contents · Topics featured in this issue are under-standing number, an overview of research ... • Teenagers and friends The need to ﬁ nd ways to increase friend- ... twenty-three’

Volume 2 • Issue 4 • February 2003 contents

Language and literacy 142

Teaching language through reading to a child with Down

syndromeHonor Mangan . . . . . . . . . . . . . . . . . 143

Can children with Down syndrome learn more than one

language?Lorraine Sanda . . . . . . . . . . . . . . . . . 145

Bilingualism in children with Down syndrome in GermanyEtta Wilken . . . . . . . . . . . . . . . . . . 146

Down Syndrome News and Update Volume 3

The next volume will include features on

• Friendships: ways to encourage friendships and increase

social inclusion

• Twins with Down syndrome

• Early Development Group activities

• Hearing - what to ask your audiologist

• Music education

• Inclusion - getting the Statement right

Editorial . . . . . . . . . . . . . . . . . . . . . . ii

Cover picture: The Inseparables – ballet of the chromosomes,

performed at the Conference on Medical Issues, Bielefeld,

Germany, November 2002. Full conference report on page 150

Regular features

European Down Syndrome Association news . . 149

Down Syndrome International news . . . . . . 158

Conferences . . . . . . . . . . . . . . . . . . 159

The Down Syndrome Educational Trust news . 160

Teaching number to children with Down

syndrome 125

Numicon maths and number bondsVikki Horner . . . . . . . . . . . . . . . . . . 126

The Portsmouth Numicon Research ProjectJoanna Nye . . . . . . . . . . . . . . . . . . . 129

Motor skills development in children

with Down syndrome 131

What do we know about the movement abilities of children

with Down syndrome?Ben Sacks and Sue Buckley . . . . . . . . . . . . 131

Friendships in teenage yearsAnnette Bertram and Sue Buckley . . . . . . . 148

iiDown Syndrome News and Update 2(4)

© 2003 The Down Syndrome Educational Trust. All Rights Reserved. ISSN: 1463-6212

http://www.down-syndrome.info/library/periodicals/dsnu/02/04/

Readership

Down Syndrome News and Update in its new format is continuing to prove popular and readership is increasing. Subscription letters have been mailed with this issue but if you are not sure if you are going to receive Volume 3, please phone the Trust offi ce and we will check your record. We would like all Down syndrome associations and organisa-tions to consider taking the publication for their libraries. Later this year, a web-based version as well as a printed version will be available. Please help us to increase our cir-culation by asking friends and colleagues to subscribe or become members of the Trust.

International perspective

In this issue, we have features and con-tributions from Ireland, Scotland and Ger-many. We have news of the last EDSA Board meeting in Germany, the conference and the celebrations for the 25th Anniversary of Arbeitskreis Down-syndrom. We also publish the EDSA Identity Document, which sets out the philosophy, values and principles underpinning its work. We have conference information for spring meetings in the USA and in Spain and in October, delegates from countries on every continent will gather in Singapore for the 8th World Congress on Down Syndrome. This is a great event for everyone, with programmes for children and adults with Down syndrome, so that it can be a family holiday as well as a learning experience. Details of the full Congress pro-gramme will be on the DSI website.

Editorial and Review Board

We are hoping to recruit a range of members to our Editorial Board from dif-ferent countries to refl ect our readership, therefore including parents, researchers and practitioners. Please think about supporting us in this way and helping us to increase the contributions and the interest of the publication.

Contributions and letters

We wish to publish a range of articles and items of interest, including reports of the activities of associations – large or small, families’ views and experiences, individual stories and case studies, as well as articles

and reports of research, so please think about writing for us. We also welcome news of conferences, new resources and forthcoming publications. If you know of any successful new projects or programmes, please ask those involved with them to write a piece for us. We are beginning to receive letters, but we would like more as we hope to encourage an exchange of views on sig-nifi cant issues. We have received contribu-tions on bilingualism and friendships for this issue. Maybe some of the points made in the motor development article will encour-age letters this time. The next issue will be mailed in April so letters by 15th April or earlier please.

Features

Topics featured in this issue are under-standing number, an overview of research into motor progress, language and literacy and friendships in teenage years.

• Understanding and using numbers

Learning to count and to understand numbers is not as easy as it may seem and the steps need to be mastered in a consistent order. Many children with Down syndrome struggle with number and the fi rst article continues to explore the ways in which the Numicon system can help to build understanding of the relationships between numbers. Research is needed to identify the reasons for the children’s number learn-ing diffi culties. Compared to research in language and literacy, number has been a neglected area and funding has enabled a small, in-depth study into the benefi ts of using Numicon in the classroom and the number progress of children to begin this year.

• Is movement delayed or different?

Most books for parents and overviews for practitioners, describe children with Down

syndrome as being affected by hypotonia and lax ligaments. They suggest these are the main cause of the children’s motor delays. A review of the literature indicates that move-ment patterns are achieved later but they are carried out in a largely typical manner, as the control from the central nervous system compensates for physical differences at the level of muscles and joints. One important fi nding is that children learn most effec-tively from visual cues and from being able to copy or imitate movements, and less effectively from verbal instruction. The real key to movement progress is practice – as it is for everyone.

• Language and literacy

The fi rst article illustrates the use of read-ing activities throughout the school day to enable a six year old to improve her spoken language and communicate with everyone in her mainstream school. This continues the emphasis on the value of literacy that began with parents’ accounts of using read-ing with their preschoolers in the fi rst issue of this volume. We hope that these exam-ples, full of practical tips, will encourage everyone to think of ways in which they can use reading to teach talking. Two contribu-tions on bilingualism add to the discussion and emphasise the natural way in which two languages may be learned but also the need to take account of the particular pattern of each child’s language experience.

• Teenagers and friends

The need to fi nd ways to increase friend-ships in teenage and adult years has been a theme in the last two issues. A letter from a parent to our AdviceLine and our answer are published in order to stimulate an exchange of ideas on this topic. The issue of imaginary friends and self-talk, common among teen-agers with Down syndrome is also raised and will be discussed further in the next issue.

Next issue

The next issue should reach everyone at the end of April, with the following ones being published in June, September and December. Submissions please as early as possible, with deadlines on 15th of each month for letters.

EditorialSue Buckley

Sue Buckley is Director of Research at the Down

Syndrome Educational Trust, Portsmouth, UK, and

Emeritus Professor of Developmental Disability at

Department of Psychology in the University of Port-

smouth, Hampshire, UK.

125



Understanding and using the number system is more diffi cult than may

be apparent at fi rst sight. In order to be able to count correctly, children have to master several skills.

CountingFirst, children have to learn the

names of the number words (the count word sequence) in the correct order (the stable order). Secondly, children have to learn how to count a small number of items so that each item is given a number name and only counted once (one-to-one correspondence). Thirdly, children have to understand that the last number they say in the counting task has a special meaning. It is called the cardinal number. It repre-sents the total number of the counted items and is the answer to the question “How many are there?” When children can correctly answer the “How many?” question, they are described as having achieved cardinality. At this stage, they can also respond correctly when asked to give a certain number of items from a larger set, e.g. correctly give 2 or 4 items from a set of 8.

The count sequence needs to be over-learned, in order, from one to ten, before it will be possible for the child to sepa-rate out the numbers in the sequence and count backwards and forwards from different numbers within this range, or to ‘count on’ when adding (i.e. if asked to add 2 items to a group of 4, the child can ‘count on’ from 4 i.e. “4, 5, 6”, and does not need to start counting from 1 in order to carry out the task).

QuantityAs children gain experience with

counting activities, the nature of number becomes better understood. Children realise that numbers represent quantity, that you can count all kinds of

different items (the abstraction princi-ple) and that the order in which items are counted is irrelevant – the answer will always be the same so long as each item is only counted once (the order irrelevance principle). They also need to understand that each next number represents one more equal unit before they will understand the equivalence of numbers, i.e. that 4 is the same as 4 ‘ones’ or 2 ‘twos’ or a ‘one’ and a ‘three’. This is where the Numicon system is so valuable – the shapes illustrate the real nature of the number system and the equivalence of numbers. This under-standing of the number system cannot be conveyed easily by just counting activities. Children need to understand equivalence before they can tackle number bonds – the topic of Vikki Horner’s article.

NumeralsChildren also have to learn the writ-

ten digits for the number words and this becomes more diffi cult for the numbers from 11 to 19 as in English they do not follow a logical naming system. From 20, the system becomes logical in its representation of tens and units, as we say ‘twenty-one, twenty-two, twenty-three’. In some languages (e.g. Chinese, Japanese, Korean) the same regularity for number names applies to ‘ten-one’, ‘ten-two’, ‘ten-three’, but in English the ‘teen’ words often confuse children. There is some evidence that children in countries with a regular number naming system for 11-19 learn to understand tens and units (place value) and calculate with the system more easily than English and American children.

Progress is in orderly steps and chil-dren need to understand cardinality and equivalence before they will understand place value. Using counting knowledge

to share begins by using “One for me, one for you” until the items are shared equally. Before this stage, children will give a handful to each child and not check to see if the piles are equal. At the next stage, children give a handful to each child and then count each pile. It is only at about 8 to 9 years of age that typically developing children count all the items to be shared and divide this number by the number of children to decide how many each child should have before beginning any distribution. This illustrates how long it takes children to really understand the nature and useful-ness of the number system.

We know very little about the number learning of children with Down syn-drome except at the early counting stages. We do know that, at present, many children do not reach the point where they understand equivalence and place value and this means they do not have a basis for really understanding money. We are excited by the opportunity to study in detail the number skills and understanding of a small group of chil-dren across the age range, described by Joanna Nye in the second article. We will be looking at how the children progress with the Numicon teaching pro-gramme and we will be looking at how far it helps each of them to achieve the key steps in understanding and using number described above. Once we are happy with the recording systems that we are developing for the local schools, we will be willing to share them and to include other schools and families in the data collection, as we know that many of you would like to participate. Please contact Joanna Nye if you would like to keep records for us.

Editor

Down Syndrome News and Update 2(4), 125

Teaching number to children with Down syndrome

Teaching number to children with Down syndromeWhat do we need to know?

See the publications in the

Resource list on p.130 for

more on how children learn

number

126Down Syndrome News and Update 2(4), 126-128



Numicon maths and number bonds

The more I work with Numicon the more I realise just how

clever and versatile, these materials are and the greatest factor is in its simplicity.

I have been helping my daughter Charlotte, who has Down syndrome,

develop her number skills in a very excit-ing and positive way. She spends twenty minutes a day in school working on an activity from the Numicon teaching programme and I

work with her at home developing number games to extend what she

is learning with Numicon to othernumber activities. After taking part in a 4 month evaluation project in Wiltshire last year – her ‘maths age’ at that point was 4 years 6 months based on an assessment of number skills using BAS II (British Ability Scales II) – at the project end, she had gained 11 months. Continuing with the programme for a further 5 months she was reassessed and had made a further 10 months gain in 5 months, bringing her ‘maths age’ to 6 years and 3 months. I knew she was making progress because I saw plenty of evidence of those number skills appearing in her every day living.

As a parent, I am obviously over-joyed with her level of progress, but more importantly, I feel we have found a key to unlock the numeracy door – and for many children with special educational needs, maths may no longer be out of reach.

The Numicon approach to teach-ing children number uses visual structured imagery. Its multi-sen-sory approach draws on 3 of chil-dren’s key strengths because they learn through ‘seeing’, they learn through ‘pattern’ and they learn through ‘action’. With all the UK Government lead initiatives of recent times feeding into the primary years, teachers are continually being asked to use more visual representations in their teaching and everything that Numicon has to offer sits at the heart of current thinking.

Many schools and parents, in par-ticular those parents who have chil-dren with Down syndrome, are using the teaching programmes that come with the range of teaching levels for primary aged children. The Numicon system is not specifi cally for children with learning diffi culties, it has been designed to teach number to all children. However, it is proving to have huge potential for children with special educational needs. It is also excellent for children learning English as a second language.

I would like to deal with one aspect of number here, which will give you some ideas on how to build the child’s understanding when teaching number bonds (initially the combinations of pairs of numbers that add to 10, see Figure 1).

As a parent, I am

obviously overjoyed with

her level of progress, but

more importantly, I feel

we have found a key to

unlock the numeracy door

Numicon maths and number bondsVikki HornerParent - Wiltshire, UK

Vikki Horner gives advice on using Numicon maths and number bonds based on her

own personal experience





Teachers tell me quite regularly that for many children, coming to grips with number bonds is a dif-fi cult task and for children with special educational needs this can be compounded by their varying levels of ability. Put this in the context of an abstract number system, is there any wonder? Using Numicon, children are making great progress, they can see the clues, they can see the answers to the questions being asked of them. They are building confi dence and self esteem because as the children are working through the activities and achieving, they are getting a sense of what it feels like to succeed with number, and more importantly, all of those avoidance tactics, ever present, are disappear-ing with the realisation that maths can be good fun.

Before I continue with number bonds I would like to point out that all children using this approach must fi rst work through the begin-ning activities of the Foundation Kit where the children will learn to rec-ognise the shapes from 1 - 10, order the shapes 1 - 10, give the shapes their number names and then order the shapes and numerals 1 - 10. Once this is learnt it will support the child’s learning throughout.[1]

To illustrate the use of Numicon materials to teach bonds I have illustrated the bonds to 10, using the Numicon baseboard and the ‘ten’ overlay (a plastic sheet provided in the Numicon kit), see Figure 1. You will see from the illustration that the child has all the combinations needed set out on the overlay, and you might call this stage ‘errorless learning’. The fi rst step would be for the child to match these combina-tions by placing the correct number shape on top of the overlay.

For a practice activity the ‘block of fl ats’ would be ideal (see Figure 2). Working in pairs or with the teacher, the child will choose the ten shape and fi ll it with the Numicon pegs then select two shapes which might fi t on top. The simplicity of this is that once the child sits the fi rst shape on top of the pegs she/he can SEE which shape is needed and fi t it next to the shape fi rst selected. Then fi lling that shape set with pegs again select a further two shapes – or one and then take the cue from the shape that is left – to make the next

combination set. Continue until all the combinations are in place.

As the child is beginning to gain some understanding of the bonds with this practice, the next step would be to take the combinations and place them on the table out of order (Figure 3). The child would then have to look carefully for the two number shapes. The practitioner would be taking turns modelling the correct language (we have a “7”, what do we need next ... that’s right, a “3”) and providing the appropriate questions to progress understand-ing. You may need to have the baseboard and number bond overlay you are working with near the child initially, as a prompt. This would be quite appropriate as we are not ‘test-ing’ the child are we? We are rein-forcing their level of understanding. I would see the use of the overlay as providing a ‘bridge’ to help extend the child’s understanding. You will know when it is time to leave it out.

A variation of this game could be, again with all the Numicon shape combinations on the table, both the child and the teacher would take turns to select two number shapes. This time, whilst asking the child to close their eyes, the teacher would choose 2 number shapes and hide them behind her/his back. The child can ask to see only one, then she/he would need to guess which shape is hidden. My daughter Charlotte loves this activity and is keen to choose and hide the two number shapes. When it is my turn to guess, and after choosing one (an example could be the 8) I would say “8 and errr...”, with a big pause and look at her. With a glint of knowing in her eyes and that big cheesy grin, she jumps in immediately with the answer! as in this case “2 makes ten”.

I am consistent with my language as I model the activity and the exam-ple above attests to it working which is lovely. Then she gets loads and loads of praise for helping me out!

When little children know the answers, they are so quick to respond, aren’t they? Well it would appear that Charlotte is no different to any other child. She can’t do it every time, but when she knows, and I offer her the opportunity to tell me, she does.

At this point of understanding, and with lots of practice, the child will be ready to move away from the

Figure 1

Figure 2

Figure 3





Numicon shapes. In order to extend the learning and that all important practice, we can introduce a set of combinations from a pack of numeral cards with the inclusion of a made up card for zero (10 + 0). All the card combinations will be face up on the table. Ask the child to shuffl e the cards (Figure 4). Then proceed, again in turns, to look and select two combinations to make ten. The next stage would be to turn the cards face down, selecting, checking and if correct, to take a further turn. If not correct, we would prompt the child to talk about the combination chosen. We would be looking to see if, for example, the child had selected a “6” and a “3” would she/he be able to give the correct number needed to go with the 6 and so on?

Back to the game, the incor-rect cards are placed face down in the same place and this is very important as we are encouraging ‘memory’, for the next card turned up may well be the number needed for the last combination.

Finally, take this game further into the abstract with an ordinary pack of playing cards. The game is played in exactly the same way (don’t forget the zero – I used a joker card to make mine (Figure 5).

In these examples I have tried to give the reader an idea of teach-ing number skills with Numicon followed by a process of extending that skill. There is no quick fi x – like everything else, practice makes perfect. The idea of turn taking is very valuable, and I do mean each turn, because with all the repetition needed, as far as the child is con-cerned the work is halved. They are still getting the practice but from the opposite end, being the ‘teacher’ offers the child the opportunity to practise her/his developing lan-guage. When the child can explain what is needed or what has to be done you know the task has been learnt. A fi nal point to mention here is that of consolidation. The child will need to be reminded of, or need to repeat occasionally, previously learnt number skills, especially after a break in the school term.

In fact, writing this article prompted me to revisit my daugh-ter’s number bond skills last night. So with a bag of M&M’s (sweets) we worked through the number com-binations for 4. With 2 sweets in

each hand (not held tightly I might add as they were not Maltesers!) placed behind my back, we played the guessing game. A quick change of combinations and back they went again. The lovely part here was on the fi rst ‘hide and look, see one’, she saw 2 and said “... 2 and 2 makes 4”. Then raced on with “3 and 1 and 1 and 3” without the need to see the combination, and I fi nished with the missing language “... makes four” which she then repeated. We continued with the 5 bonds and the 6 bonds. The M&M’s were still intact!! I found no problems. Those bonds were still there and I fi nished by giving Charlotte lots of praise. Charlotte fi nished by eating the M&M’s!

All that is left to say is “do have a go!!”

Reference1. Horner, V. (2002). More News with

Numicon ... Down Syndrome News and Update, 2 (1), 15-18.

