), and moving in and out of sitting position’. Harris reports that the 10 NDT physiotherapy children did show significantly better attainment of some individual treatment objectives and quality of movement but there were no overall differences in the children’s achievements in motor progress as measured by the Mental Scale and Motor Scale of the Bayley Scales of Infant Development or the Peabody Developmental Motor Scales. Treatment objectives were specific targets such as ‘sitting with weight propped on hands for 10 seconds’ or ‘demonstrating forward protective extension when rolled forward on therapy ball 3 out of 4 times’. The infants did achieve the move­ments they were trained in, but this did not lead to gains in overall motor skills as measured on the standard tests. This may be because movements practised in artificial therapy sessions do not become part of a child’s self-initiated move­ments in natural situations, unless the movements are actually practised and encouraged as part of daily play at home.

Early intervention versus physiotherapy

In addition to specific physiotherapy, in many countries children with Down syndrome will be involved in early intervention programmes and parents will be encouraged to engage in games and activities designed to accelerate progress in all areas of development, social, cognitive, language, self-help and motor skills. A number of studies suggest that children who have been in early intervention programmes do benefit but often the groups are small and the comparison studies not well-designed.

One recently published study has compared the outcomes from an early inter­vention approach with the outcomes from a specific physiotherapy approach.

[TODO: references 19] The children in this study by Gerald Mahoney and colleagues were recruited from 9 services in 6 states in the USA and involved 27 children with Down syn­drome and 23 children with cerebral palsy. In 4 of the sites, the practitioners described their approach to motor intervention for the children as neurodevelopmental therapy (NDT) and in the other 5 as a developmental skills approach (DevS) as part of general early intervention services such as those modelled on Portage services. Of the 27 children with Down syndrome included in the study, 11 received the NDT service and 16 received the DevS service. Of the 23 children with cerebral palsy, 17 received the NDT service and 6 the DevS service. The chil­dren received services from the first year of life, at an average age of 6.6 months, and were on average 14 months of age when the research study began. Their progress was then followed for a one year period. The children were assessed on the Bayley Scale of Mental Development and the Peabody Developmen­tal Motor Scales. The Toddler Infant Motor Evaluation (TIME) was also used to assess the quality of the children’s movements before and after intervention. The authors comment that the TIME measures components of movement that correspond to those targeted by the NDT physiotherapy approach. This study was carefully designed and the raters trained to a high degree of reliability in rating the children’s progress. The raters were also ‘blind’ that is they did not know which treatment group the children were in.

The children in the two groups were not significantly different at the start of the study on any of the measures of mental or motor development and the children in both groups ranged from those rated as having mild motor delays to those rated as moderate to severe delays. The researchers collected detailed information on the frequency and style of the interventions - including where they took place, how often, length of sessions, amount of parent involvement and follow up advice provided - and they specifically tested four hypotheses.

They predicted that:

1.Regardless of type of disability or treatment approach, children who received therapy will make significant gains in their rate of motor skill development. 2.Children receiving NDT services will show greater progress in quality of movement than children receiving DevS intervention. 3.Regardless of disability type or treatment approach, children who receive more motor intervention services will make greater gains. 4.Regardless of disability type or treatment approach, children with provid­ers having specialised motor intervention training will make greater gains than children with providers with less specialised training.

Their findings with respect to each of these predictions were: 1. a) the gains for the children in both groups were not greater than could be expected from maturation alone during a year, therefore the first hypoth­esis is not supported. b) there were no significant differences between the two treatment groups in the rate of development the children attained. c) there were no specific additional benefits for either the children with cerebral palsy or the children with Down syndrome from either treatment approach. 2. Children with Down syndrome who received NDT made the same level of improvement during intervention on all measures of quality of move­ment as children who received the DevS intervention, therefore the second hypothesis is not supported. 3.Children who received more motor intervention services - that is, more ses­sions, did show greater gains, for both treatment types, therefore the third hypothesis is supported. Children who received weekly services showed an average of 7 months gain on the motor measures while children receiving sessions every 3 to 4 weeks showed an average gain of 5 months on the motor measures.

However, at an individual level, results also indicated that the children’s rate of development at the start of the study was highly predictive of their rate of development at the end of the study. In other words, those going fastest at the start of the study were showing the fastest progress at the end, and those going slower were still going slower.

4.The differences in the amount of specialised training in motor interven­tion between the staff delivering the services (for example, the difference between a general early interventionist, a trained physiotherapist, or a trained physiotherapist with NDT training) did not make a significant differ­ence to outcomes for the children.

