What do we know about the effects of interventions and therapies?

Interventions for basic skills

There are very few evaluations of therapy aimed at improving or accelerating the development of basic skills for children with Down syndrome.^[1] Some early intervention programmes which target all aspects of development indicate gains in motor development with milestones reached earlier.[TODO: 33] This may be because babies are encouraged to be more active and interested in their environment, and encouraged to play and to move.

Physiotherapy

A recent systematic review of physiotherapy programmes reports gains in balance, muscle strength and flexibility [TODO: chk as suggests benefits over 8 years?] Another recent study evaluated a very specific therapy to encourage walking by supporting infants with Down syndrome to walk on a treadmill for up to 8 minutes a day from the time that they could sit without support.[TODO: 38]

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.

Walking

The treadmill infants walked on average 101 days earlier than a comparison group, presumably as a result of this increased practice. Being able to practise walking while supported upright on the treadmill presumably gave the infants the opportunity to increase muscle strength and to develop their balance. The practice may also have helped them to develop a neuromotor programme for walking.

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.

We found no evaluations of the adaptations and advice offered to improve gross or fine motor skills for children with Down syndrome. [TODO: Fine motor intervention A?] However, many practical aids such as the appropriate size of chair and table, special grips for spoons, pens and pencils, and spring loaded scissors may be helpful in giving a child improved opportunities to practise. In addition, many practical programmes provide ideas for activities which will encourage a child to practise.

Activities designed to increase muscle strength of the whole body and of the hands are likely to be beneficial, as are activities that will improve balance such as walking on a beam (at ground level), hopping, and playing football.

This lack of research evidence does not, of course, mean that babies and children with Down syndrome do not necessarily benefit from the recommendations given in books of practical advice - we do not know because the studies have not been done. However, the benefits are likely to be mainly the result of providing games and activities which encourage and increase active movement therefore increasing the child’s amount of practice. Practice allows the central nervous system to develop more effective neuromotor programmes for smoother and more coordinated movement.

Interventions for recreational skills

We also found no data on the numbers of teenagers or adults with Down syndrome who become competent in recreational skills, or any studies documenting the effects of teaching such skills to a representative group. There are a few studies indicating both improvement in performance, and in strength and fitness, from athletics training^[2] and fitness training [TODO: 42] programmes similar to those offered to typically developing children and adults.[TODO: Add here soccer study etc and wii etc… ] There are a number of articles and chapters encouraging educators to improve the opportunities for children, teenagers and adults to enjoy a wide range of sporting and recreational activities and identifying the social and health benefits. We would entirely agree with this advice, as it applies to everyone, but we would benefit from more information on successful programmes and some actual measurement of the benefits.

Preventing abnormalities

Some physiotherapists suggest that the main aim of therapy in infancy is to prevent abnormal postures and gait^[3] which may be the result of lax ligaments, such as widely splayed hips when sitting, a wide based gait or turning the feet out when walking. However, some of the most knowledgeable current researchers in the area argue that ‘abnormalities’ in the way movements are carried out may be necessary adaptations at particular stages, for example, to enable children to maintain their balance.[TODO: 5],[TODO: 17] They argue that the movement seen may be the most effective adaptation the child or adult can make at a particular stage of development and that we should not be trying to push them towards ‘normal’ postures and styles of movement.

One concern we have is that therapy may not always seem to take account of the child’s developmental stage - the child with Down syndrome may be showing immature styles of movement that are seen in younger children when they begin to use the same movements. In addition, because children with Down syndrome progress more slowly, they may use immature styles for longer and need more practice to improve and gain better control and coordination.

We also have concerns about supportive aids that restrict movement, as they may prevent the child from being able to control the restricted joint and muscles.[TODO: Add ulrich study ] This prevents the practice of effective control of the movement and it will prevent gains in muscle strength. However, at the same time, we do not know if any lasting harm comes from continuing to use ‘abnormal’ movements, such as crab crawling with the knees out sideways to the body and hips rotated. It has been suggested that this may lead to long term damage of hip joints but no one actually knows if this is true as there are no long term follow up studies. The body is a dynamic and flexible system and it is quite possible that no harm comes from these actions in the long term.

In summary

It seems that we have no real evidence that interventions other than encouraging and increasing the opportunities for active movement influence motor progress.

4. Implications for effective intervention

Research studies at the present time indicate that motor development is essentially delayed in children with Down syndrome and generally proceeds at a similar pace to their mental development. This may indicate that they take longer to manage the information processing demands of controlled movement and to establish learned neuromotor programmes for movement.

There are two main implications of these findings:

1. The most effective way to develop any controlled movement is to actually practise the movement.
2. More practice will be needed to improve movements.