Figure 5

Figure 4

Vikki Horner is working to sup-

port children with special educa-

tion needs and acts in an advisory

capacity to parents, associations,

schools and professionals who

wish to use the Numicon mate-

rials. She is available for training

days, workshops, seminars and

inset training and demonstra-

tions.

For further information please

contact Vikki:

Tel: 01747 861 609

Fax: 01747 861 503

E-mail:

[email protected]

Mobile: 07748 078 798

For further information on

educational issues relating to chil-

dren with Down syndrome please

contact the Down Syndrome

Educational Trust:

Tel: 023 9285 5330

E-mail: [email protected]

This article was first published in

Special! magazine, Autumn 2002, pp

42-43. Reproduced by permission.

Figures 1-5 photographed by Jackie

Calderwood

Those bonds were still there

and I finished by giving

Charlotte lots of praise

129



Down Syndrome News and Update 2(4), 129-130

The Portsmouth Numicon Research Project

The Down Syndrome Educational Trust has been awarded a small

grant by the Esmée Fairbairn Foundation to investigate the benefi ts of using the Numicon system to help children with Down syndrome to understand number. We also plan to develop further activities to extend their use of number knowledge to everyday applications. Our previous research studies indicate that number is more diffi cult than literacy for most children with Down syndrome [1, 2] and currently many have diffi culty learning adequate number skills in the classroom to prepare them for everyday life in the community.[3] We feel that the visual representation of number offered by the Numicon materials should help them, given their strengths in visual learning.[4-7]

The Numicon schemeThe Numicon approach to number

was designed by Tony Wing, Romey Tacon and Ruth Atkinson, to teach an understanding of number to typically developing preschool and primary children.[8] The scheme is based on the research and work of a number of authors [9-12] and empha-sises the value of using structured visual representation in designing materials that allow children to develop a ‘concept image’ for each number and see the relationship between numbers. This scheme has been described in more detail in a previous article in Down Syndrome News and Update.[13]

The Wiltshire pilot

projectA pilot study has already been

conducted following the number skills developed by 11 pupils with Down syndrome in Key Stages 2 and 3 in Wiltshire, with their teachers and assistants using the Numicon

materials and approach [14]. On aver-age, the children made 5 months progress on a standardised test over the 4 months of the study. This is a considerable achievement, as number skills in a group of primary children with Down syndrome in a recent 2 year longitudinal study were found to make only 4 months progress per year [1-2].

The current evaluation

project

The need for the researchThe results of the Wiltshire pilot

study, along with case study reports, indicate that the Numicon system deserves further, more detailed, evaluation as a tool for teaching number skills to children with Down syndrome. We also need to study the current ways Numicon is used to teach children with Down syn-drome in the classroom, so we can suggest practical improvements and develop new activities to improve its effectiveness in the classroom and at home.

How the project is being runWe have asked all schools in Port-

smouth and the surrounding area who have pupils with Down syn-drome to use the scheme with them for a year (January to December 2003). We were really pleased that 9 out of 10 schools agreed to take part and that we have 8 mainstream and one special school in the project. 16 children with Down syndrome (aged from 5 to 13 years) are participating, with permission from their parents. Parents are encouraged to support the school by practising Numicon activities at home if they wish to do so.

The project started with a train-ing day run by Vikki Horner for 40 teachers, classroom assistants, Senco’s and parents. The schools

and parents have been asked to keep a daily record of each child’s progress on the Numicon activities, along with observations about suc-cesses and diffi culties. In addition, we have carried out some stand-ardised assessments to measure the children’s baseline skills and we will repeat these at the end of the year to measure their progress.

In order to support the schools in using the scheme, I will be visiting each child four times each term to discuss progress and any problems that have been encountered. In addition, we will have a half-day workshop in each term at the Sarah Duffen Centre for staff to meet with Vikki and to share any diffi culties and solutions with each other.

At the end of the project, as well as developing the numbers skills of the 16 children, we hope to be able to put together a set of recommenda-tions about how to make the most effective use of the Numicon scheme for teaching children with Down syndrome.

References1. Byrne, A. (1997). The development of

reading skills in children with Down syndrome. University of Portsmouth.

2. Byrne, A., MacDonald, J. and Buckley, S.J. (2002). Reading, language and memory skills: A comparative longitudinal study of children with

The Portsmouth Numicon Research ProjectJoanna NyeThe Down Syndrome Educational Trust

The research teamJoanna is a psychologist who has worked for the Trust for 7

years, where her work has included number research with

children with Down syndrome. Sue Buckley is directing the

research project. Also involved in the project will be Gillian

Bird, who already supports most of the children in work

funded by Portsmouth LEA. Vikki Horner, an expert in the

use of the Numicon system, is the main contributor to the

workshops and will be providing advice to schools on the

use of the scheme where needed. Jo Nye can be contacted

at The Down Syndrome Educational Trust, tel: +44 (0)23

9289 3888, e-mail: [email protected]

130




The Portsmouth Numicon Research Project

Number skills for individuals with Down syndrome – An overview. By Gillian

Bird and Sue Buckley (2001). Portsmouth, UK: The Down Syndrome

Educational Trust. ISBN: 1-903806-13-5.

Number skills development for infants with Down syndrome (0-5 years). By

Gillian Bird (2001). Portsmouth, UK: The Down Syndrome Educational

Trust. ISBN: 1-903806-14-3.

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

By Gillian Bird and Sue Buckley (2001). Portsmouth, UK: The Down

Syndrome Educational Trust. ISBN: 1-903806-15-1.

Number skills development for teenagers with Down syndrome (11-16

years). By Gillian Bird and Sue Buckley (2002). Portsmouth, UK: The

Down Syndrome Educational Trust. ISBN: 1-903806-16-X.

A range of Numicon kits and accessories for use at home and in

classrooms is available. They cover Foundation and Key Stage 1 number

activities, for use from 3 years through primary school. Some pupils will

still benefit from them in secondary school.

Number resourcesThe following items are available from The Down Syndrome Educational Trust’s Resources brochure:

Down syndrome and their mainstream peers. British Journal of Educational Psychology, 72(4), 513-529.

3. Buckley, S., Bird, G., Sacks, B. and Archer, T. (2002). The achievements of teenagers with Down syndrome. Down Syndrome News and Update, 2(3), 90-96.

4. Pueschel, S.M. (1988). Visual and auditory processing in children with Down syndrome. In L. Nadel (Ed.), The psychobiology of Down syndrome. Issues in the biology of language and cognition (pp. 199-216). Cambridge, MA: MIT Press.

5. Freeman, S.F.N. and Hodapp, R.M. (2000). Educating children with Down syndrome: Linking behavioral characteristics to promis-

ing intervention strategies. Down Syndrome Quarterly, 5(1), 1-9.

6. Chapman, R.S. and Hesketh, L.J. (2000). Behavioural phenotype of individuals with Down syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 6, 84-95.

7. Bird, G. and Buckley, S. (2001). Number skills for individuals with Down syndrome - An overview. Portsmouth, UK: The Down Syn-drome Educational Trust.

8. Wing, T. (2001). Serendipity, and a special need. Mathematics Teaching, 174, 27-30.

9. Stern, C. (1949). Children discover arithmetic. Harper & Row.

10. Cuisenaire, G. and Gattegno, C. (1957). Num-bers in colour (3rd Edition). Heineman.

11. Vinner, S. (1991). The role of defi nitions in the teaching and learning of mathematics. In D. Tall (Ed.) Advanced mathematical think-ing. Kluwer.

12. Gelman, R. and Gallistel, C.R. (1978). The child’s understanding of number. Harvard.

13. Horner, V. (2002). More news with Numicon… Down Syndrome News and Update, 2(1), 15-18.

14. Ewan, C. & Mair, C. (2002). Wiltshire pilot project – Numicon. Down Syndrome News and Update, 2(1), 12-14.

The Numicon approach to teaching number Workshops presented by Vikki Horner at the Sarah Duffen Centre

The Numicon Approach to teaching number has been designed for pre-

school and primary level education. Children in secondary level education,

who are struggling with number, are also using Numicon to help develop their

basic number skills. This approach is suitable for children of all backgrounds

and abilities and has huge potential for children with special needs and in

particular children with Down syndrome. It is also suitable for children

learning English as a second language. The games and activities are multi-

sensory and the materials are colourful and easy to use. The Numicon system

teaches children number through structured visual imagery using three

strands, pattern, counting and arithmetic and provides tactile introductions to

important concepts in arithmetic.

This approach draws on three of children’s key strengths because they learn

through ‘seeing’ they learn through ‘pattern’ and they learn through ‘action’.

In particular, it helps with counting, pattern, odd/even numbers, place value,

estimation, addition and subtraction for example, and also provides the necessary maths language. This will become apparent during

the demonstration of the materials. Extension games and activities to assist with generalisation of number skills will also be discussed in

detail on the day. Teaching the time will also be covered using this approach.

Vikki will be offering Numicon training as part of the Down Syndrome Educational Trust’s workshop programme on:

Wednesday, March 12th 2003 • Wednesday, June 4th 2003 • Wednesday, September 24th 2003

Each of these dates follows a 2 day workshop programme for either preschool, primary or secondary age children.

Some delegates might wish to attend all 3 days. Please see our Services brochure for more details.

Reference Description Excl.VAT Incl.VAT

WK/20030312 Numicon workshop - 12 March 2003 57.45 67.50

WK/20030604 Numicon workshop - 4 June 2003 57.45 67.50

WK/20030924 Numicon workshop - 24 September 2003 57.45 67.50

131




What do we know about the movement abilities of children with Down syndrome?

Introduction

Many babies and young children with Down syndrome are late

to reach the early motor milestones such as grasping, rolling, sitting, standing and walking. There is wide variability in progress, with some reaching these milestones as early as typically developing infants and some being particularly slow in achieving them. Most parents are advised that physiotherapy will help, but do we actually know the reasons for this slower progress that will provide guidelines for effective therapy? Do we know if physiotherapy actually makes any difference to progress and, if so, how? Is the motor progress of children with Down syndrome just delayed (i.e. slower but otherwise the same as in other children) or is it actually different – due to physical differences in their muscles, ligaments or central nervous systems?

Whatever the answers to these questions may be, we know from our own practical experience and research that the majority of chil-dren with Down syndrome achieve all the basic motor skills necessary for everyday living and personal independence. They may be later to achieve them, and their move-ments may seem a little clumsy or less refi ned as they carry out tasks, but they still have adequate skills for daily competence. They may have more diffi culty in becoming skilled in games and recreational activities

but many individuals do reach high levels of achievement when given the opportunity.

Research into the motor develop-ment and motor skills of children and adults with Down syndrome is limited and, as we have studied the available information, we have come to believe that some unhelpful myths keep being repeated as explanations, without supporting evidence. One of those myths is hypotonia or ‘poor muscle tone’. Almost every article we have read has used hypotonia as an explanation, when in fact it prob-ably plays little part in determining children’s motor progress. We will return to this issue later.

In this article, we consider four questions. 1. What do we know about motor

development in typically develop-ing children and the factors that may infl uence rates of progress or levels of skills achieved for differ-ent motor activities?

2. What do we know about the pat-tern of motor development usu-ally seen in infants, children and teenagers with Down syndrome?

3. What do we know about the effects of therapeutic interven-tions?

4. Can we draw on these three sources of evidence to identify some principles for effective inter-vention and activity programmes for individuals with Down syn-drome across the age range?

Before we can discuss motor skills,

What do we know about the movement abilities of children with Down syndrome?Ben Sacks and Sue BuckleyThe Down Syndrome Educational Trust

Are motor skills delayed or different?

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we need to recognise that the term covers a wide range of activities and actions and we have divided them into three somewhat arbitrary groups in order to more conveniently discuss therapies and interventions later.

What are motor skills?The ability to move is essential

to human development, and chil-dren develop a remarkable range of motor skills from the fi rst year of life through to adult life. Some are essential to basic human develop-ment and others are specialised and optional. For practical purposes, motor skills can be considered under two main headings:• basic skills necessary for everyday

life activities, and • recreational or specialist skills

which are optional and based on interests and aptitudes. Basic skills include sitting, walk-

ing, running, climbing stairs, pick-ing 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 skip-ping, 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 fi ne motor skills. • Gross motor skills are those

concerned with whole body move-ment including sitting, walking, running and climbing stairs.

• Fine motor skills tend to be those requiring fi ne manipulation of fi ngers and hands including pick-ing up objects, using cups, knives and forks, pouring drinks, dress-ing and managing fastenings, holding and using pencils, pens, scissors and keyboards. 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 fi ne motor activities. However, they provide a useful practical way of dividing the whole range of pos-sible 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 thera-pists tend to be experts in fi ne motor skills, although their skills will often overlap. Recreational skills tend to be taught by teachers, physical edu-cation experts, sports coaches and specialists such as music teachers.

Movement influences social

and cognitive progressWhile progress in basic gross

and fi ne motor skills is important because the ability to carry out the movements has direct and practical benefi t on a child’s daily living and independence, motor progress is also important because these abilities also infl uence social and cognitive development. The following list gives just a few examples of these links; • being able to reach and grasp

allows a child to begin to explore the characteristics of objects in his or her physical world;

• being able to sit increases the ability to use arms and hands for playing;

• being able to walk allows a child to carry toys and objects and to explore the world more effectively than crawling;

• being able to move independently also increases opportunities for social interaction and language learning. For example, once a child can move, they can go to see what happens when the postman comes to the door or the tele-phone rings. They can follow their carers around so that they are talked to and included in everyday activities.

1. What do we know

about the development

of motor skills in

typically developing

children?

In this section we consider fi rst what we know about how all human movements are controlled and improved, and then what we know about the developmental progress of motor skills in children. We have provided some detail for the reader because a number of the explana-tions given for the motor delays of children with Down syndrome can only be discussed if the reader has some knowledge of the mechanisms involved in movement.

The coordination of motor

controlThe mechanisms of normal motor

control are complex and not yet fully understood. Any movement requires the coordinated action of the brain, nerves, muscles and limbs and, as a movement is carried out, there is fast continuous control and adjustment occurring as the brain monitors the progress of the action. Feedback from the muscles and limbs, from vision and from balance systems is an integral part of all movement control as it is taking place. This is illustrated in Diagram 1.

The central nervous systemIt is known that all ‘voluntary’

movement is controlled by impulses from nerves that originate in the central nervous system, which consists of the brain and the spinal cord. With the exception of some basic safety refl exes (spinal refl exes), which may be mediated through the spinal cord, all coordinated move-ment sequences are determined by the brain. Although there are parts of the brain that are mainly

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BRAIN EYES

SEMI-CIRCULAR CANALS

SPINAL CORD

MUSCLE

TENDON

LIGAMENT

NERVES

The brain and spinal cord constitute the central nervous system (CNS). All of the information processing necessary for

producing the coordinated movement of skeletal muscle takes place in the CNS.

The eyes obtain visual information about the environment and the body itself. This information is integrated with other types

of information as part of the feedback system for muscular coordination.

The semi-circular canals near the inner ear (vestibular apparatus) provide information about the position of the head

relative to horizontal and vertical planes (indicating upright, leaning or falling body positions) and acceleration (changes in

speed). They are therefore important in maintaining balance.

The nerves of the peripheral nervous system may be motor or sensory. Motor nerves carry information from the central

nervous system, and control muscle contraction and relaxation. Sensory nerves carry feedback information from muscles,

tendons and other tissues to the CNS.

Muscle is a tissue which, using the glucose and oxygen provided by the circulating blood, converts chemical energy into

mechanical energy by contracting. Muscle contraction produces the movements involved in all body activities. The two

important types of muscle are skeletal muscle and smooth muscle. Skeletal muscle moves the limbs, trunk and other parts of

the body which are involved in so-called voluntary movement. It is controlled by nerves from the CNS.

Tendons are cable-like structures which connect muscles to the muscle attachments on bones.

Ligaments are similar to tendons but generally attach bones to each other.

Diagram 1. The coordination of motor control

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concerned with the control of move-ment, such as the cerebellum and the motor and pre-motor areas of the cortex, it is important to note that motor control is widely distrib-uted in the brain, with many other areas being involved.

The musclesThe skeletal muscles are those

which move the limbs, trunk, neck and other parts of the body. They are sometimes called ‘voluntary mus-cles’ because they produce the move-

ments involved in activities such as walking, han-dling objects and participating in sports. It is impor-tant to note that these movements, which involve a

very large number of brain activities as well as very many accurate muscle movements, are not really under any form of conscious control at all. When we carry out these func-tions, we are mainly conscious of the results we wish to achieve rather than the detailed means by which we attain the outcome. For example, we think ‘I will pick up my keys’ – we do not think ‘I need to move this muscle and then that one to direct my hand to the keys’.

The peripheral nervesMuscles have two basic forms of

nerve supply:• efferent nerves, which carry

messages from the brain to the muscle, and

• afferent nerves, which carry information to the brain. The efferent nerves activate sys-

tems which cause the muscle to contract with varying degrees of strength and speed, depending upon the type of message and the type of muscle fi bres receiving the impulses. The impulses in the afferent nerves contain feedback information about the movement and position of the muscles and limbs, which the brain uses to ensure that the required movements are correctly carried out.

Feedback systemsIn order to maintain and control

appropriate body posture, the brain obtains information from number of sources:

• body position information from detectors in the muscles and liga-ments (proprioception);

• visual information from the eyes (visual feedback);

• and information about the posi-tion of the body in relation to the horizontal and vertical, as well as acceleration, from the semi-cir-cular canals near the inner ear (vestibular system).

All this information (feedback) is continuously processed in the brain and it enables the brain to send appropriate instructions to the muscles to produce the highly coordinated movement patterns required for normal function.

Ligaments and tendons Tendons are cable-like structures

which connect muscles to the muscle attachments on bones. Ligaments are similar to tendons but attach bones to each other. It is generally agreed that the ligaments in people with Down syndrome are more elastic than in typically developing people. The effect of having liga-ments which are more stretchy than usual is that the joints are capable of a much greater range of movements than is typical. It is likely that this effect has been confused with that of muscle tone.

Change in performance over

timeWhen children or adults begin

to learn any new neuromuscular skill, such as walking, drawing or swimming, they initially carry out the task in a clumsy, not very well coordinated fashion. But, with suf-fi cient practice, they will eventually perform the task in a smoother and more effi cient manner. The effects of practice on the brain have been demonstrated with suitable brain imaging techniques.