In discussing the one significant finding - that more frequent sessions seemed to produce faster progress regardless of the type of therapy being offered - the researchers interpret this as “related to parents’ commitment and determination to promote their children’s motor capabilities; this determination may have translated into increased motor experiences at home, a factor that contemporary motor theorists believe to be criti­cal for the development of infant locomotion”.[TODO: references 19]

They go on to suggest that this view would be supported by the research on the general effectiveness of early intervention services that indicate that the degree of parent involvement is the key to success in enhancing children’s development.

The results of this study have been described in some detail because they high­light the range of factors which might be important. The results may seem rather negative and to suggest that targeted motor therapies are not really effective in either accelerating children’s motor progress or improving the quality of their movements. However, more frequent contact with a service provider did seem to be associated with rate of progress. The authors of this study have recently published further papers urging those working in early intervention services to address the issues raised in order to develop better services.[43,44]

Another study which supports the importance of parental commitment has been carried out in Spain.[TODO: references 45] In this study 24 infants with Down syndrome who had participated in intervention from 6 months of age were studied and their progress in motor development was measured at 6 months, 1 year and 2 years of age on the Brunet-Lezine Infant Development Scale. The children were divided into 2 groups of 12 children in each, based on ratings of parental involvement in the programme and assessment of children’s home environments using the HOME scale (Home Observation for Measurement of the Environment).

One group were those whose parents were rated as high on involvement in the early intervention programme and the other group those with parents rated as low on involvement. The HOME scores indicated more stimulating home envi­ronments for those with parents in the high involvement group. The children in the two groups did not differ on other factors which might influence progress such as incidence of cardiac defects, birth weight, ratings of muscle tone, num­bers of brothers or sisters or the social-economic status of families. In each group of children, some children were making faster progress than others at the start of the study - and when children were divided into ‘higher’ or ‘lower’ achievers at the start, 8 children in one group and 7 in the other were rated as ‘higher’. The groups, were, therefore very similar at the start.

The rates of progress over the period of the study indicated that the children with more involved parents and more stimulating home environments made significantly better progress than the children with less involved parents and less stimulating home environments. The children’s motor progress in both groups was the same at the start, but at the end the motor progress of the chil­dren with the less involved parents was significantly behind those in the other group. The effect was even seen for the ‘higher’ achieving children - those with the less involved parents and less stimulating homes made slower progress.

Parental involvement is the active ingredient

What these studies may suggest is that it is the extent to which any service can provide ideas and activities to enable parents to encourage their children to be active at home on a daily basis that determines its effectiveness - not the style of therapy. All motor skills require stimulation and practice in order to improve. By stimulation, we mean that babies reach out because they are attracted to something they wish to hold or to move to get a reward such as a noise or movement - they are unlikely to reach out as often if there are no interesting toys within reach. Similarly, they roll, crawl and walk to reach a place, person or toy, therefore we should make sure the environment encourages infants and young children to move. Once an infant begins to try an action such as reaching for a toy, picking up objects, crawling or walking, progress will be influenced by the amount of times each day the infant practices that movement, therefore parents should be encouraging practice. Regular sessions at centres or at home may maintain parents’ motivation to keep up the games and activities and pro­vide the opportunity to celebrate progress and gain practical tips.

Many different therapies which claim to work may, therefore, work not because of the actual therapy on offer but because the sessions and support motivate parents to encourage more activity at home - with the caution that some ther­apies which advocate over-intensive daily therapy programmes at home, such as those based on the Doman-Delcato approach,[TODO: references 46] may reduce the opportuni­ties for the child to develop and practice ordinary functional movements such as reaching, grasping and walking.

We did not find any other intervention studies which specifically involved chil­dren with Down syndrome, but we did find research indicating that Sensory Integration therapy is not effective for children with learning disabilities.[TODO: references 41] Sensory Integration (SI) therapy is still widely offered to children with Down syndrome despite no evidence of benefits. One recent paper does suggest that massage has a positive effect on motor development over and above the effects of physical and occupational therapy in infants with Down syndrome.

[TODO: references 47] This work needs replication but massage is likely to be enjoyable for both baby and mother so may have social and emotional benefits beyond those of promoting physical development.

In evaluating any intervention programmes, there is certainly a need to try to measure the child’s activity levels in the home. Research studies also need to involve parents as active participants and recognise that they are the experts on what works for their child and what works within their daily routines.