Some experts suggest that individuals with Down syndrome may actually avoid practising some motor skills, if they fear that they will have difficulty. This might particularly apply to activities which involve movement and balance, such as running, jumping, trampolining or balancing on a beam, but it could also apply to everyday tasks, such as carrying a cup full of liquid or a plate of food, pouring out drinks, or trying to fasten coats and shoes.

One author^[4] emphasises the need to encourage the practice of movements in varying conditions, to encourage individuals to reach optimal levels of skill. Examples of this approach could be encouraging walking or running on hard surfaces, grass, sand, pebbles or foam mats, encouraging games with different size balls to catch or to kick, and encouraging the practice of pouring with jugs or containers and cups of different sizes.

In addition, research studies indicate that balance may be a specific difficulty relative to progress in other aspects of movement skills. This suggests that:

• practising activities requiring balance will be beneficial.

Some studies suggest that low muscle strength may also delay progress although strength may, in fact, be appropriate when developmental age is taken into account. However:

• specific exercises to improve muscle strength may be beneficial, although all physical activities will increase strength to some degree.

Studies also suggest that children and adults with Down syndrome are visual learners, therefore:

• remember to demonstrate or model all activities.

In the next section, we offer some key guidelines for developing both basic and recreational skills. More detailed advice and suggestions for activities are contained in the age-specific practical motor skills books in this series.

Developing basic skills

Encourage active movement

Since the most important factor in improving movement is the control from the brain, it is important to find fun ways to encourage infants and children to initiate their own movements. This applies to babies and toddlers when learning all the basic skills such as rolling, reaching, grasping, sitting, standing, walking and feeding. All babies learn through play, and play provides many opportunities to develop and improve gross and fine motor skills.

Encourage practice

Fun activities need to be encouraged as often as possible to give the child practice. Some activities, such as walking, may need support. When babies bounce on their parents’ knees, they are strengthening their legs with the help of support before they can stand. Gaining balance and posture control for walking seems to take quite a while, and practice in walking with a truck to push or supervised practice for short periods in a baby-walker may be beneficial. Baby bouncers will also strengthen the legs if used for brief, supervised sessions. We know that many professionals advise against these aids, but if they are used wisely they can increase the child’s opportunity to practise walking, as the treadmill study did.

Choose activities to help balance and strength

All active movement will improve balance and strength, but it is also possible to think of particular activities to target one or the other. Supervised trampolining will improve balance and strength, for example, as will skipping, hopping, jumping and kicking a ball. Hand gym exercises (e.g. squeezing balls of different textures or moulding playdoh) will improve hand strength.

Teach by modelling

Movement research indicates that it is more effective to teach children with Down syndrome by modelling (visually demonstrating) the activity than by giving verbal instructions alone. This suggests that children will learn more effectively by being able to imitate or copy actions. They have strengths as visual learners in all areas of their development.

Encourage fine motor skills

It is important to encourage all fine motor skills - initially through play, feeding and dressing. In later childhood, encourage mastery of skills useful in the kitchen such as pouring, cutting, and spreading, and personal care skills such as managing fastenings, including laces, and using scissors or clippers for cutting nails.

! Karen Gaffney in centre

Karen Gaffney in centre

! Sarah Duffen, 4th from right

Sarah Duffen, 4th from right

! David de Graaf

David de Graaf

! Harry Smale

Harry Smale

Our surveys of teenage development suggest that parents often continue to provide too much help with daily tasks rather than to encourage practice of these skills. [TODO: references 44] While many young people take time to develop writing and drawing skills, in our experience it is worth continuing to practise at all ages. Drawing, painting and colouring are described as favourite activities by many teenagers and we know of many accomplished artists in different countries who show technical talent and considerable artistic expression. Hand-writing often continues to improve into adult life.

Developing recreational skills

Enjoying active sports and dance will bring many benefits for health and social contact in addition to the pleasure, self-confidence and the pride that may be gained from the activity. Success at sporting activities often seems linked with family interests and the opportunity to start early and engage in high levels of practice. We know many individuals who are exceptionally good skiers or swimmers, for example, and in each case their family gave them the opportunity to start early.

[Karen Gaffney], a young woman with exceptional swimming ability and stamina, has swum in an English Channel relay and her achievements can be found on her website ( http://www.karengaffneyfoundation.com/ ).

[Sarah Duffen] in the UK, now in her thirties, is competent in a range of sporting activities including swimming, water skiing, skiing and caving. She also drives a car and it may be that the range of physical activities that her parents encouraged from infancy provided her with the motor coordination and the visual-spatial skills to enable her to become a competent driver.

Sarah also enjoys dancing, as does [David de Graaf], in Holland. David is an accomplished cyclist and he is a musician.

[Harry Smale], in Jersey, now twelve years old, is an accomplished swimmer, skier, skateboarder and gymnast. He has been riding a bicycle since he was nine years old.