During this learning period there may be some changes in the muscles involved, such as some increase in strength, but virtually all of the changes related to the development of the new skill take place in the brain. There is no evidence that fac-tors such as bone length, stretchy ligaments or altered muscle tone have any signifi cant effect on neu-romuscular actions. Presumably this is because brain control systems compensate for these factors during the learning process.

Since muscles ‘do what they are told’, and since the instructions to the muscles all come from the brain, differences in the quality of movement such as slower or less well coordinated movement, can be seen to have their origin in the brain and where improvements in move-ment occur they are associated with changes in brain mechanisms.

Motor programmesIt is thought that practice leads

to learning and to the development of ‘motor programmes’ or plans for particular movement sequences in the brain. These motor programmes enable movement sequences to be performed more quickly and accu-rately over time. As practice of the movement continues, the motor programmes become so well learned that they are referred to as being automatised. It has been suggested that once motor programmes are automatised, they make less demand on the information processing capacities of the brain. The reader is reminded that the control of the majority of basic movements is car-ried out at a subconscious level.

The effects of automatisation can be made clearer by considering a task in which a series of complex movements are learned, such as when learning to drive a car. In this situation the learner has to consciously control the series of movements initially – i.e. to think what to do next. However, over time, the series of actions may become so well practised and automatised that virtually no conscious control is needed to change gear or to steer the car. Now the driver can give full attention to road conditions and safety, as the information processing demands of controlling the car have been considerably reduced.

Information processing and

decision making

Subconscious processingIn all movements, there is a

signifi cant information processing requirement as the brain continu-ously processes feedback and sends control messages to the muscles in order to carry out the activity suc-cessfully, but it is at a subconscious level. The individual simply gets up and walks or picks up a cup without any conscious consideration of the controls on the movements needed

The brain will give instructions

to the muscles that

compensate for the effects of

lax ligaments or muscle tone,

or arm or finger length, when

carrying out a movement

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for the particular situation – any conscious mental activity is simply focused on the goal of the activity.

Conscious processingIn addition, some motor tasks

require conscious information processing and decision making before carrying out the movement. The reaction time task used in research is one example, as a con-scious level of decision making is involved before initiating the move-ment. The reaction time is the time taken between the signal to start a movement and the movement itself. Here a person may be instructed to tap the right button when the red light comes on or tap the left button when the green button comes on. He or she has to identify which light is on and then initiate the correct movement. A physical education lesson, in which the pupil has to follow instructions, is another exam-ple involving conscious processing of information before or during a movement.

Processing demands and processing abilities may vary

The information processing and the decision making requirements of a motor task may infl uence an indi-vidual’s ability to perform the task or the speed with which the task is carried out. Some individuals may take more time to process informa-tion in the central nervous system and some may have more diffi culty understanding task requirements or following instructions.

In summaryThe production and co-ordination

of movement comes from the central nervous system. Movements are controlled by the brain and practice leads to the establishment of learned motor programmes, which increase the speed, accuracy and smoothness of movements. The brain is focus-ing on the endpoint or goal of the activity and it controls the muscles to move the limbs to achieve that goal. The brain will give instructions to the muscles that compensate for the effects of lax ligaments or muscle tone, or arm or fi nger length, when carrying out a movement.

Motor development from

infancyWe have described the factors

which infl uence all movements and

in this section we identify the way in which motor skills actually develop during infancy.

Motor skills develop in a

predictable sequenceThere are many studies which

have demonstrated that basic gross and fi ne motor skills usually develop in a specifi c order and 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 have been documented. Specifi c gross and fi ne motor skills are assessed on many developmental tests, and motor skills also infl uence the scores of infants on some cognitive tests as they are expected to demonstrate their understanding by picking up or manipulating objects or toys.

Individual variationAs all parents know, the age at

which healthy, typically developing children reach milestones can vary widely with some walking as early as 10 months and some as late as 24 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 living circumstances.[24]

Later skills tend to be built

on earlier ones The early gross motor skills of sit-

ting, 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 sport-ing skills.

All motor skills improve over

time and with practiceThis point has already been made,

but it is worth emphasising. All children perform movements in a ‘clumsy’ or immature way at fi rst and refi ne their performance with practice, often over many months or years. For example, for typical chil-dren, posture control when walking continues to improve up to 7 or 8 years of age.

2. What do we know

about the development

of motor skills in

children and adults

with Down syndrome?

Research into the development of motor skills in infants and children with Down syndrome is limited at the present time[1,2,3] and it can be divided into two main types – descriptive studies and experimen-tal studies.

Types of researchThe studies of infants and children

are mainly descriptive and there have been a small number of experi-mental studies of children but most of the experimental work has exam-ined the skills of teenagers and adults. Descriptive studies usually document the ages at which skills are attained. These may be basic gross and fi ne motor skills, and sometimes recreational skills as well as component skills such as balance, or eye-hand coordina-tion. Experimental studies usually require participants to learn a new motor action or to carry out actions at speed.

Limits of researchUnfortunately, the fi ndings of

many research studies in the area of motor skills have to be interpreted with caution for several reasons.

Small numbers. Researchers have often studied very small numbers of children or adults. For example, one widely quoted study reports fi nd-ings based on 2 children with Down syndrome in one age group and 4 in another.[4] Given the consider-able variability of progress among children with Down syndrome, it is impossible to judge how representa-tive the performance of such small numbers of children actually is, and therefore whether the fi ndings can be generalised.

Comparison groups. Another weakness of many studies lies in the comparison groups that they use. Many studies of both adults and children compare their motor skills with typically developing individuals of the same chronological age, usu-ally reporting signifi cant differences

All children perform

movements in a

‘clumsy’ or immature

way at first and refine

their performance with

practice

136





in performance, with those with Down syndrome having ‘poorer’ skills. However, when the compari-son group is matched on mental age, then there is often no signifi cant difference in the overall motor per-formance of the groups. Any differ-ences that are found tend to refl ect strength and balance issues or speed and accuracy of performance, rather than overall motor control.

Practical relevance. A number of studies are of theoretical rather than practical relevance. Currently many researchers are interested in the detailed way in which movements are carried out by individuals with Down syndrome and they measure differences in the angles of joint movements, take measures of the actual activation patterns of mus-cles, or study the differences in pat-terns of gait. Most of these studies indicate largely normal movement patterns. [10,14,15,22] Some do indicate difference in muscle activation pat-terns[9,13,15] however, since no one has conscious control over the sequence of actions of muscles when moving, these studies have little practical relevance.

The pattern of motor

development for children

and adults with Down

syndromeOne of the important issues in

the study of motor development in people with Down syndrome is whether there is delay in achieving milestones and/or whether move-ments are abnormal or not properly suited for their purpose. Some of the

relevant research is considered in this section.

Development is the same but

delayedMotor development for children

with Down syndrome is usually signifi cantly delayed. All the basic motor skills are achieved by infants and children with Down syndrome in the same order, but usually at sig-nifi cantly older ages when compared with typically developing infants and children. [5-8] This is illustrated by the examples given in Table 1.

There is increased variabilityThere is greater variability in

the basic motor progress of chil-dren with Down syndrome, when compared with typically developing children. For example the average age for walking in typically develop-ing children is 13 months and the range is 9-17 months, while the aver-age age for walking in children with Down syndrome is 24 months and the range is 13-48 months.

Clumsiness and refinement

of movementsMany movements continue to

seem somewhat ‘clumsy’ in indi-viduals with Down syndrome.[9] It takes them longer to improve their skills and they may not reach the same levels of fi ne coordination, but the levels they do achieve will usually be adequate for successful performance.

More difficulty with balance

and strengthA number of studies [2,10,11] indicate

that balance is a particular diffi culty

and continues to be a weakness in teenage years.[12] This may explain why many young people with Down syndrome fi nd riding a bicycle dif-fi cult to master. Some children do become competent on two wheels but many do not achieve this, though they may be very competent on a tricycle.

Strength also continues to be lower even when the comparison is with young people of similar general mental abilities. The explanation for this is not clear. Everyone increases their muscle strength through active movement and it could be that indi-viduals with Down syndrome engage in less active movement, although there is no direct evidence of this. The babies, toddlers and children that we see regularly in our pre-school and school services seem to us to be quite active. It could be that children with Down syndrome need more exercise to reach the same levels of strength.

Slower reaction timesWhen teenagers and adults with

Down syndrome are asked to per-form motor tasks in experimental situations, such as tapping the right button when the red light comes on or tapping the left button when the green button comes on, their reac-tion times are slower compared with mental age matched controls.[14,15]

Slower movement timesSome studies have also reported

slower times (compared with mental age matched controls) for the movement component of tasks as well as the reaction time.[14,15] The movement time would be the time

Cunningham & Sloper [6] Berry, Andrews & Gunn [7] Winders [8]

Attainment Age range(months)

Average age (months)

Age range(months)


Age range(months)


Rolls 4 to 11 8 2 to 12 – 6 to 7

Sits steadily without support 8 to 16 11 7 to 16 11

Pulls to standing 10 to 24 17 8 to >28 17

Stands alone 16 to 36 22 – – 21

Walks without support 3 steps or more 16 to 42 24 14 to 36 24 26

Grasps cube 4 to 10 7 – – – –

Attempt scribble imitate 10 to 21 16 – – – –

Picks up sultana with thumb and

forefinger only

12 to 36 20 – – – –

Puts pegs in pegboard 17 to 36 23 – – – –

Table 1: Motor Milestones - Ages of attainment for children with Down syndrome. Source: Motor skills development for individuals with Down syndrome [5]

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Age Range Average age

Mental age 3y 3m - 6y 8m 4y 8m

Gross motor age 3y 5m - 6y 0m 4y 9m

Fine motor age 4y 2m - 6y 2m 4y 10m

(The fine motor scores are based on 12 children, as three children with

mental ages between 3 years 3 months to 3 years 9 months were not

tested on the fine motor scale.)

Table 2: Relationship between mental and motor progress

taken from initiating movement to reaching the end point of the move-ment – for example, the time taken from initiating the movement to completing the tap in the reaction time task.

Practice improves

performanceData from experimental studies

requiring fi ne motor tasks to be carried out [15,16] and from real life studies of activities such as run-ning, [17] report signifi cant improve-ment in the performance of tasks with practice – improvements in both speed and accuracy of move-ments. However, some of these studies concluded that individuals with Down syndrome require about twice as much practice to reach the same level as typically developing individuals of the same mental age. They seem to need more practice to establish motor programmes.

Visual learnersSome experimental studies have

shown that adults with Down syn-drome are more successful at learn-ing new movements in response to visual cues than to verbal instruc-tions.[14] It has been suggested that this may refl ect different brain organisation for movement con-trol,[23] but this hypothesis needs more research. The implication of this is that children and adults may learn new skills better by modelling or copying them than by being given verbal instructions.

Why this profile of

development?At the present time, we do not

have enough knowledge about the reasons for these features of motor development but we do have several facts which may provide some clues and guidance for more effective intervention.

Closely linked to mental ageBoth the descriptive studies of

children’s progress and some experi-mental studies of motor skills in adults identify that the motor per-formance of individuals with Down syndrome is closely linked to their general cognitive progress. In other words, for gross motor, fi ne motor and experimental tasks, they per-form like younger children with the same cognitive or mental age. This

suggests delayed rather than differ-ent motor progress.

For example, one American study charted the progress of 15 children with Down syndrome who were 7 to 10 years of age, and who had had the advantage of well-organised early intervention and education. The fi ndings in Table 2 show the close relationship between their mental and motor progress. For the reader interested in the data, the correla-tions between the fi ne motor and gross motor skills and mental age are both .64 and statistically highly signifi cant.[15] A study of teenagers also showed the close link between motor skills and mental age.[12]

The reason for the close asso-ciation of overall mental and motor development is not clear. It may refl ect that the control of motor skills is largely a central nervous system activity and that brain func-tions play a central role in motor development in the same way as they do in cognitive development. It could be that both mental and motor development are delayed by similar differences in brain processes. One of these differences could be speed of information processing in the brain. Another could be the ability to establish learned programmes in the brain. A number of studies have highlighted the inconsistent performance of children with Down syndrome on both cognitive and language tasks. It seems to take them longer (i.e. they need more practice) to effectively consolidate new learning.

More dependent on visual

feedbackResearchers have reported that

children and adults with Down syn-drome rely more on visual feedback while carrying out a task than typi-cally developing individuals. They may need to rely to a greater extent on visual feedback because they take much longer to establish learned motor programmes for the task. This can make their performance seem as if they are tackling each rep-etition of the task as if they have not performed it before. It also means that their pattern of movement may be jerky and inconsistent from one time to the next even though they can actually perform the task cor-rectly. This fi nding could explain longer movement times because, as

a learned programme is established, the sequence of movements needed can be performed more quickly.

BalanceAs already identifi ed, there is

some evidence that balance may be a particular diffi culty for individuals with Down syndrome. In one experi-mental study, the balancing abilities of infants with Down syndrome were compared with typically developing infants and the two groups were carefully matched for their abil-ity to stand unsupported.[11] The infants were put into a small room in which the fl oor was stable but the walls could be moved to give the impression of the room tilting. All the infants reacted as if the fl oor was also tilting by leaning, swaying, staggering or falling, that is, they reacted as if to stop themselves from falling even though the fl oor did not move. The visual information sug-gested they were being tilted even though the vestibular information 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 fi nally 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 fi ndings 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, possibly indicating that their vestibular system is not as effi cient at this point.

138





There is other evidence to suggest that balance continues to be an area of specifi c diffi culty into the teenage years. In an Australian study of the motor skills of 81 teenagers,[12] bal-ance was the weakest area and still at a 4 year level when their other motor skills range from 5 to 9 year levels. Their mean mental age was 4 years 9 months and therefore most of the motor skills for the group were higher than might be expected, with response speed at the same level as mental age and only balance lower than mental age. There was con-siderable variability in motor skills between individuals and, as in other studies, mental and motor skills were related. Individuals with lower mental ages tended to have lower motor skill scores, and vice versa.

Physical differencesMany authors assume that the

profi le of motor development in Down syndrome is largely the result of physical differences, but the evidence for this point of view is limited. Almost every discussion of motor development in children with Down syndrome starts with descrip-tions of hypotonia and lax ligaments, and suggests that they are to blame for the motor delays.

Hypotonia and lax ligamentsMany newborn children with

Down syndrome have very fl ac-cid muscles and are described as ‘fl oppy’. There are many specifi c dis-orders which are associated with the

birth of ‘fl oppy’ infants; in some cases this disap-pears as the child develops and in some cases they remain in this

‘fl oppy’ state. There are a few follow up studies of infants with Down syn-drome and it seems that this infant fl oppiness does improve over time. However, there is a fairly widespread belief that the children remain with a degree of hypotonia and this state is often invoked as being respon-sible for much of the ‘poor’ motor function seen in people with Down syndrome.

However, this is a rather contro-versial issue since there is no proper agreement as to the defi nition of hypotonia and there is no consensus as to how to measure it. In addition, some recent studies have demon-

strated that the hypotonia seen when children and adults with Down syndrome are not moving (i.e. their tendency to have more ‘fl oppy’ mus-cles at rest) does not actually impair coordinated movement.[see 4,15]

It is generally accepted that liga-ments and tendons in individuals with Down syndrome are more ‘stretchy’ than is usual. This would explain why they are able to move their joints into extreme positions. However, research indicates that this does not prevent control of the joints to perform ordinary move-ments.[4,15]

Clearly, a great deal of research needs to be done to clarify the dif-ferent contributions of the stretchi-ness of ligaments and tendons, the strength of the muscles, the ‘tone’ of the muscles and the contribution of the nervous input to the greater picture of motor function.

Health issuesSome authors rightly draw atten-

tion to a number of conditions that are more common in individuals with Down syndrome and which may affect a child’s or adult’s ability to be active.[1,2] These include heart conditions, underactive thyroid function, vision and hearing issues, and obesity. It will be important to take account of health factors for individual children and adults when considering active sports but most will not prevent progress in basic gross or fi ne motor skills. The rel-evance of each of these illness condi-tions for activity will be the same as it is in the rest of the population.

In summaryThe movement skills of children

with Down syndrome are largely delayed rather than different. They progress at the same pace as their general mental development. They may take longer and need more practice to improve their perform-ance and they may continue to have more diffi culty with tasks requir-ing balance. Most children achieve competence in all everyday gross and fi ne motor skills even though they develop more slowly. Despite the presence of lax ligaments and possible hypotonia, there is little evidence that they impair controlled movements as the central nervous system controls all movement and compensates for such variables.

3. What do we know

about the effects of

interventions?

Interventions for basic skills There are very few evaluations of

therapy aimed at improving or accel-erating the development of basic skills.[1] Some early intervention programmes which target all aspects of development indicate gains in motor development with milestones reached earlier.[18] This may be because babies are encouraged to be more active and interested in their environment, and encouraged to play and to move.

One evaluation of a common form of physiotherapy reported no signifi -cant gains in motor development for infants in therapy compared with infants not receiving therapy. [19]

Another recent study evaluated a very specifi c therapy to encourage walking by placing infants on a treadmill for up to 8 minutes a day from the time that they could sit without support.[20] The treadmill infants walked on average 101 days earlier than a comparison group, presumably as a result of this increased practice.

We found no evaluations of the adaptations and advice offered to improve gross or fi ne motor skills. 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 activi-ties 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 benefi cial, 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 do not necessarily benefi t from the recommendations given in books of practical advice – we do not know because the studies have not been done. However, the benefi ts are likely to be mainly the result of providing games and activities which encourage and increase active

The movement skills

of children with Down

syndrome are largely delayed

rather than different

139





movement therefore increasing the child’s amount of practice. Practice allows the central nervous system to develop more effective motor programmes for smoother and more coordinated movement.

Interventions for

recreational skillsWe also found no data on the

numbers of teenagers or adults who become competent in recreational skills or any studies documenting the effects of teaching such skills to a representative group. 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 benefi ts. We would entirely agree with this advice, as it applies to everyone, but we would benefi t from more information on successful programmes and some actual measurement of the benefi ts.