In summary, we have some evidence that active parent participation, if it leads to more fun and practice of ordinary motor activities at home, may acceler­ate children’s progress with the caution that individual differences in degree of motor impairment will also play a part and some children will still advance more slowly than others. However, some experimental studies may be beginning to identify more specific activities, beyond general movement stimulation, which will accelerate progress in walking and can be incorporated in daily activities at home and these are discussed next.

Experimental intervention studies Treadmill training to accelerate walking

A team of researchers, lead by Beverley and Dale Ulrich at the University of Michigan, has had an active programme of research into the motor skill development of infants with Down syndrome, including studies that are evaluating interventions, for the past 6 years.[18,29]

They recently published a study showing that treadmill training accelerated the achievement of independent walking by an average of 101 days (14.4 weeks).[TODO: references 18] In this study, the researchers compared the progress of 15 infants who received standard physical therapy services with 15 who engaged in treadmill training in addition to their regular services. The babies joined the study when they could sit independently for 30 seconds. They began the treadmill training when they could take 6 steps per minute on the treadmill and they finished using the tread­mill when they could walk consistently when holding a parent’s hand. Those in the treadmill group practised walking on the treadmill for 8 minutes per day for 5 days a week. Their parents received training to show them how to hold and support their infants. The babies started with only 1 minute sessions followed by rest and this was gradually increased until the 8 minute practice sessions were achieved. When they could walk holding a hand, they continued training until they could walk independently but now the training was not on the tread­mill but walking with help. The researchers have observed that it could often take quite a long time (up to 2 months) for a young child with Down syndrome, who seemed to be ready to walk in the sense of having the balance, strength and co-ordination to walk when holding a hand, to be willing to walk unaided.

Previous research by the same team[TODO: references 48] had demonstrated that babies with Down syndrome, like typically developing babies, begin to take alternating steps when their feet are placed on the moving treadmill. Therefore the tread­mill could be used to provide ‘walking’ practice before the children can stand. When the group means are compared, the infants who received treadmill train­ing pulled to standing 60 days earlier, walked with help 73 days earlier and walked independently 101 days earlier than the comparison group. There was considerable individual variation in rates of achievement within each group. The authors suggest that “the treadmill intervention offered repeated opportunities to improve balance, build strength in the lower extremities, and stimulate the neuronal connections that are involved in the generation of independent walking”.

A second evaluation of this treadmill training programme has confirmed that the training leads to earlier walking.[TODO: references 49]

Longer term effects

The Michigan research team are following the walking progress of the infants from this study in order to evaluate any longer term benefits of the treadmill training and are reporting that the children walk across the room (8-10 steps) with good co-ordination earlier, and display much better walking gait - less outward foot rotation, more narrow foot placement, and longer step strides and lengths. These measures suggest that they are displaying better dynamic balance.[personal communication]

Finding the optimum practice regime

The Michigan team are also studying a further group of infants on the treadmill training programme and investigating the effect that altering some aspects of the training has on progress, such as changing the treadmill speed (from 0.15 metres per second to 0.2 metres per second), changing the time spent in daily practice (from 8 minutes to 10 or 12 minutes for 5 days each week) and apply­ing small ankle weights to the children’s legs - individualised for each child’s calf mass - when they display consistent stepping. The team visit the children at home every two weeks and video the child’s progress on the treadmill, col­lect physical measures, collect measures of each child’s cognitive and motor progress on the Bayley Mental and Motor Scales of Infant Development and provide any advice that parents need. (More details of their ongoing work can be found on their Web site at www.umich.edu/~cmbds/) They have already looked at the effects of varying the surface of the treadmill and the use of Velcro socks.[49,50]

Several papers have now been published comparing the outcomes from more intensive and less intensive training regimes for 30 children with Down syn­drome randomly assigned to two training groups. The High Intensity (HI) group have training individually adjusted to their progress - with increases in treadmill speed and ankle weights - and are compared with a Low intensity Group (LG) who do the treadmill training but without the weights or changes in speed. The HI group walked on average at 19.2 months, slightly earlier than the age reported in the first treadmill study of 20 months. In addition, 94% of children in HI group and 71% of those in LG group walked before 2 years of age compared with 40% reported in the earlier study of children with Down syn­drome already described on page 10.[TODO: references 49]

Follow up studies of the children after the treadmill training ends show that children receiving the HI training have significantly longer stride length and more advanced gait patterns 1-3 months after training.[TODO: references 51] At one year follow up, the HI group show better long term gait, in particular, in average veloc­ity, cadence and double support percentage, and both groups decreased foot rotation asymmetry over time.[TODO: references 52] Both groups improved their walking over obstacles but the HI group walked over obstacles earlier, within 6 months after training.[TODO: references 53] Presumably this work will eventually lead to an optimum specifica­tion for the treadmill and for the training regime.