Dancing is an activity that is enjoyed by almost all the individuals with Down syndrome that we know and has the potential for enjoyment at whatever level of skill a person has achieved. Almost everyone enjoys a disco, while some achieve considerable skill in ballet and many display great talent in emotional expression through dance, mime and other performing arts.

Start early

It may be important to start activities such as swimming, dancing and gymnastics early. Many communities have opportunities for preschoolers to begin these activities. All the ordinary park games will also help, for example running, playing football, climbing and using swings/slides.

Teach by modelling

The advice to teach by demonstration is equally important for sporting and recreational activities. We have observed this in school physical education lessons and in dancing classes. Children with Down syndrome do not seem to find it easy to listen to or follow the teacher’s verbal instruction - rather, they watch the other children and copy them. In a dancing class, the teacher often does demonstrate the steps but in school physical education lessons, much of the instruction is verbal and this may be much less effective.

Join clubs

Many communities have clubs for sport and recreation, and some teenagers and adults will enjoy ordinary community facilities with non-disabled peers, but some will prefer to join clubs for others with intellectual disability or the Special Olympics so that they have a chance to shine at the sport and to find close friendships.

Follow individual interests

With more children with Down syndrome being educated in mainstream school, they will have the chance to join in a wider range of activities than may be available in many special schools. This will provide greater chances to find out what they enjoy and where their talents lie.

It is never too late

One of the authors has an adult daughter with Down syndrome, Roberta, who walked very late (4 years) and had a ‘poor gait’, ‘flat feet’ and ‘poor’ posture throughout her childhood. We are not a sporty family and she led a rather sedentary life until she joined the Special Olympics team at the age of 21 and started training for running events. She then walked with a straight back rather than a slouch, lost her ‘flat feet’ and improved the ‘normality’ of her gait. (She also lost weight!) Roberta also became quite a good runner and won some medals in Special Olympic events. She was very proud of these achievements. This suggests two points - it is never too late to improve the way basic skills are performed, and the best way to improve is through ordinary activity and exercise. It is also never too late to think of encouraging adults to become more active. Readers might also like to note that Roberta considerably improved her fine motor skills as an adult. She was unable to copy her name legibly at 16 years of age but by her late twenties she could write very well, using small legible writing. Similarly, she could not tie shoelaces at 16 but now ties them as quickly and efficiently as a typically developing individual.

Developing employment skills

Built on basic skills

Many employment skills will be built on the everyday basic skills that individuals have acquired in order to make snacks and help in the kitchen, to work in school on the computer or to help with tasks such as cleaning, ironing and gardening. Many young people, especially those who may be making slower progress with cognitive and academic skills, enjoy being involved in the real-life daily tasks in the household. The message is essentially the same as for recreational skills - the earlier we encourage children to join in a range of daily activities and give them the opportunity to practise the better.

Learning in the workplace

The first job that Roberta had was as a care assistant in a care home for elderly people. Here she undertook simple cleaning tasks, cleaning wash basins and dusting, washing up and ironing as well as taking drinks to the elderly ladies in the house. In this job, she was using skills she had learned at home and in her independent living situation. In her next job, she needed to learn some new skills as she was now working in a shop selling children’s clothes. She did some ironing and some pricing of clothes in this job and she developed her understanding of money in order to use the shop till. When she started her current job she had to learn more new skills as she was working with some machines that she had no previous experience of, she had to use her counting skills learned in adult education classes, and she built on her basic fine motor skills as she learned to put letters and leaflets together and to stuff envelopes. She was supported by a job coach for a few weeks until she was confident.

Do not underestimate abilities

Down Syndrome Education International recently began to employ adults with Down syndrome in its print workshop. This book has been assembled and packed by adults with Down syndrome. The six workers currently employed vary quite widely in ability and one young man often works with a partner as he does not have the fine motor skills for all the tasks - for example for picking up a single sheet of paper. However, his fellow workers are happy to work with him on tasks he cannot complete alone. All the workers learned all the tasks including operating several different machines much more quickly, and reached faster levels of work, than had been anticipated.

Conclusions

While motor development progresses more slowly for children with Down syndrome, the evidence that we have reviewed identifies a pattern of delay rather than specific difficulties, and many teenagers and adults eventually reach the same levels of skills as typically developing individuals, if they are given enough opportunities to practise. Research into the motor development of individuals with Down syndrome is limited, but some principles that can be used to guide effective intervention are emerging.

For everyone, movements develop and improve through active practice. It seems that individuals with Down syndrome often need more practice than typically developing individuals in order to consolidate their learning and achieve skilled movement patterns during childhood, therefore we need to create as many opportunities as possible to encourage active movement from infancy through to adult life. One research group stresses that it is possible that many adults with Down syndrome are performing at a lower level than is necessary, as they have shown dramatic improvements with practice in their studies.^[4]

More information and ideas for encouraging basic motor skills and those that will enhance recreational and employment opportunities can be found in the age specific practical books on motor skills in the DSii series.