Preventing abnormalitiesSome physiotherapists suggest

that the main aim of therapy in infancy is to prevent abnormal postures and gait,[21] which may be the result of lax ligaments, such as widely splayed hips when sitting, a wide based gait or turning feet out when walking. However, as we have already discussed, some of the most knowledgeable current researchers in the area argue that ‘abnormali-ties’ in the way movements are seen to be carried out may be necessary adaptations at particular stages, for example, to enable children to maintain their balance.[9,13] They argue that the movement seen may be the best adaptation the child or adult can make 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 devel-opmental 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 move-ments. 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.

One concern we have about sup-portive aids that restrict movement is that they prevent the child from being able to control the restricted joint and muscles. 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 continu-ing 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 fl exible system and possibly no harm comes from these actions in the long term.

In summary It seems that we have no real evi-

dence that interventions other than encouraging and increasing the opportunities for active movement infl uence motor progress.

4. Implications for

effective intervention

For basic skills – from infancy

Encourage active movementSince the most important factor in

improving movement is the control from the brain, it is important to fi nd 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.

Encourage practiceFun activities then need to be

encouraged as often as possible to give the child practice. Some activi-ties may need support such as walk-ing. When babies bounce on 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 benefi cial. Baby bouncers will also strengthen the legs if used for brief, supervised

sessions. We know that many pro-fessionals advise against these aids, but if they are used wisely they can increase the child’s opportunity to practice walking, as the treadmill study did.

Choose activities to help balance and strength

All active movement will be improving balance and strength, but it is also possible to think of par-ticular 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 ball of different textures) will improve hand strength.

Teach by modelling Research indicates that it is more

effective to teach children with Down syndrome by modelling the activity than by giving verbal instructions. This suggests that children will learn more effectively by being able to imitate or copy correct actions.

Encourage fi ne motor skillsWhile 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 a favourite activities by many teenagers and we know of many accomplished artists in different countries who show technical talent and considerable artistic expression in their art. Hand-writing often continues to improve into adult life.

Recreational skillsEnjoying active sports and dance

will bring many benefi ts for health

140





and social contact in addition to the pleasure, self-confi dence and pride that may be gained from the activity. Success at sporting activities often seem linked with family interests

and the opportunity to start early and engage in high levels of practice. We know individuals who are excep-tionally 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.karengaffne

yfoundation.com/). Dancing is an activity that is enjoyed by almost all the individuals with Down syndrome that we know and has the potential for enjoyment 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 and mime.

Start earlyIt may be important to start activi-

ties such as swimming and gymnas-tics early. Many communities have opportunities for preschoolers to begin these activities as well as dancing. All the ordinary park games will also help, for example running, playing football, climbing and using swings.

Teach by modellingThe advice to teach by demon-

stration 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 fi nd 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 clubsMany communities have clubs for

sport and recreation, and some teen-agers and adults will enjoy inclusive facilities 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 fi nd close friend-ships.

Follow individual interestsWith more children with Down

syndrome being educated in main-

stream 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 fi nd out what they enjoy and where their talents lie.

It is never too lateOne of us has a daughter with

Down syndrome who walked very late (4 years) and had a ‘poor gait’, ‘fl at 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 run-ning events. She then walked with a straight back rather than a slouch, lost her ‘fl at feet’ and improved the ‘normality’ of her gait. (She also lost weight!) She 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 may be 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.

References1. Block, M.E. (1991). Motor devel-

opment in children with Down syndrome: a review of the literature. Adapted Physical Quarterly, 8, 179-209.

2. Reid, G. & Block, M.E. (1996). Motor development and physical education. In B. Stratford & P. Gunn (Eds.) New approaches to Down syndrome. Pp 309-340. London: Cassell.

3. Weeks, D.J., Chua, R. & Elliott, D. (2000). (Eds.) Perceptual-motor behaviour in Down syndrome. Champaign, IL: Human Kinetics.

4. Shumway-Cook, A. & Woollacott, M. H. (1985). Dynamics of postural con-trol in child with Down syndrome. Physical Therapy, 65 (9), 1315-1322.

5. Sacks, B. and Buckley, S. (2003). Motor development for individuals with Down syndrome - An overview. Portsmouth, UK: The Down Syn-drome Educational Trust,

6. Cunningham, C., & Sloper, P. (1978). Helping your handicapped baby. London: Souvenir Press.

7. Berry, P., Andrews, R.J., & Gunn, V.P. (1980). The early development of Down’s syndrome in infants. Final Report to National Health and Medical Research Council. St Lucia, Qld: University of Queensland, Fred

141





and Eleanor Schonell Educational Research Centre.

8. Winders, P.C. (1997). Gross motor skills in children with Down syn-drome. Bethesda, MA: Woodbine House.

9. Latash, M.L. (2000). Motor coordina-tion in Down syndrome: the role of adaptive changes. In D.J. Weeks, R. Chua & D. Elliott (Eds.) Perceptual-motor behaviour in Down syndrome. Pp 199-224. Champaign, IL: Human Kinetics.

10. Mauerberg-de Castro, E. & Angulo-Kinzler, R.M. (2000). Locomotor patterns of individuals with Down syndrome: effects of environmental and task constraints. In D.J. Weeks, R. Chua & D. Elliott (Eds.) Per-ceptual-motor behaviour in Down syndrome. Pp 71-98. Champaign, IL: Human Kinetics.

11. Butterworth, G. & Cicchetti, D. (1978). Visual calibration of posture in normal and motor retarded Down syndrome infants. Perception, 7, 513-525.

12. Jobling, A. (1999). Attainment of motor profi ciency in school aged children with Down syndrome. Adapted Physical Quarterly, 16, 344-361.

13. Anson, J.G. & Mawston, G.A. (2000). Patterns of muscle activation in simple reaction-time tasks. In D.J. Weeks, R. Chua & D. Elliott (Eds.) Perceptual-motor behaviour in Down syndrome. Pp3-24. Champaign, IL: Human Kinetics.

14. Welsh, T.N. & Elliott, D. (2000). Preparation and control of goal-directed limb movements in persons

with Down syndrome. In D.J. Weeks, R. Chua & D. Elliott (Eds.) Per-ceptual-motor behaviour in Down syndrome. Pp 49-70. Champaign, IL: Human Kinetics.

15. Almeida, G.L., Marconi, N.F., Tor-toza, C. Ferreira, M.S., Gottlieb, G.L. & Corcos, D.M. (2000). Sensori-motor defi cits in Down syndrome: implications for facilitating motor performance. In D.J. Weeks, R. Chua & D. Elliott (Eds.) Perceptual-motor behaviour in Down syndrome. (Pp 151-174). Champaign, IL: Human Kinetics.

16. Dulaney, C.L. & Tomporowski, P.D. (2000). Attention and cognitive-skill acquisition. In D.J. Weeks, R. Chua & D. Elliott (2000). (Eds.) Perceptual-motor behaviour in Down syndrome. Pp 175-198. Champaign, IL: Human Kinetics.

17. Peran, S., Gil, J.L., Ruiz, F. & Fern-andez-Pastor, V. (1997). Development of physical response after athletics training in adolescents with Down syndrome. Scandinavian Journal of Medicine and Science in Sports, 7, 283-288.

18. Connolly, B.H., Morgan, S. & Russell, F.F. (1984). Evaluation of children with Down syndrome who participated in an early intervention programme: second follow up study. Physical Therapy, 64 (10), 1515-1519.

19. Harris, S.R. (1981). Effects of neu-rodevelopmental therapy on motor performance of infants with Down’s syndrome. Developmental Medicine and Child Neurology, 23, 477-483.

20. Ulrich, D.A., Ulrich, B.D., Angulo-Kinzler, R.M. & Yun, J. (2001).

Treadmill training of infants with Down syndrome: evidence-based developmental outcomes. Paediat-rics, 108 (5), e84.

21. Winders, P.C. (2001). The goal and opportunity of physical therapy for children with Down syndrome. Down Syndrome Quarterly, 6 (2), 1-4.

22. Charlton, J.L., Ihsen, E. & Lavelle, B.M. (2000). Control of manual skills in children with Down syndrome. In D.J. Weeks, R. Chua & D. Elliott (Eds.) Perceptual-motor behaviour in Down syndrome. Pp 25-48. Cham-paign, IL: Human Kinetics.

23. Heath, M., Elliott, D., Weeks, D.J. & Chua, R. (2000). A functional sys-tems approach to movement pathol-ogy in persons with Down syndrome. In D.J. Weeks, R. Chua & D. Elliott (Eds.) Perceptual-motor behaviour in Down syndrome. Pp 305-320. Champaign, IL: Human Kinetics.

24. Campos, J.J., Anderson, D.I. et al. (2000). Travel broadens the mind. Infancy, (2), 149-219.

Fine motor skills in children with Down syndrome: A guide

for parents and professionals. By Maryanne Bruni (1998).

Woodbine House.

ISBN: 1-890627-03-8.

Gross motor skills in children with Down syndrome: A guide

for parents and professionals. By Patricia Winders (1997).

Woodbine House.

ISBN: 1-933149-81-6.

Motor development resourcesThe following items are available from The Down

Syndrome Educational Trust’s Resources brochure:

The Down syndrome nutrition handbook - a guide to promoting healthy lifestylesJoan E Guthrie Medlen

Published by Woodbine House, Bethesda, MD, 2002. £17.50

ISBN: 1-89062-723-2

This book is an excellent resource for both parents and practitioners. It covers issues across the age range, starting with breastfeeding then covering diet and healthy eating across the age range to adult life. Joan sets out the principles for a healthy life style including healthy eating and healthy activity. She gives clear information on how to encourage healthy eating, reflecting her experience as a dietician and as a parent. Parents will be encouraged by all the tips that reflect her understanding of daily family demands and of children’s behaviour. She devotes a large part of the book to activities that we can use to teach children, teenagers and adults to make healthy choices and to take charge of their own healthy lifestyles. This book will be a resource to families for many years and should be in all professional libraries.

Sue Buckley

available from The

Down Syndrome

Educational Trust

142



As many of our readers will know, the challenges that children with

Down syndrome face when learning to talk and to read, and the links between the two activities, have been a core interest of psychologists working for The Down Syndrome Educational Trust since 1980. Therefore, articles and comment on these two topics are featured in most issues. The ability to communicate

plays such a signifi cant part in the everyday life of all individuals that

we always stress the importance of helping children to progress as fast as they can with speech and language learning. We expanded on the importance of language for cognitive development (learning, thinking, reasoning, remembering) and social development (making friends, sharing worries, daily interactions and self-control) in an article on Speech and Language Therapy in issue 2 of this volume of Down Syndrome News and Update. [1]

Teaching reading to

teach talkingWe have promoted the use of read-

ing activities in order to develop both speech, language and literacy skills for many years and the fi rst article in this section is by Honor Mangan,

sharing her expe-rience of using every opportu-nity to use print to develop the spoken language of Ynez, aged 6 years. Honor is a resource teacher

in Ireland supporting the inclusion of children with special educational needs in mainstream schools. In issue 2 of this volume of Down Syndrome News and Update we pub-lished several accounts by parents of

the positive benefi ts of the reading activities that they had carried out in the preschool years at home.[2] They each stressed the way in which reading activities had helped their child’s spoken language to progress. It is good to be able to add a teacher’s account of the benefi ts of the same approach during the school years.

Many parents and teachers are daunted by the idea of creating read-ing activities for their children that are right for their level of language development and that will begin to move their vocabulary and sentences forward. However, we hope the case examples that we are publishing will encourage everyone to try this approach as we know it really does help.

It is not too late to apply the same principles at junior or secondary school. Helping children to write down, in simple sentences, what they have been learning or what they have been doing or what they would like to tell others – will help at every age. Some children with Down syndrome will become competent readers and writers, with only a little support needed, but most children will need support to write down their sentences and to read them. The benefi ts for spoken language will be there even when children need full support to read and write. There is guidance to help parents and teachers in all the DSii books on reading and writing and we hope to be developing a pack of materials to support this language through reading approach for preschool and primary children later this year if we can obtain the funding.

Learning more than one

languageIn the last issue, we published a

review of the information available on bilingualism and the effect of being exposed to more than one language on the language progress of children with Down syndrome.[3]

This has led to some correspondence

and contributions from readers, one parent and one practitioner, which we are pleased to publish in this section. It is clear that there is still much to learn about the way in which children experience more than one language. Lorraine Sanda indicates that her daughter Vanessa has demonstrated the same progress in understanding Spanish spoken by her father as her two brothers, supporting the research that we published in the last issue. Etta Wilken suggests that we need to take account of the different patterns of language experience that children might receive, based on her survey of parents in Germany. She also makes the important point that there will be wide variation in progress in one or in two languages in rela-tion to children’s abilities as well as their language experience. The case examples that Etta provides, and her conclusions, indicate the need for more research. Such research is diffi cult to organise and therefore the sharing of family experiences is an important way to increase our knowledge at the present time.

Please do contribute your own experiences on any aspect of speech, language and literacy teaching or any observations of the progress made by individual children.

Editor

References1. Buckley, S. & LeProvost, P. (2002).

Speech and language therapy for children with Down syndrome. Down Syndrome News and Update, 2 (2), 70-76.

2. The signifi cance of early reading for children with Down syndrome. (2002). Down Syndrome News and Update, 2 (1) Five articles on reading, four case studies and a research sum-mary. pp 1-10.

3. Buckley, S. (2002). Can children with Down syndrome learn more than one language? Down Syndrome News and Update, 2 (3), 100-102.

Back issues and reprints are available from the Trust.

Language and literacyContinuing to explore language and literacy issues

It is not too late to apply the

same principles at junior or

secondary school

Please do contribute your

own experiences on any

aspect of speech, language

and literacy teaching or any

observations of the progress

made by individual children

Language and literacy


143



Teaching language through reading to a child with Down syndrome


I am a Resource Teacher working with special needs pupils in a

mainstream school for the past three years. In September 1999 I started in this job and from then I had a pupil, Ynez, with Down syndrome. I still work with Ynez. Ynez was 6 years old and diagnosed with a moderate learning disability. Ynez had attended play school for 2 years. She knew all her letter names, numbers and colours. She had an extensive single word vocabulary.

Where was I going to start? She was ready for reading. I consulted the class teacher. We decided that the class reader ‘Hip, Hip, Hippo’ was unsuitable. At this point I started reading about Down syn-drome. I got my hands on ‘Meeting the Educational Needs of Children with Down’s Syndrome’ by Sue Buckley and Gillian Bird, and some things here struck me, and I quote ‘for reading to be used most effec-tively to teach language, it is better, if you can make your own materials that relate to the child’s interests and needs rather than rely on published materials’. This was the beginning of my work with photographs and a digital camera.

I got photographs from Ynez’s home. We talked about them, wrote about them. I used simple sentences e.g. ‘Look at Dad. I see Dad.’ It was important at this stage that I used the same language as was being used at home: school clothes as opposed to uniform, etc. I linked in with the class teacher and based my reading on what was being done in the Junior Infant classroom. When the class was reading ‘Hippo is in the water’ we were reading ‘Ynez is in the bath.’ I used the same method of teaching reading as with other pupils: matching word to picture, word to word, word box, etc.

All this material was compiled inpersonalised book format for Ynez – ‘Ynez’s Book’.

Soon it became apparent that Ynez was reading well with clear pronun-ciation. I decided to zone in on her visual perceptual ability in order to improve and enhance her language skills. Again I quote ‘reading enables children to practise sentences they cannot yet generate by themselves, improving articulation and produc-tion skills,’ and ‘many children can articulate words more clearly when they read them than when they spontaneously say them.’ It was then I started using a digital camera in everyday situations.

I based reading and language on happenings in Ynez’s day in school. I photographed her schoolbag, her lunch box, her pencil case, her ‘new glasses’, and so on. Firstly, I would talk around the subject, e.g. my

lunch box. Daily we would take outher lunch box and get her to tell me what was in it. I then photographed the box, put the image on the com-puter screen. Here again we would talk about it. Finally, I would print out the image and write about it.

I continued doing this every day with emphasis on Ynez talking about the pictures and then reading. Sometimes this work was planned and other times it just depended on what was going on that day. One day she brought fl owers to me. The digital camera is particu-larly useful in situ-ations like this. I photographed her with the fl owers and immediately downloaded the

I have one orange in my lunch box.

I have green grapes in my lunch box.

I gave flowers to

Honor.

‘Thank you, Ynez’ said

Honor.

I put the flowers in

water.

Teaching language through reading to a child with Down syndromeHonor Mangan Resource Teacher for Special Needs Pupils, Scoil Bhride, Mildeton, Co. Cork, Ireland

144



Teaching language through reading to a child with Down syndrome


image onto the computer and wrote about it. Here within minutes she was able to read about what had just happened.

I also found the camera invaluable for developing social skills. Daily we went to the School Secretary, requested a book and responded appropriately. This activity was pho-tographed and recorded. Through reading these responses Ynez’s spoken vocabulary increased from two to three words.

I continued photographing Ynez at P.E., in the playground, in the school play, singing, skipping, etc. All these images were supported with simple sentences. The most noteworthy

improvement is in clarity of speech. This was very apparent as Ynez fi rst tried to read the word ‘Goofey’. After much repetition the word became perfectly clear. Ynez now had two personalised books.

In September 2002 I was wonder-ing how to make further progress. Being back at school with new teacher, new classroom, etc. pro-vided some material. After consul-tation with the Speech Therapist we decided to continue on with what I was doing with more emphasis on use of language. Again we decided to use everyday situations for reading. To this effect I gave the camera to the parents and they photographed Ynez at home: ‘I brush my hair’, ‘I put on my clothes,’ etc. We are still working on this.

I have often been asked ‘Does Ynez understand what she is read-ing?’ The answer to this is clearly ‘yes’. If she has diffi culty with a word she looks at the pictures for clues. When, for example, I ‘mixed-up’ pic-tures and text Ynez has successfully matched them. I have also used split sentences, and ‘mixed-up’ sentences, etc. I have no doubt she understands what she is reading. I also have a list of commands for Ynez to do daily: ‘Take out your reading book,’ ‘Write your name on the whiteboard’, etc. Ynez successfully carries out the appropriate task.

I fi nd the camera very useful for linking up with home. I download the images onto a fl oppy or CD and send them home so that the parents can relate to what is going on in school.