The importance of activity levels and practice

At two month intervals, they attach activity monitors to the children which record their activity and sleep patterns. They are collecting a very valuable and detailed set of data and they will be able to investigate the relationships between activity levels and achieving milestones such as sitting, crawling on hand and knees (creeping in USA), walking with assistance and independ­ent walking. They will also be able to investigate the effects of joint flexibility, weight gains and body fat measures on both the rate at which milestones are achieved and on children’s activity levels. Activity levels are important as they may provide an indicator of the amount of daily practice a child is engaging in. The team have recorded the added benefit that the HI intervention increased moderate to vigorous physical activity rates during day when off treadmill to a greater extent that the LG intervention.[TODO: references 54] Practice improves gait patterns over time - all groups show an increase in step-width variability and a decrease in step-length variability over time. The HI intervention group showed reduced variability in their walking patterns and showed similar improvement in walk­ing over the first 6 months as typically developing toddlers.[TODO: references 55]

Motor skills are not suddenly achieved - they develop over time as the infant moves and explores. For example, it takes months from the time when the child first manages to sit for 3 seconds, or to walk a step, to reach confident skilled performance of these activities, i.e. sitting for long periods and being able to lean and reach for toys without falling, or walking all around the house and not returning to crawling. The time the child takes to go from the first step to more skilled performance may well be influenced by the amount of practice the child has for that particular skill. Mature walking patterns are not achieved by typically developing children until they are 7-8 years old.[TODO: references 8] Parents will have observed that typically developing infants engage in much self-initiated prac­tice - particularly as they learn to walk. They are also very active in exploring, picking things up and climbing. It is possible that, even when they are begin­ning to master a skill, babies and young children with Down syndrome do not engage in as much self-initiated practice each day as a typical child at the same stage of motor development. This point becomes even more significant when the research on motor skill development across the age-range is considered, as it indicates that individuals with Down syndrome actually need more practice to improve their performance than typically developing individuals (see the overview book on motor skills development in this series).

The researchers feel that one primary value of the treadmill training is that it provides the infants with many opportunities to explore their leg movements in an upright posture long before they are able to pull to stand or to walk. Even­tually all the infants settle into a pattern of stepping which works for them - usually alternating stepping. They believe that the practice of walking on the treadmill helps to develop the motor control needed for walking.

The role of ‘hypotonia’

The Michigan research team do not feel, after more than 6 years of experience of working with infants with Down syndrome, that ‘hypotonia’ is a relevant factor in the children’s progress - that is, it does not explain the delays seen. In a personal communication to the authors, one of the leading researchers, Dale Ulrich, has observed that “as much as we have exercised infants with Down syndrome on treadmills over a longitudinal period, we have not seen changes in tone or joint range of motion”.[D. Ulrich - personal communication] He agrees with the authors of this book and most other experts in this field, that there is no accept­able definition of ‘hypotonia’ or objective way of measuring it - and, while in the resting state the muscles of children with Down syndrome may still seem ‘soft’ if pressed or more ‘floppy’ than those of other children their age, this qual­ity of their muscles has nothing to do with their muscle strength or their ability to develop skilled movements. Despite this fact, it continues to be mentioned in almost every book or article one reads as a significant reason for their motor delays.

Predictors of progress

This work follows from work done on the motor progress of typically developing children by the Michigan research team. In a paper[TODO: references 56] comparing the response of infants with Down syndrome to the treadmill experience, they found that for typically developing children, the frequency with which they extended rather than flexed their hips and knees, in order to maintain straight legs, indicated the time at which they would produce an alternating stepping pattern on the treadmill. However, for the infants with Down syndrome, alternating stepping was not related to leg posture. Long before they showed alternating stepping, they extended their legs when held upright but they needed more time to develop leg strength and hip control before they showed the alternating step­ping on the treadmill.