One of the advantages of the dig-ital camera is that it’s use is immedi-ate. I can take a picture and have it on the screen within seconds. I can move it around, enlarge it, delete it, put script with it, print it, etc.

Now Ynez has progressed to writing for meaning. Since October 2002 Ynez has been writing on the computer daily. I insert a pic-ture of Ynez at home, at school, or wherever

and then Ynez writes appropriate sentences. Ynez can write up to 5 sentences unaided.

There is no doubt that the reading processes as described above have brought about a marked improve-ment in Ynez’s speech. She is now willing to use language in everyday situations. She requests items and greets people appropriately. Her expressive language is developing alongside her reading. She is reading accurately and with understanding. Reading for meaning for Ynez has been an attainable goal.

Further, teaching Ynez to read has been effective in improving both her ability to think and reason.

I’m enjoying this challenge with Ynez and will continue to develop ideas around the use of technology to improve language.

As a Resource Teacher I withdraw Ynez from the classroom and work with her for one hour daily.

Honor Mangan

e-mail:[email protected]

I brush my hair

I write on the computer

Ynez with friends

‘Good Morning,

Gillian’.

‘Book please, Gillian’.

‘Thank you, Gillian’.

I can paint

145



Can children with Down syndrome learn more than one language?


I was really interested in your article on children with Down syndrome

learning more than one language. This subject has fascinated me for some time, ever since we were told at Chelsea and Westminster Hospital shortly after Vanessa’s birth (seven years ago) that it would be best not to bring Vanessa up bilingual. I should add that, at this time, no one knew that Vanessa was to go on to have severe health problems in the fi rst year of her life, leaving her with considerable breathing diffi culties and a severe/moderate hearing loss requiring bilateral hearing aids. Factors which have of course contributed to her lack of speech. Although Vanessa is a very competent Makaton user and a good communicator, she has little if any intelligible speech. Nevertheless, she is currently in P2 at mainstream school and has convinced her teachers that she is capable of understanding what she is reading and is currently working on making her own sentences with the words she can read and understand.

As you know my husband is Span-ish and speaks in Spanish to all three children when he is with us at week-ends. However, similar to the advice in your article he has always used English when he has been working with Vanessa on targeted language activities such as reading, sound cards, etc. He also uses Makaton to support both Spanish and English. Vanessa can understand the basic Spanish phrases Manuel uses with her around the house e.g. “Give me a kiss”, “let’s go”, “where is …?” The key for me is that whether the language is in Spanish or English it has to be at her level of comprehen-sion. We could teach her a new word in Spanish or English and she could learn and understand it as well as learn who to use it with. We would just have to apply the same rules i.e. lots of repetition, lots of context, pictures, etc. In fact, the same also applied to her learning some BSL. She had a teacher for the hearing impaired who used BSL instead of

Makaton. Some of the signs are dif-ferent and Vanessa could understand the teacher’s BSL signs and knew which ones to change from Makaton to BSL when communicating with her.

The other interesting thing is that Vanessa’s two brothers, who are four and two years, follow the same pattern of learning a second or subsequent language as Vanessa. When they hear a new word in Span-ish, they have to hear it many times, albeit much less than Vanessa, before they start to use it spontaneously and it becomes natural to them. The younger boy is at the stage of hearing a Spanish word and copying it in speech. The older boy can now produce spontaneous Spanish in situations which are very familiar to him. They followed the same pattern in learning Makaton which for them was easier to produce spontaneously than spoken language just as it was for Vanessa.

In my opinion, Vanessa’s facility for learning Spanish is no different from her brothers’. She just needs an extensive level of input whether it be in Spanish, Makaton or English. She also has the same severe diffi -culty in producing speech whether it be in Spanish or English.

Can children with Down syndrome learn more than one language?Lorraine SandaParent - Stirling, Scotland

Vanessa with her

Spanish father,

Manuel, at home in

Scotland

Vanessa, with brothers Martin and

Charlie, in Spain

146



Bilingualism in children with Down syndrome in Germany


Introduction

It is often reported by parents whose fi rst language is not

German that they are encouraged to speak only German with their child with a disability. Most parents fi nd this an emotional burden, not

to be able to talk to their child in their mother tongue. This is especially diffi cult when the fi rst language is used with brothers and sisters, as the child with a disability is not included in the daily communication of the

family. With no experience of the fi rst language, the child is presented with German through early tuition and therapy.

While taking into account the differences in individual children and families, it is not necessary to sacrifi ce a bilingual upbringing – however, the structural circum-stances of acquiring a language are important.

I have received many reports from parents of children with Down syn-drome regarding their experiences with a second language, and have sum-marised a selection of these below:

Parents who were both Turkish-

speaking spoke only German with

their son until he was four years

old, when a speech therapist

recommended that they spoke

German and Turkish alternately

with him. He is now nine years old

and understands both languages

well. However, he has great dif-

ficulties in speaking, and mixes

both languages. He uses a lot of

facial expression and gestures to

communicate. The result for the

child in this example that there is

no clear division between the two

languages.

A Turkish girl, who grew up speak-

ing only Turkish at home, had

started talking at about four and

a half years old, and could com-

municate well in Turkish when she

started school. However, because

she was at school for the whole

day, her first language became

of secondary significance – many

Turkish words were forgotten

and replaced by German words.

There was ‘confusion’ in the lan-

guage. When the first language is

not solid enough, it can be repressed

by the second language.

A German family living in the

French area of Switzerland

brought their son up to speak

German, but he also received

early tuition in French. At 30

months, he understood a lot of

German words and answered

questions with signs. At three

and a half, he began to speak his

first words in German. Through

playschool, and due to different

therapeutic treatment by the age

of four, he had acquired more and

more French. At five, he under-

stood a lot in both languages. At

seven, depending on the situation,

he spoke French. At eleven, he

communicates well in both lan-

guages, with French dominant due

to school, mostly using one-word

sentences in both languages. Lan-

guages were acquired in sequence,

the speaking of the second language

coming relatively early.

A Turkish mother wrote that

she spoke only Turkish with her

daughter from the beginning, even

though she was advised against

it by early teaching professionals

and the speech therapist. The

reason for her decision was that

her husband could not speak good

German, and the grandparents

none at all. She was of the opinion

that it would be early enough for

her daughter to learn German

when she started at playschool or

school. The girl is now ten years

old and speaks both languages

equally well. The positive acquisi-

tion of the first language in the

family led to a good basic concept

and made it easier to learn the

second language.

A French mother and German

father, living in Germany, spoke

in both ‘person-related’ languages

to their son from birth. When he

was 20 months old they changed

to sign language, but also began

to speak more German in order

to encourage him. At four years

he could speak a lot of German

words, and could also understand

French well. In this way he could

correctly answer in German

questions asked by his French-

speaking grandmother. The signs

had taken over an important

role in understanding. At five

years he started to use his first

French words, particularly when

they were easier to pronounce

than German, for example ‘lapin’

for ‘Kaninchen’ (rabbit). At eight

years, he speaks good German,

understands French well, and his

speech is beginning to improve.

He was taught to understand both

languages from birth; however, when

he started to speak, one language

took over.

Bilingualism in children with Down syndrome in GermanyEtta Wilken

University of Hannover, Germany

While taking into

account the differences

in individual children

and families, it is not

necessary to sacrifice a

bilingual upbringing

It is important for the child

that there is a clear ‘person-

related’ division made

between the two languages

147



Bilingualism in children with Down syndrome in Germany


In a family where the mother is

Danish and the father German,

the mother spoke Danish and

the father spoke German to their

daughter from the beginning.

The girl is now eleven and can

speak both languages at the same

level, presumably according to

her appropriate ability. Here it is

apparent that both languages are

‘person-related’.

To conclude, here is a short sum-mary on the speech development of a man with Down syndrome who is now 22 years old:

His mother is English and his father

German. In the first years of his

life they spoke only German with

him: at the age of three, he spoke

about 600 words and was able to

build sentences with three to four

words. When he was three and a

half, he visited England and spoke

his first English words. His parents

continued to speak German with

him at home until he was six, how-

ever his communication in English

expanded enormously, partly due

to them reading English stories to

him. They visited England again

when he was seven, and he began

to speak short sentences in Eng-

lish. At the same age, his mother

began, in a playful way, to teach

him to read in German. The family

lived for a year in the USA when

the boy was ten, and he had no

problem in understanding or

being understood. He also found

school there more interesting

than in Germany. Today he can

speak German and English well,

and has very clear pronunciation.

He can read German well, but is

not so confident in reading Eng-

lish. This story shows a very positive

course of development – in acquiring

the first language it was clear that

this boy started to speak fairly early.

The second language was context-

bound.

Judging from the different expe-riences of parents of children with Down syndrome who have learnt two languages relatively well, one can recognise some similarities:• It seems to be important that

children understand and speak the language that has prime sig-nifi cance in their fi rst years, e.g. children of Turkish parents living in Germany learning Turkish as their fi rst language; children of German-speaking parents living in a foreign country learning German as their fi rst language. However, the children hear the second language and are in a position to understand it, while it is not absolutely necessary for them to speak it. It is obviously no problem when, for example, German is spoken to Turkish chil-dren in early tuition or in physi-otherapy. It appears to be very diffi cult for some children to have to learn to speak two languages from the beginning.

• When the child has learnt the essential basics in one language, he or she starts to be curious about the second language, for example when visiting relatives in a foreign country, and begins to ask about and repeat indi-vidual words. The same is also reported from children attending a kindergarten or school with a foreign language. It is therefore important for children with Down syndrome to learn one language at a time – it makes it easier for them to remember how a word is spoken. Sign language can also have a positive effect, working as a bridge between the two lan-guages.

• For children whose family members have different mother tongues, it is important that everyone is encouraged to talk to the child in their own language. The fundamental care, tender-ness, affection and essential emotional meanings come much easier in the mother tongue. It is important for the child that there is a clear ‘person-related’ division made between the two languages. When the child begins to speak, at about eighteen months to two

years old, it is recommended that one language is used when pointing to and naming things and encouraging the child to imitate – the second language can be learnt through songs, little games, etc., so that the child learns to understand it without having to speak it. They start to use the second language sponta-neously, usually between the ages of fi ve and seven.

• There are some children with Down syndrome who learn two languages simultaneously, and can speak them better than other children who only speak one language. There is a vast differ-ence in the bilingual abilities of children with Down syndrome: some children can only speak some words in the fi rst language and can only partly understand the second language; some have problems separating the two languages; some master the fi rst language well and can be under-stood in the second; others have the ability to speak and even to read both languages well.This conspicuous heterogene-

ity does not depend on the condi-tions in which the languages were acquired, as much as on the different individual abilities of the children themselves.

Professor Etta Wilken

Allgemeine und Integrative Behindertenpädagogik

Universität Hannover

Institut für Sonderpädagogik

Bismarckstr. 2

30173 Hannover

Tel: 0511 / 762 - 8361

Fax: 0511 / 762 - 8408

E-mail:

[email protected]

They start to use the second

language spontaneously,

usually between the ages of

five and seven

Recommendation for a second language in the

upbringing of children with Down syndrome

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Friendships in teenage years


In the last two issues, we have published articles on progress

in teenage years and, in both, the fi ndings have highlighted the need to support the development of friendships. Most children with Down syndrome seem to be well included and to have friends during their primary school years, but friendships in teenage years can be more of an issue. A letter recently received from Aimee Bertram’s mother and my reply to her illustrate this issue. It highlights how well Aimee has made the move into secondary school but also her mother’s growing concern about her range of friendships.

“Aimee is enjoying secondary school immensely and has made new friends. The school has 1600 pupils - a far cry from the village primary school she attended from the age of 4 which has less than 200. She auditioned for a part in the school play and the teachers said they had to include her for her obvious enthusiasm! She sings in the school choir (again what she lacks in melody is made up for in eagerness!) The physical size of the school is fairly daunting - I can’t fi nd my way around, but Aimee’s friend told me the other day if she’s ever lost, she asks Aimee saying “Aimee knows her way around the school like the back of her hand!” We have not heard of any incidences of bullying as yet, in fact quite the reverse. I have noticed many of the pupils, from all years saying hello to her. The work is differentiated very well so that homework is within her capability/understanding. She has a different LSA for each subject which also works well.

On the downside, Aimee has developed a couple of imaginary friends. She acknowledges they are imaginary, but to me it indicates that she may is feeling a little iso-lated socially. I would really like for her to have some friends with special needs but I’m not sure of how to go about this. If you’ve any ideas I would be grateful”.

Annette Bertram

“On the imaginary friends front, this is quite a common issue with more than half – probably some 70% of teenagers and adults either talk-ing to themselves at times, engaging in solitary pretend play and talking at the same time, or actually having imaginary friends. We do think it refl ects some degree of loneliness but it is also an emotional release at times, so is best accepted. Content of the talk can be about events that have worried the person and the sort of things they might well share with a close friend if they had one. I am just writing a brief piece on friends and strategies to increase them in Down Syndrome News and Update, and I will be asking for ideas from families that have worked. Some

families have organised activities such as swimming and going to Mac-Donalds for three or four teenagers with Down syndrome from different schools by working with the other parents. Some have invited other teenagers for sleep overs or family supervised activities rather than organising a club – one local group of parents keep a drama and dance group running for the children from local mainstream schools and broth-ers, sisters or friends. The Mencap or similar ‘all disability’ clubs may be rather daunting to someone who has not been in special school. It is clear to us that this is an area where we still have to work at the issue as par-ents – also secondary schools need to be asked for some imaginative solu-tions as the teenagers themselves will have ideas about how to include those with disabilities if asked to think about it. I am hoping that we can run this as a topic for exchang-ing views in the way we are doing on bilingualism as we have had cor-respondence following our article in the last issue”.

Sue Buckley

We need to share ideas on

two issues:

• increasing friendship

opportunities in and out

of school with typically

developing peers, and

• increasing opportunities

to meet peers with similar

levels of learning disabilities

for those in mainstream

education.

Please send us your ideas

and experiences as we will

have a feature on friendships

in the next issue.

Friendships in teenage years

Aimee and friends at

primary school

Aimee at secondary

school

149



EDSA news

European Down Syndrome Association news


To round off the celebrations of the

25th anniversary of the German asso-

ciation Arbeitskreis Down-Syndrom

e. V., a meeting on medical issues

was held in the inspiring surround-

ings of Bethel and the Mamreschule.

This suburb of Bielefeld was founded

during the 19th century with a view

to house persons with epilepsy as

well as other mental or psychological

disorders, the homeless or addicts. It

offers out-patient and in-patient care,

school education, vocational training,

jobs or a home, state-of-the-art

research facilities, etc. It is meant to

give people with problems some of

the things they need in order to find

their way back into ‘normal’ life:

• being accepted and recognized

with all one’s weaknesses or

deficits

• living in a stable and caring

environment

• relying on daily routines, oppor-

tunities to communicate and to

be listened to

• experiencing new challenges

• doing a meaningful job

• enjoying leisure activities

• developing social skills and

behavioural strategies with a

view to become as autonomous

as possible.

The Mamreschule offered the

venue, technical equipment, deli-

cious local dishes and exceptionally

kind and gentle service by its pupils.

After an interesting tour of some

institutions and facilities, which

gave the EDSA Board members an

opportunity to bring home their

first Christmas presents (wood carv-

ings and hand made gifts from the

woodturning workshop), and a press

conference during which the TV sta-

tion ARTE got some insight into the

activities of EDSA, a meeting of the

Board was held. This concentrated

on several documents to be issued

by EDSA, on activities relating to the

Year of the Disabled in 2003, and on

the amendment of the Constitution

amongst others.

It is a longstanding habit of EDSA

to combine, if possible, a working

session with a professional meet-

ing or a conference for the general

public in order to pursue its policy

of creating a bond between all those

involved in Down syndrome: parents,

professionals, friends, as well as to

exchange knowledge and experi-

ence, and to circulate information on

Down syndrome.

Medical Conference reportMonique Randel-TimpermanEuropäische Down-syndrom Assoziation

“I long for a society whose symbol is not the elbow but the open hand… For this reason, I am glad that Bethel has become, in Ger-many and throughout the world, a symbol of true humanity and at the same time a forum of research and scientifi c knowledge and a place where people with and without disabilities – or even better, people with disabilities and those who do not yet know or feel their disability – can live together.”

Dr. Johannes Rau, President of the German Federal Republic and friend of the Bodelschwingsche Anstalten, Bethel; he wishes the ‘normality of segregation’ to become the ‘normality of integration’.

Meeting of the Board of EDSA on 29 November 2002

The objective of EDSA is to promote the complete development of persons with Down syndrome, regardless of racial, linguistic, religious, philosophical or political considerations. Any initiative which contributes to this end from the viewpoint of health care, education and instructions, and human development will be encouraged. The aim is to improve their health, training, adaptation to and inte-gration in society so that each person can, to the extent that he or she desires, lead as normal a life as possible, within the framework described in the United Nations Declarations on Human Rights, and on the Rights of Handicapped Persons; in the European Convention on Safeguards of the Fundamental Rights and Liberties; and in the Constitution of his or her country.

150



EDSA news



After a welcome by local dignitaries, the conference was

opened by Dr Juan Perera, President of EDSA. He proposed the Identity Document for persons with Down syndrome, based on current views on the condition, and promoting values relating to their fundamental rights, personality, life in dignity, equal opportunities, inclusion, empowerment, respect for diversity and support of their families. This reference paper establishes the radically changing knowledge and attitude towards people with Down syndrome and stresses their specifi city, individuality and equality as European citizens.

Dr Perera also took the chance to describe his visions for the future, starting with 2003, the Interna-tional Year of Persons with Disabili-ties, emphasizing the challenges for all those concerned.

Dr Rasore, Vice-president, pro-posed EDSA’s Healthcare Guidelines, a preventive checklist of medical care from birth onwards. Every individual has the right to good health care as a necessary condition to a fulfi lled life

especially during adulthood. This checklist, including specifi c recom-mendations for educational and developmental needs according to state-of-the-art knowledge, should be useful for parents, physicians and other professionals alike in order to tailor medical and therapeutic intervention to the individual needs of the person with Down syndrome throughout his or her life.

In children, the proposed pro-cedures aim at the optimisation of the rehabilitation and integration process, whereas in adulthood they should help to acquire abilities and quality of life.

Prof. Seidel of the Bethel Insti-tutions, however, admitted that all was not well for people with chronic diseases, mental or psychological disorders and complex dependency needs in Germany. In his Critical Perspective, he outlined the present unsatisfactory health care regula-tions, which often leave people with chronic conditions out in the cold. He feared that with the coming modifi cations to the Health Care Law, proposed by the current federal government, the prospects for the future were even darker. With a rare clarity (and courage) he pointed at some of the reasons for the general disinterest in people with multiple disabilities and needs among the authorities and the professionals, and called for parents to support efforts by the main professional associations for people with dis-abilities to turn the tide of decision making and public opinion.

His criticism was specifi cally directed towards an entirely inad-equate care system for adults with learning and multiple disabilities. In

general, they only have the regular health care system at their disposal, which does not take into considera-tion the higher competence and addi-tional time and resources needed by health professionals when treating these patients. Moreover, he pointed out that only a few large institutions for in-patients with disabilities still had integrated medical and other therapeutic services. These units were jeopardised as personnel costs and overheads were inadequately fi nanced and not part of the regional care systems. As these integrated services were only at the disposal of the residents of an institution – and only a small number of people with learning and multiple disabilities still live in institutions – the vast majority of persons concerned must rely on the Regular Health Care System, which shows a number of important defi cits relating to their specifi c needs.

Prof. Seidel also feared that, if they were not incorporated into the regular health care services on a regional level, and fi nancial sup-port was not guaranteed – from an economical point of view, this would certainly make sense – the loss of integrated residential medical and therapeutic facilities would lead to the disappearance of expert knowl-edge and competence, especially, as the Regular Health Care Scheme lacks the professional competence to deal with the dependency needs of the target group. During their train-ing nurses, physicians, occupational therapists, psychologists, etc. in Germany are hardly ever confronted with the special needs of people with learning and multiple disabilities. The consequence is a defi cit in spe-

Conference on Medical Issues: a European PerspectiveBielefeld-Bethel, 30 November 2002

151



EDSA news



cialised knowledge, which extends to the programs of continuing educa-tion for health professionals. As an additional consequence, research in the medical, health and nursing sci-ences relating to people with mental and multiple disabilities remains of little importance in Germany. This research defi cit is on the one hand, an immediate consequence of the negligence of the target group on a political level, but on the other hand, is a vicious circle leading to lasting negligence. There is only a very, very limited number of health profession-als who are engaged in the treatment and care of people with learning or multiple disabilities.

Prof. Seidel deplored the inad-equate professional training espe-cially in relation to the specifi c communicative needs of people with learning and multiple disabilities, since these persons often have lim-ited opportunities to discuss their health problems, and to take an active role in their treatment.

The reasons for this worrying situ-ation were to be found, according to Prof. Seidel, in the lack of political debate and interest in this topic, and especially, in important structural obstacles of the German health system. The general, low opinion of this subject among health profes-sionals is part of the prejudices of society against individuals with mental retardation.

Luckily, doctors who are involved in the treatment of people with learning or multiple disabilities are acquiring their own professional identity. They have united in order to identify and develop common profes-sional goals, strategies for action and quality standards.

Dr Huber, neurologist and psy-chiatrist at the Bethel Clinic, talked about Epilepsy in Persons with Down Syndrome, explained which type of seizures could be expected in the different age groups, how they could be treated and what the pos-sible prospects were.

Three types of epilepsy seem con-nected with Down syndrome:• Infantile epilepsy seems to be

more frequent than in the general

population but less common than in other forms of learning disability. Infantile spasms in children with Down syndrome respond rather well to therapy. They may be more benign and rarely develop into more severe syndromes or cognitive deteriora-tion.

• On the contrary, epilepsy later in life is far more frequent, with generalised tonic-clonic or myo-clonic fi ts. It may also be a sign of dementia or Alzheimer disease, in which case 75 % of the patients develop epilepsy.

• Refl ex epilepsy, triggered by the startle response to specifi c stimuli such as light, sudden noises, and other visual or tactile stimuli.Specifi c neuroanatomical aspects

of the brains of individuals with Down syndrome, such as hypoplasia and altered neuronal and dendritic density, may account for the prone-ness to epileptic fi ts.

Furthermore, the gene for pro-gressive myoclonus epilepsy has been identifi ed on the Down Syndrome Critical Region of chromosome 21. The imbalance of this gene product may well lead to a higher incidence of myoclonic fi ts in individuals with Down syndrome.

Epilepsy in this population should be treated according to standard pro-cedures, with the necessary caution where certain risks are concerned but without unnecessary restric-tions.

After an excellent lunch, prepared and served by the pupils of the Mam-reschule and based on local cuisine, the conference participants were offered a special treat: The Insepara-bles - a Ballet of the Chromosomes, by local children. We learned all about the longing of DNA to mingle with its counterpart, about nondis-junction and the peculiarities of the additional chromosome 21 in a play-ful way. What a charming view of an ‘accident of nature’ as a piece of art and a reason for happiness, not for sorrow. The audience thanked the dancers, who told the story of Paul, Paula and Pauline – the three small chromosomes, who did everything a

little bit more slowly than the others but liked so much to huddle up together and had so much fun – in English, with a standing ovation.

Dr Mara Dierssen from Barce-lona, who presented her research on mouse trisomies as a model of Trisomy 21 in humans and its impli-cations for educational and behav-ioural intervention, declared that from now on, the pieces of tangled DNA would never look the same to her again.

In her paper, she held that the spe-cifi c phenotype of Down syndrome is related to the complex imbalance of gene products or even to the overexpression of specifi c genes. A simple way of counteracting their negative impact, e.g. on learning and behaviour, is not likely. How-ever, a better understanding of the phenotype-genotype relation can help to explain the pathophysiology of the syndrome, and to fi nd ways to improve or circumvent some of its negative consequences.

Several murine models (trans-genic animals overexpressing single genes, combinations of genes, yeast artifi cial chromosomes, bacterial artifi cial chromosomes and knock-out mice or mice with partial triso-mies) may prove useful in detecting the regulations underlying a grow-ing number of genes under scrutiny.

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EDSA news



These results can then lead to better understanding of the biochemistry, physiology and molecular pathogen-esis of Down syndrome and to evalu-ation of the use of pharmacological, genetic or environmental, therapeu-tic remedies.

Dr Dierssen discussed amongst others the Ts65 Dn mouse and com-pared its response to environmental stimuli with other murine models, with a different genetic predisposi-tion. This model shows that experi-ence and a complex environment in the early period of life correspond with a higher spine density and more complex dendritic arborisation and length of cortical dendrites. All of which seems to indicate that neuro-nal circuits can be modifi ed at mul-tiple levels to optimise information processing and storage of experience and knowledge. Thus, environmen-tal enrichment, at least for these mice, may be part of the solution to cognitive defi cits and, enhance per-formances in memory, visual acuity and learning tasks.

Dr Maria Šustrová from Brati-slava, discussed Immunological Issues and Recent Research con-ducted at her clinic. Immune defi cits affect people with Down syndrome in a rather variable way. In spite of major advances in their health situation, this population is still prone to a higher morbidity due to bacterial and viral infections of the airways as well as other infections. Down syndrome is associated with a variety of infectious diseases, and an increased risk of autoimmune disease as well as a high occurrence of malignancies, which are probably related to reduced immune surveil-lance mechanisms. According to Dr. Šustrová, about 5% suffer from a severe immunological defect of genetic origin.

For reasons not yet known, per-sons with Down syndrome also have an increased risk of autoimmune diseases (hypothyroidism, diabetes, atrophic gastritis etc.).

Dr Šustrová explained the intri-cate role of immune functions which are not fully understood in Down syndrome. A morphological and

functional reduction of the primary (thymus which plays an important role in the maturation and learning process of T-cells is characterised by numerous abnormalities and bone marrow) and secondary lymphoid organs, is well documented. Cell-mediated response to bacterial and viral intruders is abnormal. T-lym-phocytes, Natural Killers, antibody mediated immune reactions, phago-cytosis all seem to be dysfunctional or immature (e.g. circulating T and B cells); poor mitotic effector func-tions of T-lymphocytes and possibly a defective suppressor T-cell system further contribute to impaired immune functions.

Increased superoxide dismutase (the SOD-1 gene has been localised on chromosome 21) leads to low production of superoxide in neu-trophils and as a consequence to less effective killing of bacteria and other well-know organisms.

Decreased clearance of the lower airways and poor cough may also explain the predisposition to infec-tions of the lower respiratory tract.

While younger children suffer more from respiratory problems and distress, associated with recurrent morbidity, older children seem to be more prone to skin infections.

Her latest valuable research seems to indicate that babies with Down syndrome show less immunologi-cal problems than toddlers or older children, suggesting that there may be some form of acquired immune dysfunction causing recurrent infec-tions.

Dr Šustrová indicated measures to prevent, or at least correct, some def-icits. Breastfeeding for an extensive period of time – 18 months and more – might help to prevent allergies and recurrent respiratory health prob-lems or skin infections. A balanced diet and regular exercise are appro-priate preventive measures against immune disorders as well as immu-nization by administrating hepatitis B, diphtheria, tetanus, pertussis, oral poliovirus, measles, mumps and rubella, Haemophilus infl uenza type B, hepatitis B, infl uenza and pneu-monia vaccines, the latter especially

for children and adults with Down syndrome with congenital heart problems and recurrent pneumonia, and varicella vaccine for those who have not previously had chicken pox. She also stressed the importance of conventional treatments with antibiotics and immunomodulators, bacterial extracts, vitamins C or E, or zinc or selenium supplementation and even low-dosage antibiotics for a long period of time, before infections become chronic, as opposed to less well-documented or less benefi cial substitutions with nutritional sup-plements.

Dr Šustrová stressed the impor-tance of accurate information to ensure a state of physical health and mental well-being, which can only be achieved when intelligent and informed decisions on the proper treatments can be taken.

Dr. Storm, a well-known pae-diatrician who has written a com-prehensive book on medical issues in Down syndrome, related some of the experiences made in his Down syndrome out-patient service and answered the audience’s questions on specifi c problems.

This state-of-the-art conference on specifi c medical issues in Down syndrome as viewed by scientists of different European nations was closed by an organ concerto: “Between the Seasons” marking the end of year full of social events, festivities and personal contacts and opening the Christmas season.

Monique Randel-Timperman,

[email protected]

A full documentation in English or

German is available from the Arbe-

itskreis Down-Syndrom e. V., e-mail

address: [email protected]

A full list of EDSA members

is available on the EDSA

website:

http://www.edsa.down-

syndrome.org

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EDSA news



Venue: Auditori del Centre Cultural Caixa de Catalunya, LA PEDRERA Pg.

de Gràcia, 92. 08008- Barcelona

Registration Fee: Euro 190: Before April 15th

Euro 210: After April 15th

Euro 150: EDSA Members

Payment: Bank transfer to:

Banc Sabadell, Pg. De Gracias, 36, Barcelona

0081-0025-20-0001926301

Call for abstracts:

Abstracts for POSTERS must be sent to the Organizing Secretariat by

April 15, 2003. There will be a selection. Abstract of no more than 150

words. Poster size: 1m x 75 cm.

Cancellations: Cancellation will need to be notified in a letter and will

not be accepted after April 20th.

DARIO IANES - Psychologist. Co-director Edizioni Centro Studi Erickson,

Trento, Italy

Identity in individuals with disabilities

DOUGLAS FISHER - Ph.D., School of Teacher Education, San Diego State

University, San Diego, USA

1) What have we learned from integration?2) How can we get inclusion to work at school? Thoughts on making inclusion work at school

MARTA GOLANÓ - Psychologist and coordinator of the CDIAP program at

FCSD, Barcelona, Spain

Working with parents in the early years

ELSA CORIAT - Psychologist and psychoanalyst. Coordinator of the Lidia

Coriat Center, Buenos Aires, Argentina

The relationship between parents and professionals

ROSA BORBONÉS - Psychologist, speech therapist and coordinator of the

FCSD School Follow-Up Service, Barcelona, Spain

Psychotherapy groups for children and teenagers with Down syndrome: a place to get to know oneself and others

JOSEP MARTÍNEZ - Principal of Escola Els Xipers primary school,

Barcelona, Spain

Testimony from a committed school, Escola Els Xiprers

DOROTHY GRIFFITHS - Ph.D. Associate Professor Dept. Child and Youth

Studies, Brock University. Ontario, Canada

Social and affective relationships in individuals with disabilities

JAY KLEIN - Director of the National Home of Your Own Alliance Program,

University of New Hampshire, USA

Strategies for autonomous living and to foster relationships in individuals with disabilities

JOSEP RUF - Educator and coordinator of the FCSD Housing Program,

Barcelona, Spain

Own Home Program

MARIA J. MIQUEL - Teacher and coordinator of the Social Skills Program

(PAS) at FCSD, Barcelona, Spain and BEATRIZ GARVÍA - Clinical

psychologist and coordinator of programs at FCSD, Barcelona, Spain

Working with parents

MÀRIUS PERALTA - Educator and coordinator of the FCSD Job Integration

Program, Barcelona, Spain

Support in job placement

CARLO LEPRI - Psychologist. Director of Centro Studi USL3, Genoa, Italy

The person with disability, his/her co-workers and his/herfamily: suggestions in case of necessity

MARIA J. DELOR - Degree in Law. Coordinator of Training and Work

Integration in APRODISCA

Experiences in job integration

ALEXANDRE JOLLIEN - Philosopher. Fribourg, Switzerland

Contributions to society of persons with disabilities

FUNDACIÓ CATALANA SÍNDROME DE DOWN

VIII INTERNATIONAL SYMPOSIUM ON DOWN SYNDROMEBarcelona, 15 and 16 May 2003

Building the future.Questions for today.

Answers for tomorrow.Organized by:

FUNDACIÓ CATALANA SÍNDROME DE DOWNC/ València, 229. – 08007 Barcelona

Tel: 00 34 93 215 74 23 • Fax: 00 34 93 215 76 99 • E-mail: [email protected] • Website: www.fcsd.org

The VIII Symposium is intended to analyze, assess and fi nd answers to the problems and questions arising from integration as such. We wish to pursue strategies to face confl icts and thus facilitate and improve relationships and quality of life for individuals with disabilities, to enable full inclusion in all areas of life to be successful. The symposium is for psychologists, physicians, education scientists, teachers, social workers,

parents and other professionals interested in Down syndrome.

SPEAKERS

INFORMATION

154



EDSA news



1. IdentityEDSA is the European Confederation of entities that represent persons with Down syndrome and their families in countries and nations of Europe.

2. MissionThe mission of EDSA is to promote the development of the association network for Down syndrome in Europe, respecting the diversity of cultures and peoples, and with the common denominator of improving the quality of life for persons with Down syndrome and their families.

3. ValuesThe values that orientate EDSA’s activity and that of its member entities revolve around 3 central points: persons with Down syndrome, their families and the associative movement.

3.1. Persons with Down syndromeArticle 26 of the project CHARTER OF FUNDAMENTAL RIGHTS OF THE EUROPEAN UNION (28th September, 2000) establishes that The Union recognises and respects the right of persons with disabilities to benefi t from measures designed to ensure their independence, social and occupational integration and participation in the life of the community.In addition, EDSA promotes the defence and adoption of the following values:1. Dignity. To recognise the person’s value for the fact of

being a person, irrespective of sex, race, origin, genetic

features, language, religion or belief, political or any other opinion, membership of a national minority, property, birth, disability, age or sexual orientation.1

2. Inclusion. The disability is not in the person but in the interrelation between the person and his environment. Inclusion, which is understood as full social acceptance of the individual with Down syndrome in the community, is the only way for his/her effective social integration and recognition of his/her rights as a citizen.

3. Normalisation. Normalisation is recognition of the right to have as normal a life as possible, that is to say, no different from anyone else, notwithstanding the support given to meet their needs. The consequences will be inclusion in the community, approximation of services to the person and education for autonomy.

4. Autonomy. The objective of education and rehabilitation directed towards fully developing the potentialities of the person with Down syndrome is achieving a maximum degree of autonomy, for full enjoyment of rights and a life that is as normalised as possible.

5. Self-determination. The ultimate consequence of autonomy is self-determination, that is to say, the right to decide on one’s own life, and this is intrinsically related to experiencing quality of life. This right transcends the person’s disability and should be reinforced in all spheres of life, with supports to meet individual needs.

IDENTITY DOCUMENTof the

European Down Syndrome Association

E.D.S.A.Prof. Juan Perera

ASNIMO. Palma de Mallorca, Spain.

1 Article 21 of the European Union Charter of Fundamental Rights.

EDSA (European Down Syndrome Association) groups together Associations from 18 European countries that are working for people with Down syndrome, and it is a full member of the EDF (European Disabled Forum).The document that we are presenting is the result of wide debate and consensus by a multinational team of parents, profession-als and people with Down syndrome.It aims to serve as a reference document and a useful tool for producing or adapting, as necessary, the statutes or bylaws of Euro-pean Down Syndrome Associations.We have tried to specify and define our identity, mission, values, principles, objectives, priorities and good practice with great respect for the diversity of focuses and cultures, yet with the strength and professionalism that come from the input and experi-ence of people and organisations that have spent many years working for the quality of life of people with Down syndrome.

Prof. J. Perera

EDSA President

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EDSA news



6. Quality of life. The quality of life of persons with Down syndrome and their families is the point of reference in all actions and spheres.

7. Individualisation and specifi city. Persons with Down syndrome have the right to receive support that meets their needs, i.e., according to individual characteristics and medical, educational and social aspects related to the syndrome.

3.2. The families8. The family as a base of inclusion. The family is the primary

source of affective and learning stimuli for the person with Down syndrome, and so the way the family acts is determinant for a lifetime and especially in the fi rst stages of the child’s life. No kind of help is conceived for the person with Down syndrome without the full participation of families.

9. The needs of the family itself. There are special needs attached to having a family member with Down syndrome. Restructuring expectations on the son/daughter as soon as he/she is known to have Down syndrome, greater dedication and exhaustion, the need for information and advice, taking decisions at key moments, all of this requires the support of professionals and other families who have passed through the same experiences. The needs of families with a member who has Down syndrome are more and more becoming a direct reference for specifi c actions that address information, support, stress therapy, leisure, communication, training, exchange or any other kind of resources related to the presence of a family member with Down syndrome. The needs of the family must be borne in mind in all organisations.