Adapting to changes and obstacles

In another study[TODO: references 57] of 4 to 6 month old infants with Down syndrome, and a group of typically developing infants at the same stage in their motor develop­ment, therefore younger (3 to 5 months), this research team investigated the abilities of the infants when spontaneously kicking, to adapt their kicking to a weight on one leg. Previous work by the same research team had shown that typically developing infants adjust their kicking to kick as often in the weighted condition as in the unweighted condition, by moving the unweighted leg faster and the weighted leg slower. In this new study, both groups of children adjusted to the weights in this way and the infants were more likely to show the adjusted kicking response as the weights increased. There was a considerable range of individual differences in both groups, with some infants being more sensitive and making the adjustments while others showed less change or no change. The group data for the infants with Down syndrome indicated that they were less sensitive but the individual differences were large, therefore some infants with Down syndrome were as sensitive as some of the typically developing infants - that is, some were just as capable of perceiving and responding to the sensory information. As a group, the infants with Down syndrome only responded to heavier weights, showing no changes to the lighter weights - and some did not yet respond to the heaviest weight. This could mean either, that they are not yet aware of the weight - their sensory feedback systems are not yet registering the information - or that, even though they are aware of the weight, they are not yet able to adjust their leg movements to compensate for the weights. Follow-up data showed that those infants in both groups who did show the ability to adapt effectively to weights in the study were earlier to crawl and to walk.

The importance of infant kicking patterns

The Michigan team of researchers are also studying the patterns of motor development earlier in the first year of life to identify any key activities that may affect the rates of gross motor-development shown by infants. For typi­cally developing babies, they have shown that the time at which babies show alternating kicking predicts when they will walk - those that show this co-ordi­nated kicking, left leg forward then right leg forward - walk earlier. This may just reflect that these babies are those with the good movement skills and that early walkers are also early kickers. However, they have gone on to show, with a randomised controlled study, that if typically developing babies are provided with a toy such as a ‘Playskool Kick Gym’ at 4 months for a 30 day interval, they kick more and go on to walk earlier (the toy rewards the infant with sound and movement when they kick on the bar). They report preliminary findings from a study of infants with Down syndrome suggesting the same benefits - they also increase their kicking with the toy, are able to join the treadmill training at an earlier age and take more steps in their first session than infants not exposed to this kicking practice.[personal communication,57,58]

In another study, which may shed some light on the issue of spontaneous activ­ity levels, this team compared the spontaneous leg movements of 3 groups of infants, 10 infants with Down syndrome, 10 typically developing infants matched for motor age and 10 typically developing infants matched for chron­ological age.[TODO: references 30] They were working from the viewpoint that it is some of the spontaneous movements of babies that lead them to develop the co-ordinated movements needed to attain the typical milestones, and that certain patterned movements will be more important than others for developing muscle strength, joint control and postural control/balance. Therefore we need to know about both the amount of active movement and the types of spontaneous move­ment the infants are engaged in. The study found that the infants with Down syndrome moved as much as both groups of typically developing infants but that they were more likely to produce foot rubbing movements and less likely to produce kicks. The infants in this study were followed until they were walk­ing. For the children with Down syndrome the overall amount of movement in infancy did not correlate with ages of crawling or walking, while the amount of kicking showed small but not statistically significant correlations with crawling and walking - that is, these milestones were reached earlier by those babies who kicked more.

A range of physical characteristics of the children in the study were measured and have already been discussed on page 17. The measures give an indication of joint flexibility for knees, ankles and hips, size of limbs, weight and body fat - all these indicators have been suggested by many authors as influencing the progress of children with Down syndrome; however in this research neither the amount of kicking or the onset of walking were significantly related to any of these physical measures when considered for each group separately. There was a correlation between ankle plantar flexion and the amount of foot rubs that infants in all 3 groups produced at the time of the study. There were significant correlations between hip abduction, knee flexion and both the amount of kick­ing and the onset of walking, if the data for all three groups was combined. The reader is reminded that the measures of all the physical features measured did not differ between the infants with Down syndrome and the motor-age matched group of typically developing children.

This study does not support the often repeated view that babies with Down syndrome are more passive, at least at this stage in their development. How­ever, there is a need for further research to compare self-initiated and goal directed play and exploration as infants with Down syndrome get older. The authors point out that where tasks are difficult or sensory rewards are less, the children with Down syndrome may become less motivated to be active and explore. The longitudinal activity data that they are collecting will provide some evidence on this issue. However, it is probable that children who find moving relatively easy move more and therefore get more practice, and those finding it difficult move less and therefore get less practice. The practical implication of this is that we need to find particularly fun and rewarding ways to encourage movement in those making slower progress.