3.3. The association movement10. Solidarity. This is understood to be the will to provide

solutions for the collective as a whole, with special attention to persons and groups at a greater disadvantage.

11. Justice. The Down syndrome association movement’s approach shall be based on rights and demanding the principle of equal opportunities, if necessary through positive discrimination measures.

12. Specifi city. Specifi city is a consequence of specialisation and involves giving a correct scientifi c answer to the limitations which in each person are derived from the presence of the extra chromosome 21. Without specifi city, there is no sense in having the association movement for Down syndrome (see Attached Document 1).

13. Social usefulness. All entities for persons with Down syndrome must be non-profi t making and their social objective must be measured in terms of quality of life for persons with Down syndrome and their families.

14. Transparency. Social vocation, honesty and transparency in management must be principles adopted by all organisations.

15. Public responsibility. Organisations for Down syndrome, whether publicly or privately managed, must carry out actions or render services that are linked to socially recognised needs, to basic rights of the individual and are accessible to all those citizens who require them.

16. Effi ciency. The organisations shall be developed according to principles of effi ciency, with management procedures and results directed towards quality.

17. Quality. The commitment with quality involves linking continuous improvement to all the activities of the organisations, which in turn are directed towards producing quality of life for their clients.

18. Client orientation. Persons with Down syndrome and their families should be present in the process of creating and developing activities, programmes and services. Including the client’s voice in the services is a premise for quality.

19. Cooperation. The Down syndrome association movement in Europe must be constructed and strengthened, using cooperation and interchange areas that promote actions aimed at giving everyone with Down syndrome in Europe and the world the same level of opportunities. In this respect, special attention will be given to nations or regions that are socially at a greater disadvantage or whose resources and possibilities are more limited.

4. PrinciplesOn the basis of these values, we proclaim the following general principles for all actions. 1. Persons with Down syndrome are persons who have the

same rights as other citizens and their capabilities must take precedence over their limitations or differences. The principle of equal rights between persons with or without a disability means that the needs of all individuals have the same importance, that these needs must constitute the basis of social planning and that all resources must be used in such a way to guarantee equal opportunities for everyone.

2. We proclaim normalisation and inclusion at all levels and in all services, especially with respect to the community’s ordinary resources (health, education, work, social services, housing, culture and leisure, etc.), which must provide the necessary support for persons with Down syndrome to have the same quality of service as the rest of the population.

3. We orientate our organisations towards quality of life for persons with Down syndrome and their families, understanding this to be: a) that their needs and expectations are covered, b) that they develop all their potentialities, and c) that they enjoy all their rights.

4. We defend respect of diversity, understanding this to be full social acceptance of persons with Down syndrome as active members of the same society.

5. We opt for specifi city, that is to say, individualised and specialised attention (prevention, education, health, rehabilitation, work...), which from the centres, services or ordinary resources of the community will ensure covering the specifi c needs of persons with Down syndrome.

6. We understand association leadership as a respectful form of collaboration and participation with all the organisations that respect the rights of persons with Down syndrome, without recourse to competition or confrontation at any time.

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EDSA news



5. Objectives and prioritiesConsistent with our principles, we advocate programmes and plans of action based on the following strategic courses of action:1. Prevention. Early diagnosis and genetic advice. The right

information and assessment will help parents to face the birth of their son/daughter with Down syndrome.

2. Defence of rights. EDSA will ensure the defence of equal rights of persons with Down syndrome in Europe and the rest of the world.

3. Health programmes. Good health is fundamental for intellectual development, as well as for a better quality of life and life expectancy. Specifi c medical problems must be diagnosed and tackled as soon as possible and national health programmes for persons with Down syndrome must be disseminated and adopted.

4. Early intervention programmes. Due to the brain’s plasticity during the fi rst years of life, it has been proved that early specifi c and well applied intervention programmes are effi cient because children who have taken part in them improve their cognitive and adaptation capacities.

5. School of diversity. Schooling in Europe must meet the educational needs of all its students, with or without a disability. No effort must be spared to supply schools with the necessary supports and resources, including those of teacher training. We defend an inclusive education that sets out to reconvert special centres into centres of resources and support for the inclusion of persons with Down syndrome in school.

6. Access to work. Professional training should be directed towards the effective preparation to fi ll a job, by providing the necessary support so that persons with Down syndrome can obtain employment and, therefore, an independent life economically. Within this framework, inclusion in work shall be understood as a continuum that includes different stages or levels of introduction: rehabilitation, training, occupational activity, protected work, work with support and ordinary work.

7. Support for families. Being the fi rst natural nucleus of inclusion of the person with Down syndrome from the beginning, the family must have human support, truthful information and proper training for full acceptance of the situation and their effective involvement in the attention and education of their son/daughter directed towards maximum autonomy.

8. Caring for serious disabilities. There are persons with Down syndrome with a serious mental or physical disability and needs for generalised support, whose possibilities of social inclusion and autonomous life are very limited and who represent a serious burden for their families. Their attention, once each case and its particular characteristics have been studied, can be given in highly specialised centres, ensuring the highest level of normalisation possible in each situation.

9. Orientation towards adult life. Longer life expectancy and the adoption of the principle of normalisation mean that

all services directed towards adults with Down syndrome are aimed at their being recognised as adult persons beyond their disability and maximum respect of their right to self-determination.

10. Inclusion in leisure and sport in the community, by giving the necessary support for effective social participation.

11. Guardianship services, by supporting the establishment of Guardianship Foundations so that care for persons with a disability is guaranteed when the family is unable to give it.

12. Training of specialists. Integral training of professionals (doctors, psychologists, educators, speech therapists, job trainers, physiotherapists, etc.) is fundamental so that persons with Down syndrome receive specialised attention according to their specifi c needs.

13. Support for research, development and implementation of new technologies. New applications of science for health care and integral care for the person with Down syndrome will be the subject of constant concern in order to achieve the permanent adjustment of services to new knowledge, resources and procedures.

14. Social image and association leadership, with the following basic objectives:

a) To promote a positive image of persons with Down syndrome in Europe, in order to achieve their social inclusion as citizens in their own right and to encourage attitudes and behaviours that strengthen their autonomy and improve their quality of life.

b) To disseminate the mission of EDSA in Europe and the world, its principal actions and its member entities.

c) To constitute a forum of information, training and research resources, from the permanent interchange between organisations caring for persons with Down syndrome and their families.

We are absolutely convinced that actions based on these priorities will have effects on the recognition of the values, rights and needs of persons with Down syndrome and their families, and that this recognition will rebound on the development of actions fi rmly directed towards improving their quality of life.

6. Good practicesWhen developing actions, programmes or services directed towards covering the unattended needs of persons with Down syndrome, the following criteria should be adhered to:1. Support adapted to the needs detected must be provided.2. They must be consistent with the values, principles and

priorities established in the EDSA identity document.3. They shall meet the needs of persons with Down syndrome in

a way that is integrated in the ordinary community services and only when this is not possible will they be attended to in “special” public or private services.

4. They must be focused as companies providing services to clients. The client concept implies the right to demand. Persons with Down syndrome are not users or benefi ciaries, but persons in their own right.

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EDSA news



5. The ultimate aim of the services is to produce quality of life and the terms under which it is hoped to improve the quality of life of persons will have to be defi ned and evaluated.

6. They must be managed with criteria of quality, progressively adapting to the parameters established in the EFQM Excellence Model.

7. They must be adapted to socially oriented economy criteria without their object being profi t-making and they must submit to the economic controls that the competent public bodies establish.

“THE SPECIFICITY IN DOWN SYNDROME”While recognising that the needs of individuals with Down syndrome have much in common with others with similar learning disabilities, EDSA wishes to stress the need to also recognise the specifi c needs of those with Down syndrome.

The specifi city in Down syndrome is defi ned by an extra chro-mosome in the par 21 (or essential part of it), which appears in the genetic map (karyotype) of persons with Down syndrome and which is responsible for alterations of a morphological, bio-chemical and functional type produced in various organs and, especially in the brain, during the different stages of life.

To know the specifi city means knowing the identity of a syn-drome, in our case Down syndrome. It means studying which are the typical characteristics that defi ne it, which do not occur (or which occur in a different form or in an unequal proportion) in other types of mental retardation. It means differentiating in an objective scientifi c way what is in common with other types of mental retardation and what is exclusive to Down syndrome.

There are an increasing number of rigorous and precise sci-entifi c studies published by specialists in each of the disciplines connected with Down syndrome and which specify aspects typi-cal of Down syndrome. In its entirety, J. Rondal has described what he calls “the syndromic specifi city” (Rondal, J.A., Perera, J. & Nadel L. (1999). Perspectives on Down Syndrome. Pp 235-240. In J.A. Rondal, J. Perera & L. Nadel (1999). (Eds.) Down Syndrome: A review of current knowledge. London, UK: Whurr).

Specifi city does not mean denying the many things that there are in common with other syndromes or with mental retarda-tion in general. It is obvious that there are many common ele-ments that we must know how to use and not have any diffi culty in recognising.

Specifi city does not mean segregating persons with Down syndrome with respect to the rest of the population, with or without mental retardation. Neither does it mean creating ghettos for persons with Down syndrome, nor establishing exclusive centres or services for persons with Down syndrome, especially in adult life. Where these exist, they are the excep-tion that confi rms the rule and, normally, they are organised as centres of research, resources and support for the inclusion of persons with Down syndrome.

No one says that a young person with Down syndrome cannot work or be trained or live in a supervised home with other young people, whether they have a mental retardation or not. Indeed, to maintain specifi c services confi ned to people with Down syndrome goes against all criteria of inclusion.

What we do affi rm is that the rendering of services – at all levels: school, work, in society – must be done in an absolutely integrated and specialised way and with specifi c programmes that recognise the peculiarities and the specifi city of the Down syndrome in each person and that this attention should also be given in the ordinary services of our community.

It must not be forgotten that there are – as we all know – a great variability (determined by its singular genetic load) and enormous differences among individuals with Down syndrome. This does not hinder detecting, researching and describing a series of traits or features that are relatively homogeneous and associated specifi cally with Down syndrome, and above all, elaborating highly specialised measures of intervention so that more effi cient and direct methods of intervention and education can be designed to alleviate or compensate their limitations.

Mental retardation does not identify Down syndrome. Present-day research on the human genome and the action of genes that is found to be altered in persons with Down syn-drome will probably permit the future development of specifi c treatments for some of the alterations of those who suffer the syndrome. Among them, mental retardation is the fi rst chal-lenge to be tackled.

Chapter IIIEquality of the European Union Charter of Fundamental Rights

Article 21Non-discrimination

1. Any discrimination based on any ground such as sex, race, colour, ethnic or social origin, genetic features, language, religion or belief, political or any other opinion, membership of a national minority, property, birth, disability, age or sexual orientation shall be prohibited.

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DSI news

Down Syndrome International news

• Down Syndrome International is a federation of organisations and individuals committed to ensuring the quality of life and human rights for all people with Down syndrome.

• DSI organises the World Congress on Down Syndrome every 3 years with a host country – the 8th will be in Singapore October 2003.

• DSI is focusing on dissemination of information in collaboration with other organisations.

• DSI is developing a website at http://www.down-syndrome-int.org/

• Membership is open to individuals with Down syndrome, parents, practitioners, researchers and organisations.


8th

World Down Syndrome Congress

Suntec Singapore International Convention & Exhibition Centre, Singapore

1 – 5 October 2003

Down Syndrome: Global Progress in a Changing Era

Conference update: Registration details are now available. Contact

DSI for a copy at [email protected] or tel: +44 (0)23 9285

5330. Please note that the Early Bird rate for registration is before 1st April

2003.

A message from the President of DSIThis will be the 6th World Congress that I have attended and each one has been a wonderful experi-

ence. Most Down Syndrome Associations from around the world send representatives, many families attend, leading researchers and practitioners share the latest knowledge and good practice, adults with Down syndrome advocate for themselves and confront parents and service providers to rethink some of their attitudes and expectations and we all have a great social time as well! We see a new part of the world and we return home buzzing with new ideas, new friends, plans for collaboration with others, and with renewed enthusiasm for the task we are all engaged in – improving the quality of life for indi-viduals with Down syndrome and their families.

Do join us in Singapore. These World Congresses have been maintained by the enthusiasm of a small international group – now formally established as Down Syndrome International. The main goal of DSI is to promote international collaboration, to promote the human rights of individuals with Down syn-drome and to facilitate the sharing of information through the congresses, publications and the world-wide-web. Over the next year we will be having a membership drive and we will elect a new Board in Singapore. Do consider joining – membership will have some advantages at the Congress, we are negotiating member discounts on some international journals. We also need a signifi cant membership if we are to speak out on human rights issues, such as discrimination in many countries’ immigration policies, an issue we are addressing at present. Visit the website for membership details.

159



Conferences

Conferences Conferences Conferences

Down Syndrome News and Update 2(4)

2 - 4 May 200313th Annual Roundtable of the IASSID Aging Special Interest Group (Theme: Aging, Intellectual Disabilities and

Quality of Care: A Picture of the Real World in 2003), Volos, Greece

http://www.iassid.org/spec-int-gr/aging/13-aging-rdtble.htm

1 - 5 October 20038th World Congress on Down Syndrome, Singapore. (Theme: Down syndrome: Global progress in a changing era)

Organised by Down Syndrome International

http://www.down-syndrome-int.org/congress/current/

31 October - 2 November 2003 International Mosaic Down Syndrome Association (IMDSA) Convention

http://www.imdsa.com/

14 - 19 June 2004 12th International Association of the Scientific Study of Intellectual Disabilities (IASSID) World Congress,

Montpellier, France

http://www.iassid.org/communication/12th.htm

National Down Syndrome Society (U.S.) & Down Syndrome Research Foundation (Canada)

Research Conference on Cognition and Behavior in Down Syndrome

When: April 3-5, 2003

Where: Denver, Colorado, United States • Hyatt Regency Denver

Why: To review the latest in research on cognition and behavior in Down syndrome and to determine priorities in the specific

areas of imaging, memory, mental health, mouse models, speech and language and positive behavioral support.

The Down Syndrome Medical Interest Group (DSMIG) will meet on Thursday, April 3, prior to the conference.

CMEs and CEUs will be available for the conference and DSMIG meeting.

Friday 4 April - KEYNOTE AND PLENARY SPEAKERS

Helen Tager-Flusberg: State of the Art - Cognition Research

Carolyn Mervis: State of the Art - Behavior Research

Mark Latash: Motor Skill Development

Elizabeth Head and Ira T. Lott: Dementia and Memory

Saturday 5 April - WORKING GROUPS

Imaging • Memory • Mental Health • Mouse Models • Speech and Language • Positive Behavioral Support

For more information, please contact

National Down Syndrome Society

666 Broadway

New York, NY 10012

United States

Tel. (800) 221-4602 or (212) 460-9330

Fax: (212) 979-2873

E-mail: [email protected] / www.ndss.org

Down Syndrome Research Foundation

1409 Sperling Avenue

Burnaby, BC V5B 4J8

Canada

Tel. (604) 444-3773

Fax: (604) 431-9248

E-mail: [email protected] / www.dsrf.org

160



The Down Syndrome Educational Trust news

http://www.downsed.org/ http://www.down-syndrome.info/



Trust newsEveryone at the Trust has con-

tinued to be very busy over the past couple of months. We did fi nd time to enjoy some festivities with many local families and as a staff group, as you can see on the ‘Christmas Par-ties’ page on p.163.

ServicesThe Early Development groups are

in full swing again, and at present we do not have any vacancies in the Port-smouth groups but we still welcome visitors to them by appointment and we are happy to give advice to fami-lies while waiting for a vacancy. If we are able to recruit some new staff in the next few months we hope to be able to expand this service in Port-smouth and around the country. We are well aware of the importance of providing the best possible advice and support to families in the fi rst fi ve years of the children’s lives. The AdviceLine, the assessment service and the school consultancy service are also busy and we are fully booked for assessments or school visits before July, though we will always try to deal with any really urgent situation. The Family weekends are a good way of getting information and advice from us and the next one is in May so it is time to book if you plan to attend (see p.164).

Training Our training schedule is also quite

full until the end of this year, and to give some idea of the demand, in Feb-ruary and March we are providing 9 days of training around the UK and abroad and 7 days of training work-shops at The Sarah Duffen Centre. If anyone is thinking of organising a training event later this year, then they should contact Sue Buckley as soon as possible. In the next issue, we will list the venues where our staff are speaking – meanwhile they can be found on our website.

Leaflet for new parentsHealth visitors, midwives and

parents have all contacted us in the last few months and been pressing us to improve our publicity as they tell us that many families still do not know that we are here to help in the fi rst years of their child’s life. This has led us to design a leafl et for parents which could be given to health visitors, maternity units, general practitioners, and child development centres. We are includ-ing some copies in this mail out and hope that our readers will pass them on to families and professionals in their area. If you would like more copies please phone Jackie Dixon or Caroline Bourne in the Trust offi ce and they will send them to you free of charge. We would also like feed-back on the content and any ideas for improvements – it is very diffi cult to get all the messages right for new parents in the early days.

PublishingAll the routine activities behind

our printing, production and mail order services have continued as usual, and we are still working on the fi nal few books in the Down Syndrome Issues and Information Development series – we appreciate the patience of everyone who has purchased packs and is still waiting for the last topics. Maybe we should have published them as a monthly serial!

Expanding our teamWe are currently in the process

of recruiting additional staff to join our service delivery team. Driven by increasing demand for our services, as well as growing calls from par-ents for more effective Speech and Language therapy services, we plan to recruit extra Psychologists and a Speech and Language Therapist.

The new staff members will help us to provide a comprehensive range of services including: consultancy services for families, detailed devel-

opmental assessments for individual children, expert advice for families, teachers and other professionals through our free AdviceLine service, and our growing outreach services for parents and schools across the UK, including new regionally-based Early Development Groups (includ-ing our new branches in Bristol and Berkshire – see below).

New servers installedMany readers will be aware of

the major problems we were having with our old web, e-mail and docu-ment servers during the latter part of 2002. Most of this equipment was over 5 years old and we were expe-riencing increasingly regular server failures.

We have now been able to purchase and install new servers thanks to a generous donation of nearly £9,500 from the Vodafone UK Foundation in addition to gifts from two private individuals.

The newly-installed servers will provide much more reliable access to our websites and will enable us to implement our plans for an enhanced range of on-line services, including our on-line shop.

However, the problems with our old servers during 2002 and the time taken to install the new equipment have delayed the planned launch of our on-line shop (www.downsed.com). This on-line shop should be up and running early in 2003. It will provide detailed information about the wide range of resources and services available from the Trust, along with on-line ordering, booking and secure multi-currency credit card payment facilities. However, we still require funding to support the costs of developing these new web services – if you can help, please contact us.

New research underwayAs you will have read elsewhere

in this copy of DSNU, we have now started our local research project investigating the benefi ts of using

161







the Numicon system to help children with Down syndrome to understand number and to develop further activ-ities to extend their use of number knowledge to everyday applications. This research project was funded by a grant of almost £17,000 from the Esmée Fairbairn Foundation.

Over the coming months, we plan to submit bids for research about new models for speech and language therapy, as well as a detailed evalu-ation of current models of inclusive education for children and teenagers with Down syndrome.

Branch newsNew Berkshire Branch

A group of parents have formed a committee to establish a Berkshire Branch of The Down Syndrome Educational Trust. They are plan-ning to offer a speech and language therapy group, in collaboration with the National Health Service thera-pists if possible, and some training in November. They have already done some successful fundraising to fund their activities and we are pleased to support the group as much as we can from Portsmouth. If you wish to fi nd out more about the Berkshire branch please contact Debbie Benson by phone: 01488 682421 or email: benson@avantima

rketing.fsnet.co.uk

Bristol Branch updateThe Bristol Branch continues

to provide speech and language therapy for preschool and school age children. Sue Buckley visited the groups in action in the autumn and enjoyed observing the groups provided by Sarah Coles, Speech and Language Therapist with the local National Health Service Trust. While Sarah was on holiday in Janu-ary, the Branch organised talks from experts on Numicon, ‘glue ear’ and its management, and links between memory and language. Contacts for the Bristol Branch are Annabel

Dixie (tel: 0117 9624735) and Marie-Louise Cook (0117 9686893).

We have also received many enquiries from other groups of par-ents and professionals who would like to set up a branch in their area. If you’re interested in establishing a local branch, please contact the Trust. Readers are reminded that we set out our proposals for Branches in the last issue (p. 107).

Charles at the V&A

This charming photograph of Charles Boreham, taken at a meet-ing of the Bristol Branch of The Down Syndrome Educational Trust, was one of the winners of Mencap’s ‘Snap!’ 2002/3 photo competition.

The prize winning photographs are currently on show at one of the world’s top art and design museums – the Victoria and Albert (V&A) Museum in London. The ‘Snap!’ exhibition runs from 14 February to 13 March 2003.

To view all of the photos in the ‘Snap!’ exhibition see Mencap’s website at http:

//www.mencap.org.uk/html/news/

snap_online.htm

For details about visiting the V&A Museum, see their website: http:

//www.vam.ac.uk/visiting/

Photo by Barbara Evripidou.

Funding successes

Support from Children’s

MiracleWe have recently received a

substantial £7,500 donation from the Canadian investment bank CIBC World Markets, as a result of their Children’s Miracle fundrais-ing campaign in 2002. Our initial

contact with CIBC World Markets was through one of their employees in their London offi ce, whose son with Down syndrome has benefi ted from the services we provide. We very much hope to be working with everyone at CIBC World Markets’ London offi ce again over the coming year.

DSii Adult and Health seriesWe continue to receive excellent

feedback from parents and profes-sionals about the Down Syndrome Issues and Information materials we have published covering the Educa-tion and Development of individuals from birth to 16 years. The following recent comments are typical of the feedback we have received:

“Your materials are wonderful. I believe the DSii books are the best of their kind. They clearly explain past research and expert experience to provide parents a realistic picture of the challenges our children face while at the same time encouraging and giving us, our children, and our communities, the tools to achieve a better life. Thank you very much.”

“Thank you for sending the last lot of modules to me – they have been a wonderful read with incredible amounts of information.”

Positive comments such as these help confi rm the value of what has been, and continues to be, a mas-sive undertaking for The Trust, and illustrate the vital impact our new resources are making to the lives of individuals with Down syndrome and their families all around the world.

Now we are close to completing the fi nal books in the Education and Development series, we are currently seeking additional funds so we can produce two entire new series in the ambitious Down Syndrome Issues and Information publishing project. The new Adults with Down Syn-drome series will provide detailed information and advice about the wide range of issues affecting adults with Down syndrome, and the Healthcare and Medical series will

162







provide expert and detailed medical advice for professionals and parents.

Recent fundraising efforts have secured £5,000 from the Rufford Foundation for the Adults with Down Syndrome series and £2,000 from the Roger Vere Foundation for the Healthcare and Medical series. However, we still require a further £53,000 to publish these important new publications, and we are cur-rently identifying and approaching other possible funders. If any read-ers can suggest possible sources of funding, especially from non-UK companies or foundations, we would love to hear from you. Please contact Howard Hurd at the Trust if you can help.

More grants for our Early

Development GroupsSince the last edition of DSNU,

we have received two more grants to support our Early Development Groups: £2,500 from the London Law Trust and £250 from a small

local charitable trust. We have now secured grants totalling more than £25,000 towards the pre-school groups we run for children with Down syndrome from Hampshire and surrounding coun-ties. These groups help to provide the

best possible educational start for local pre-school children with Down syndrome, and enable us to develop practical techniques that we can

share with other similar groups to benefi t children all across the UK.

Can you help?Become a member

Last year we launched a Trust membership scheme, and we are delighted that so many of our sup-porters and service users have joined up. By becoming a member of The Trust you help support our ongoing costs, and help us continue provid-ing detailed expert information to parents and professionals through our free AdviceLine service and pop-ular websites. Membership costs just £45 per year for individuals/families, and includes 4 issues of Down Syn-drome News and Update. Existing DSNU subscribers can upgrade to Trust membership for just an addi-tional £5.

For more details about Trust membership visit http:

//www.downsed.org/membership/

or contact the Trust by e-mail ([email protected]) or by tel-ephone +44 (0)23 92 855 330.

Become a TrusteeWe are looking for two new

Trustees at present. The Trustees meetings are held in Portsmouth, therefore you would need to live within 30 miles to consider this role. If you are interested in offering your services, contact Sue Buckley for more information on the role and responsibilities of Trustees.

Personal contactsMany of the grants we receive

– such as the £9,500 from the Voda-fone UK Foundation that enabled us to purchase new servers – arise from parents’ or relations’ personal links with companies and trusts.

Does your employer run a com-munity support or charitable dona-tions fund? We are always much more successful raising money from a company if one of its employees has given us their personal recom-

mendation. Many companies will not consider unsolicited applications.

Do you know anyone involved as a trustee or administrator of a grant-making trust or foundation? Again, many trusts do not consider unso-licited applications as they prefer to ask charities to bid for funding. Last year we were able to secure a very substantial grant because the trust administrator was the grandparent of a child with Down syndrome who had benefi ted from our services.

Do you, or anyone you know, sit on the fundraising committee at your local golf club, Round Table, Rotary Club, Masonic Lodge, or Buffaloes? Again, we frequently receive support from groups all over the countries as a result of personal recommenda-tions.

If you can think of any useful con-tact you may have, or have personal links with companies or trusts, then please get in touch with Howard Hurd at The Trust.

Fundraising eventsOver the few months since the

last issue of DSNU, we have received several thousand pounds from donations and fundraising events. The events are all organised by vol-unteers – usually parents – across the country, and they provide an extremely valuable source of core income with no outlay for the Trust. We would like to thank all our sup-porters who continue to fundraise for us, and devote their time and effort in organising events.

While the work of the Trust con-tinues to expand and we receive much feedback thanking us for our work, the task of funding our activi-ties is a constant demand. We do not have any reserves – we use all our funds for active work. We rely on donations and grants for nearly half our income. So – if you have any ideas for fundraising events or activities that you’d like to discuss, please contact Howard Hurd at the Trust. We can help with tickets, leafl ets, advertising, posters and other advice.

Request for photosWe are always looking for good ‘action’ photos to

include in our publications. If you have a photo you think we could use, and would like to see your family featured in our publications, or on our websites, please contact Linda Hall at the Trust: [email protected]

Please send prints by post, or high resolution digital images by e-mail. Prints will be scanned and returned immediately.

163







Christmas Parties at The Sarah Duffen Centre

The Down Syndrome Educational Trust held a Christmas Party on Sunday 16th

December 2002 for local children with Down syndrome and their families.

More than 30 families came to the party, and well over 100 guests enjoyed the

fun. Many of these families are regular visitors to the Sarah Duffen Centre, as

their children attend our fortnightly Early Development Groups.

The party started with a delicious spread of party food, provided by parents.

The children – and their mums and dads – were then treated to a performance

by top local children’s entertainer The Wibbly Wobbly show.

Then there was a special visit from Father Christmas, who gave presents to

each of the children. After Santa flew on to his next destination, the kids enjoyed a

variety of party games, including ‘Pin the nose on Rudolph’ and pass the parcel.

By the end of the afternoon everyone went home tired but happy, and full of

festive cheer. The Trust hopes that next year’s Christmas party is just as much

fun.

The Trust also

held a lunchtime

party for all staff

on December

20th (see

pictures to the

left).

164







Special Needs and Families Research ProjectUniversity of Wales, Bangor

Sponsored by the PPP Foundation

Request for participation on a research project in how family members, especially parents/parental caregivers, adapt to the care of

children with special needs (specifically, Down syndrome). We are interested in

• What kind of positive experiences are there associated with the care of children with special needs, and how might these

experiences help parents to adapt successfully?

• How do changes over time affect the adaptation of parental caregivers, and do various positive experiences help parents to maintain

a sense of satisfaction in their caring role?

We are looking for 150 families of children with special needs in the NORTH WALES and ADJACENT areas to participate in our

research project. Ideally, families will be willing to participate in our research now and also agree to be involved in a follow up data

gathering phase in approximately 12 months time. The main benefits of this research relate to improving the knowledge that we have

about families and how they adapt to caring for children with special needs. In particular almost nothing is known about parents’ positive

experiences and how these might help families to cope more effectively. Also we appreciate that participation in research takes up

valuable time. Therefore, we hope that families involved in the research will feel able to accept payment for participation.

If you are interested in taking part please contact Alexandra Beck at the University of Wales Bangor, Bangor, School of Psychology,

Brigantia Building, LL592AS. E-mail: [email protected] Telephone 01248 388436 for more information.

Outline programme:

• Early language development

• Teaching children number - The Numicon approach

• Teaching reading to teach talking

• Priorities for early intervention from birth to 3 years

• Medical issues

• Education

• From first words to sentences

• Computers as an aid to learning

• The statementing process

• How do we change children’s behaviour?

• Working memory skills

Parent and family weekends

3 - 4 May 200323 - 24 August 2003

at The Sarah Duffen Centre, Portsmouth, UK

Weekend conferences offer

the opportunity to attend a

range of sessions covering a

variety of topics. Speakers

from different professions

provide the opportunity to

share information and discuss

parents concerns, with each

session lasting one-hour. The

weekend also offers chances

for families to meet with

each other and is relaxed

and informal. A crèche for a

limited number of children

is available. Please request

our Services brochure for

further details. Tel: +44

(0)23 9285 5330, or E-mail:

[email protected]

Order Reference Description Excl.VAT Incl.VAT

CNF/20030503 Family conference - delegate May 2003 59.15 69.50

CHE/20030503 Family conference - crèche place May 2003 29.36 34.50

CHF/20030823 Family conference - delegate August 2003 59.15 69.50

CHE/20030823 Family conference - crèche place August 2003 29.36 34.50

(fee includes buffet lunches, tea and coffee on both days)

Aims and scopeDown Syndrome News and Update aims to provide information to meet the needs of a variety of professionals and parents caring for individuals with Down syndrome around the world. It covers a range of subjects including early cognitive development, speech and language, general health, medical issues, education, behaviour, numeracy, social skills, and issues in adolescence and adulthood. Information is presented through detailed articles, reviews, research summaries, case studies, news, and by correspondence.Down Syndrome News and Update should be of interest to parents of individuals with Down syndrome as well as speech and language therapists, doctors, psychologists, teachers, and other education and healthcare professionals.Down Syndrome News and Update aims to provide a platform for the exchange of experiences and observations, as well as the dissemination of practical information. It therefore welcomes a diverse range of submissions for publication from short correspondence to detailed ‘subject overviews’. It welcomes contributions from professional practitioners and researchers, and from parents and individuals with Down syndrome wishing to share experiences and views.

Guidelines for contributors

Longer articles and reviewsArticles may take the format of a detailed analysis of a particular subject or issue, or a summary review. Detailed ‘subject overviews’ should draw on current scientifi c knowledge and clearly explain how this guides our understanding of effective interventions. Articles should contain suffi cient background and information to be understandable to readers with little or no previous knowledge of the subject matter.Summaries of research are encouraged but should be accessible to a wide range of readers. Researchers are particularly encouraged to draw out implications for effective practice from research studies. Detailed academic papers presenting research fi ndings should be submitted to Down Syndrome News and Update’s sister publication, the journal Down Syndrome Research and Practice.

Shorter case studies, resource reviews,

and personal experiencesAccounts of personal experiences of parents, professionals and individuals with Down syndrome are welcomed. Ideally they should focus on a particular issue or concern. Both accounts of particular success and solutions, and accounts of diffi culties or problems, are encouraged. Shorter or more general accounts of personal experiences may be submitted as correspondence.Reviews of books, teaching materials, educational computer software, as well as Internet and other electronic media resources, are all welcome. Full details of the subject of the review should be provided; e.g. publisher, source, ISBN, price, etc.

NewsNews items are welcomed from around the world, and in particular from organisations supporting individuals with Down syndrome in their particular region or country. A diary is available for notifi cations of a variety of events. This will eventually be linked with an events database on The Down Syndrome Educational Trust’s web site.

CorrespondenceCorrespondence from readers is particularly encouraged, whether as feedback on previously published material or as an expression of views and experiences.

Editorial reviewAll submissions will be editorially reviewed with particular regard for comprehensibility to a wide range of professions and parents. If the reviewers recommend publication of an article, but suggest amendments to it, the person submitting the paper will be invited to consider those changes before a fi nal decision to publish is made. The Editor reserves the right to edit notes, reports and other submissions when printing and publishing timetables make consultation with authors diffi cult.

SubmissionsPapers submitted to the Journal should be sent to:

The Editor, Down Syndrome News and Update,

The Down Syndrome Educational Trust, The Sarah

Duffen Centre, Belmont Street, Southsea, Hampshire,

PO5 1NA, United Kingdom or e-mailed to dsnu-

[email protected]

a

Manuscript RequirementsPlease send four copies of your manuscript, which should be typewritten and double-spaced on A4 paper, with any tables or illustrations. At the same time, please submit your article on a 3½-inch fl oppy disk or ‘Zip’ disk in PC or Mac format. Most word processors’ fi le formats can be supported, though Microsoft Word fi les are preferred. If in doubt, Rich Text Format (RTF) or plain text (ASCII or Unicode) fi les are the most compatible. Tables and graphs may be submitted in most major spreadsheet packages’ fi le formats (Microsoft Excel preferred). Diagrams should be submitted as ‘vector graphics’ fi le formats (e.g. EPS, WMF, etc.)

Manuscript layoutTitle and authors: The suggested title should appear on the fi rst page of the manuscript. The name(s), title(s) and affi liations of the author(s) should appear on the second page. Where there is more than one author, indicate who should receive correspondence.Formatting and layout: Sub-headings are encouraged, and should be typed in bold. If sub-headings are of different sizes, please indicate clearly. Please do not indent paragraphs, but use two double-spaces between paragraphs. One space should be left after a full stop. Please use as little formatting as possible. Quotations of about 20 words or more should be placed on a new line.Citing references: Bibliographical references within the text should be made by citing reference numbers (the reference list should be in citation order).Terminology and spelling: As this is an international and an inter-disciplinary journal the needs of readers from different backgrounds should be born in mind. Technical or other terms specifi c to a particular discipline should be avoided if possible; otherwise discrete explanations or a glossary might be added. Abbreviations, such as of journal titles, should be avoided. Authors should avoid the use of potentially devaluing terminology for people with a learning disability. The terms ‘children with a developmental disability’ or ‘with moderate/severe learning diffi culties’ are acceptable. The terms ‘mental handicap’ and ‘mental retardation’ are not. The term ‘Down syndrome’ should be written in full, and ‘syndrome’ spelt with a small ‘s’ except when in a title. Please refer to ‘children with Down syndrome’ rather than ‘Down syndrome children’. All papers should be in English and spellings should be ‘UK’ English.Glossary: Where technical terminology is used, please provide a glossary before the references.

References formatA key list of up to 8 bibliographical references, cited in the text, should appear at the end of the paper. The list should be numbered and ordered in citation order. Entries should adopt the conventions described in the APA style guidelines as contained in The Publication Manual of the American Psychological Association 4th ed., 1994 (Subject Reference: 808.02 AME). Some examples follow:ArticlesHitch, G.J., Halliday, S., Schaafstal, A.M. & Schragen, J.M.C.

(1988). Visual working memory in young children. Memory and Cognition, 16, 120-132.

ChaptersLight, P. (1985). The development of view-specifi c representa-

tion considered from a socio-cognitive standpoint. In N.H. Freeman (Ed.), Visual Order: The Nature and Development of Pictorial Representation (pp. 214-230). Cambridge: Cambridge University Press.

Article (World Wide Web reference):Rondal, J. & Comblain, A. (1996) Language in Adults with

Down syndrome. Down Syndrome Research and Prac-tice [Online], 4(1), 3-14. Available: DownsNet, The Down Syndrome Educational Trust. http://www.downsnet.org/research/articles/lang_adult/default.asp [Accessed: 1998, March 20].

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Documents

contents · Topics featured in this issue are under-standing number, an overview of research ... • Teenagers and friends The need to ﬁ nd ways to increase friend- ... twenty-three’