Early learning abilities

The Michigan team are now investigating the learning abilities of infants with Down syndrome at the stage that we might want to teach them to kick. This follows from the research that they have conducted with typically developing infants[TODO: references 59] which has shown that infants of 3 months of age can learn to make specific leg movements in order to make a mobile move. The mobile rotated and it had wind chimes suspended in the centre to make a noise. The 29 typically developing babies were divided into 2 groups and each group had to make a different specific movement to activate the mobile, one requiring extension of the leg at the knee (straightening leg) and the other flexion (bending leg). Eight out of 13 babies learned the task in the flexion group and 10 out of 16 in the extension group. In the flexion group some babies used a movement-based strategy - kicking actively as this would result in the correct flexion phase being achieved and this strategy increased their overall kicking frequency, others used a posture based strategy - keeping the leg relatively still in the approxi­mate flexed position and just making small adjustments to achieve the right angle at the knee to move the mobile.

These individual differences are important and illustrate that the infants were able to develop different solutions for the same problem even at this young age. In the extension group only one movement-based strategy was seen. The research team is now investigating the ability of infants with Down syndrome to learn to develop specific movements and their ability to remember this learn­ing over time and the effects of practice on the quality and quantity of move­ments. More information on all the work of this team can be found by visiting their web site at www.umich.edu/~cmbds

This work is particularly interesting as it will give a measure of the children’s ability to develop learned neuro-motor patterns. Since we have stressed that it is this neuro-motor learning in the central nervous system that underlies improved motor co-ordination, this work will provide potentially very impor­tant information on this learning in the first year of life.

The use of artificial supports

The final issue which we should consider is the effectiveness of using foot, leg, or ankle supports (technically known as orthoses). These are frequently sug­gested for children with Down syndrome by physiotherapists and range from arch supports in shoes, to specially made shoes with ankle support and leg sup­ports. We were only able to find one research paper which attempted to evalu­ate the effectiveness of a foot support for children with Down syndrome.[TODO: references 60] This study compared the standing, walking, running and jumping performance of 17 children with Down syndrome in their ordinary shoes and with a foot sup­port placed over the shoes at the time of fitting and 3 weeks and 10 weeks after fitting. The study reported improved performance and postural stability of the children when wearing the foot support and more progress with the support over time than with shoes only. However, the children were expected to wear the support for 8 hours each day and this may have affected the way in which they were able to perform in their shoes only, over the weeks. Once they were used to the foot support over their shoes they may have been less confident when walking in their shoes without the support. We would suggest that the real outcome test to demonstrate the benefit of supports is that they must be shown to actually accelerate the development of natural and independent skilled movements for the child - that is movement once the support is removed. The development of strength in muscles and ligaments and the development of the neuromotor control for natural move­ment may actually be delayed by supports even though the child appears to be moving ‘better’ when wearing the artificial support. In summary

The review of research studies indicate that there is no evidence to support the use of some common physiotherapy programmes for children with Down syndrome. However, there is evidence to support the view that active practice of everyday movements accelerates progress and active parent involvement in movement programmes. There is also evidence from the Michigan team’s work that it is possible to design activities to increase the amount of practice of everyday movements that children can experience - for example, treadmill walking or kicking.

  1. Can we identify the general principles for effective intervention? What have we learned from our review?

The review of existing research and development has shown that: - Children with Down syndrome develop their motor skills more slowly, but in the same order as other children. - For most children, motor skills show a pattern of delay rather than differ­ence, and they steadily improve with age and practice.

development than most, may need special help to progress. However, for most children, active movement and play is the way to help them achieve motor skills. - The control, co-ordination and strength needed for moving skilfully is only gained from actually practising the movement required. The main action is in the brain - the brain controls all movement and the brain needs many experiences of self-initiated movement in order to develop better and better control of movements. At the same time, while practising move­ments, muscle strength, postural control and balance develop. - The key to progress is providing a baby or child with as many opportuni­ties as possible to move and to try all the range of movements needed for everyday living.

activities to encourage balance will be important. - Babies and toddlers with Down syndrome may need more practice than other children to progress.

Some ideas for activities Our approach here is to identify the main developmental goals reached in each stage and give some ideas on how to encourage children to reach them. We have used age bands as a rough guide because we wish to try to offer our babies and children with Down syndrome some of the cognitive, language and social learning experiences that they should have at each stage through handling toys and objects and through all kinds of movements. We want to encourage independent movement skills to develop at each child’s pace, but we also want to compensate for the learning experiences that they may be able to benefit from but are missing through delay in motor skills. A couple of general points which apply at all ages Children need play partners - all children learn in play with other children or adults. These play partners show children what they can do with toys and, by playing together, the child and partner engage in more advanced play. Eventu­ally the child learns from joining in and from copying to develop more advanced play when playing alone. All play and activities should be fun and designed to encourage success. This may seem an obvious point but, as parents and teachers of children with developmental delays, we can become over concerned about our children’s progress and maybe a little over-earnest or over-anxious for them to succeed. This can lead to us turning what should be fun play activities into lessons. As parents and carers, we need to be patient - many children with Down syndrome become very competent in movement skills over time - it takes them longer but they get there in the end. Therefore, we need to be sure we are all having fun together and that we try to structure success by breaking down the activity into small enough steps to allow the child to succeed.

Goals and activities: Birth to 6 months In the first few months, the main goals for babies are 1.to develop head control

2.to move limbs when undressed and when in the bath

3.to begin to roll to back when on side

4.to begin to kick with legs when on back

5.to watch the people, animals, toys and objects in their world

6.to begin to reach for toys and to raise shoulders and head when on tummy

7.to reach out to pick up and hold toys when in sitting position

8.to progress towards sitting unaided

You can help by

Goals and activities: 6 to 12 months 1.to continue to improve head control and to turn head to follow people, objects and sounds

2.to roll from back to tummy and tummy to back

3.to kick vigorously and to use a ‘kicking toy’ to get an action

4.to improve reaching out and raising head and shoulders when on tummy

5.to begin to turn and to move across the floor on tummy to reach toys

6.to sit unsupported and with increasing stability

7.to look at and play with hands and feet

8.to reach for toys at side or in front while sitting without falling over

9.to move from sitting to tummy while playing and reaching for toys

10.to pick up toys and objects in either hand and put them in mouth to explore them

11.to pass toys from hand to hand

12.to play with simple ‘cause and effect’ toys - shake to get a noise, post balls to roll through a toy, press ‘easy’ button to get a reaction

13.begin to hold bottle and feeding cup

14.begin to hold spoon in play

15.to roll a ball to a partner and to catch a rolled ball

You can help by - Continuing with much of the advice for the first months. - Spending more time on the floor with your baby as they spends more time awake.

Goals and activities: 1 to 2 years

1.to increase the range of movement when lying on the floor, rolling over, twisting and turning on tummy to reach things

2.to learn to crawl on hands and knees, though not all children will crawl

3.to move from lying to sitting unaided

4.to sit with a straighter back, better balance and more control, so able to reach all around without falling

5.to kneel with straight back to play or to reach

6.to stand with support

7.to pull up to stand

8.to cruise around the furniture

9.to push a truck or walker

  1. to walk held by one hand

  2. to walk a few steps and then longer distances independently

  3. to climb onto and off chairs and sofas with help

  4. to climb stairs on hands and knees with supervision

  5. to pick up and explore toys, to post toys in large holes

  6. to pick up smaller items and to finger feed

  7. to hold and drink from a two-handled cup

  8. to use a spoon

  9. to learn to point with index finger

  10. to turn the pages in a book

  11. to pick up, put down and turn over picture cards

  12. to begin to catch a soft, medium sized ball with arms and hands together hands

  13. to begin to use a brush for hair and for teeth and a flannel for washing - and to practise on dolly or teddy

How you can help - Again, much of the advice we have already offered still applies but now the big task is to progress towards standing and walking, therefore, activities to help your child experience being on their feet are important in order to help him or her to develop strength, co-ordination and balance. - You could follow the treadmill programme described on page 27 if you have access to a suitable treadmill (one that goes at the slow speed needed, and many adult treadmills will do this) see details on Web site at www.umich. edu/~cmbds/ - Helping your child to pull to stand at sofa - removing the seat cushions may help to provide support at the right height and try placing interesting toys an arms length onto the sofa. - Some toys encourage standing such as play tables, and some ‘ball run’ toys.

Goals and activities: 2 to 3 years 1.to progress to walking independently

2.to improve balance over the year so that walking becomes more confident and tumbles are less frequent

2.to develop walking so that feet are closer together and gait more stable over the year

3.to begin to climb up and down stairs with supervision, holding hand or rail and putting 2 feet on each stair

4.to kneel and to squat with increasing control

  1. to climb on and off beds and chairs without falling 5.to climb at the playground and use small slides, swings and play equip­ment

6.to increase ability to catch and to kick a ball

7.to improve the use of spoons, forks and cups

8.to take off some clothes

9.to continue to develop washing self with soap and flannel or sponge, to wash hands and to brush hair and teeth

10.to continue to develop finger and hand control in order to pick up small objects, play with smaller components in toys, build with blocks, do simple puzzles with inset pieces, turn the pages of books, pick up picture cards and scribble/draw

You can help by

Goals and activities: 3 to 5 years 1.some children will still not yet be walking on their own and they may ben­efit from using a ‘rollator’ to give them independence and walking practice. This will be provide by your physiotherapist. 2.to continue to improve walking gait and control 3.to steadily improve running ability - fewer tumbles and ability to take curbs and steps without falling 4.to use an increasing range of playground toys, climbing frames, swings 5.to use ride-on toys which can be pushed with feet on the ground and pro­gressing to using pedals on trikes or toy cars 6.to continue to improve catching, throwing and kicking skills with a range of balls, differing in size and weight 7.to play games such as skittles 8.to play simple bat and racquet games which require hitting a ball or shuttle cock 9.to learn to jump - two feet together from a step and then from the ground 10.to continue to develop control of spoons, forks and knives for eating 11.to continue to develop the use of cups and glasses without lids 12.to continue to improve colouring, painting and drawing skills 13.to continue to develop fine motor skills in play, building with smaller Lego and construction toys - using toy screwdrivers, threading activities, jigsaws with smaller pieces 14. to learn to use a computer mouse

How you can help

In conclusion A positive long-term view

Children with Down syndrome make a slower start with movement than many other children, but most do well in the end. Most children become largely inde­pendent and by five years of age will be walking, running and playing in the playground - able to use some playground apparatus and play ball games, maybe more at the level of skill of a child a little younger, but making steady progress. They are able to feed themselves using a spoon and fork, help with dressing and undressing and most are toilet-trained. They will be beginning to write. They will be playing with a range of toys and developing hand strength and manipulation skills for threading, cutting and twisting or turning toys. They will go on to steadily improve their movement skills during their primary and teenage years.

Like all children, children with Down syndrome vary widely in their enthusiasm and aptitude for sports. They also vary widely in the rate at which they progress with basic skills as our research reviews indicate. However, many young people become very competent at sporting activities including gymnastics, swimming, dancing, skiing and running - achieving levels as good as many young people without disabilities. Therefore, parents, therapists and educators should aim high - and recognise the importance of joining sports clubs early. Some young people have musical talents - playing the piano or other instruments - again it may help to start early.

We have stressed the benefits of an active life-style for motor skills develop­ment but it is also important to note that most sporting activities and dance or drama activities are social and provide friendship opportunities. One benefit of encouraging children to enjoy a sport or leisure activity as a toddler and there­fore develop their skills in a sport or dance activity, for example, is that this will give them a leisure interest and friendship opportunities for life - with access to friends with similar disabilities and to non-disabled peers. The main message is, whether you are a parent, therapist or a teacher, that the way to help babies and toddlers with Down syndrome to develop their motor skills and motor co-ordination is to enjoy a wide range of everyday activities and to have fun together.

Resources

Recommended as a practical guides to everyday play activities:

Sarah Newman (2008). Small Steps Forward. 2nd Edition. Jessica Kingsley Publishers London: UK. Sue Schwartz (2004). The New Language of Toys. 3rd Edition. Woodbine House: USA. These books are full of practical play ideas that will appeal to busy parents. Both have sections on motor skills or physical development as well as sections on all other aspects of children’s development. They identify how everyday activities and play are all helping children to develop and then how we can be more aware, as parents, of using and developing these further for our children. The resources listed reflect the country of publication.

Recommended if you would like more specific detail and pictures of movements:

Patricia Winders (1997). Gross Motor Skills in Children with Down Syndrome. 1st Edition. Woodbine House: USA. Maryanne Bruni (2006). Fine Motor Skills in Children with Down Syndrome. 2nd Edition. Woodbine House: USA. These books focus in more detail on motor skills. Both are well written and fully illustrated. The gross motor book contains many photographs showing how children develop each stage of moving and this will be a great asset if you would like this level of detail.

Recommended Web sites:

www.umich.edu/~cmbds/ Center for Motor Behavior in Down Syndrome, University of Michigan, USA. www.earlysupport.org.uk/ Early Support. This site promotes effective early support and early intervention ser­vices that put parents and families at the heart. There are many useful resources including materials specifically on Down syndrome. These are free in printed form if you live in England and downloadable for anyone from the web site. The Developmental Journal for Babies and Young Children with Down syndrome is a parent held record allowing parents to celebrate their child’s achievements and to support team working with professionals. The Journal and an Information for Parents: Down syndrome booklet can be found by going to the Materials page of this site. The Journal provides a resource for recording a child’s motor development from birth to 5 years. as well as communication, cognition and play, social-emotional and self-help development. www.downsed.org Down Syndrome Education International Resources including Development in practice - Activities for babies with Down syndrome (DVD). This DVD has some practical advice on early movement for babies.

References

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