down syndrome news and update · 3 editorial welcome welcome to the first issue of down syndrome...

Down SyndromeNews and Update

Volume 1 No.1 - June 1998

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Contents

Editorial3

EducationIncluding children with Down syndrome

5Review: Children with Down syndrome

14Review: An evaluation of educational placements in Devon

15Research: The social development of children in special school

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HealthThe thyroid and Down syndrome

20Nutritional supplementation - controversy and further comments

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Speech and languageBilingualism and Down syndrome

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Information technologyGetting started on the Internet

31Educational software reviews

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Research updatesThe National Down Syndrome Society’s 11th Research Conference

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NewsThe Foyle Down Syndrome Trust

41News from The Sarah Duffen Centre

42Diary dates

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SupplementThe Down Syndrome Educational Trust Review of Activities during 1997

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Down Syndrome News and Update [1.1]

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GILLIAN BIRDDirector of Consultancy and Training Services,The Down Syndrome Educational Trust, UK.

Professor BEN SACKSConsultant Developmental Psychiatrist and Medical

Advisor, The Down Syndrome Educational Trust, UK.

FRANK BUCKLEYDirector of Operations and Finance,

The Down Syndrome Educational Trust, UK

BOB BLACKDevelopment Officer (South West Region),

The Down’s Syndrome Association

Editorial Board

EditorSUE BUCKLEY

Professor: Psychology of Developmental DisabilityDirector: Centre for Disability Studies,

University of Portsmouth, UK.Director: The Down Syndrome Educational Trust, UK.

Assistant EditorDR ANGELA BYRNE

PsychologistThe Down Syndrome Educational Trust, UK.

Down SyndromeNews and Update

Aims and scopeDown Syndrome News and Update aims to provide information to meet the needs of a variety ofprofessionals and parents caring for individuals with Down syndrome around the world. It covers arange of subjects including early cognitive development, speech and language, general health, medicalissues, 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 Downsyndrome as well as speech and language therapists, doctors, psychologists, teachers, and othereducation and healthcare professionals.

Down Syndrome News and Update aims to provide a platform for the exchange of experiences andobservations, as well as the dissemination of practical information. It therefore welcomes a diverserange of submissions for publication from short correspondence to detailed ‘subject overviews’. Itwelcomes contributions from professional practitioners and researchers, and from parents andindividuals with Down syndrome wishing to share experiences and views.For further guidelines for submissions, please see pages 53-55.

We are seeking additional members for the Editorial Board. If you are interested in assisting byreviewing submissions and/or contributing reviews or articles, please contact the Editor at the address

shown below for further information.We would particularly welcome advisors from a variety of countries.

Address for correspondenceEditor.Down Syndrome News and Update.The Down Syndrome Educational Trust.The Sarah Duffen Centre, Belmont Street, Southsea, Hampshire PO5 1NA England.Tel +44 (0) 1705 824261 Fax +44 (0) 1705 824265 Email [email protected]

Down Syndrome News and Update [1.1]

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EDITORIAL

WelcomeWelcome to the first issue of Down Syndrome News and Update, which will be published fourtimes a year. The aim of this publication is to keep readers up to date with the latest informationon the health, development and education of children and adults with Down syndrome. Ourtarget audience is practitioners, particularly teachers, speech and language therapists,psychologists, health visitors, general practitioners, social workers and family members,particularly parents. What we think these readers will share in common is a need to access qualityinformation about Down syndrome when they first have a child with Down syndrome in theirschool, practice or family and then a need to keep that information up to date.

The Down Syndrome Educational Trust is involved in providing a wide range of training and overthe last seven or eight years the demand for training has shifted from requests from specialeducation and specialist services to requests from mainstream education and mainstream services.We are delighted by this shift, of course, since the philosophy underpinning all our work is theright of all children and adults with Down syndrome to be full citizens and included in all aspectsof mainstream life in the community. This means access to all the resources everyone else in theirage group has access to, particularly in education and to the social life of their communities.

We have begun to form an Editorial Board with staff from The Down Syndrome Educational Truston the basis of their expertise to launch the publication. We will be inviting other colleaguesaround the world to join us. We intend to have regular articles and information on development,education, speech and language, health, and research. Each issue will include a range of articles,reviews of research, reviews of resources, news and correspondence.

In this issueIn this issue, the focus is on successful inclusion in education for children with Down syndrome,with the leading article addressing the issues of attitudes, whole school culture and successfulplanning on a school level. The second part of this article, addressing the implications of thespecific learning needs of the children for adapting the curriculum, will be in the next issue. Botharticles are based on our experience of placing and supporting children in mainstream schools overthe past ten years and they cover material that we regularly share at our education workshops. Inour view, we are still not planning for inclusion at the appropriate levels in the UK, i.e. at thepolicy, authority or whole school levels. Too often a school only thinks of inclusion when a child isabout to arrive and all the arrangements focus on individual support for that child to help them tofit into a culture and an educational environment not designed for them. Since all the evidence isthat the schools that are best at inclusion are the best for all the other pupils in them, we hopethat our article will encourage some debate in staff rooms and some whole school planning forchange.

As more and more children with Down syndrome are being included, it is essential that weobjectively evaluate the effectiveness of inclusion. We provide readers with summaries of thefindings of two studies, one by Denise Dew Hughes of Oxford, looking specifically at socialeffectiveness and the other by Jane Beadman of Devon, comparing the progress of children inmainstream and special schools. Educators will also be interested in Gillian Bird’s review of a newbook on including children with Down syndrome by Stephanie Lorenz containing much practicaladvice for teachers and support assistants in mainstream schools and the guides to useful softwarein the classroom.

Access to information on every conceivable topic is undergoing a revolution with the advent of theWorld Wide Web. Frank Buckley and Angela Byrne have written a introduction to gettingconnected to the Internet, and will present a guide to the information resources available on theInternet in the next issue. The Down Syndrome Educational Trust is continuing to develop a website (at http://www.downsnet.org/). We hope that it will become a comprehensive informationresource on Down syndrome and be recognised for the standard of its contents. We will only beincluding material of a standard generally accepted by peer review in the scientific community.We are also developing host sites for several other organisations including the European DownSyndrome Association and the Down’s Heart Group.

Editorial

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While we welcome the potential of the Internet for providing the possibility of rapid exchange ofinformation and expert advice, we also worry about the amount of misleading and inaccurateinformation that is also available on the Internet. One of the topics in our health section,‘Targeted Nutritional Intervention’ (‘TNI’), is an example of this. Many sites and newsgroupscontain misleading information, some just wrong and some making wild claims for effects forwhich they cannot produce any acceptable evidence.

In a recent issue of our Newsletter (issue 1.4, November 1997) we published an article on theissue of such supplements and the lack of evidence of positive benefits plus the very real risks ofharmful ones. The article provoked a number of positive and negative responses and we publishone of the letters received and our reply in this issue. We will be dealing with these issues furtherin future issues. In the Health section, we also include an article on the thyroid by Len Leshin andthe details of a very useful resource pack on heart defects produced by the UK Down’s HeartGroup.

The Research Update in this issue comes from the meeting held in the USA by the NationalDown Syndrome Society. The topics were wide ranging, covering issues from infancy to adult life,and from genetics and biomedical research to practical living and care issues.

International News will cover the activities of organisations around the world and we welcomecontributions from individuals and groups from all countries.

We hope you find this new publication interesting and informative. Please let us have yourcomments and ideas or contributions for future issues.

Sue Buckley

Getting the culture right

Why inclusion?Why should you, as a headteacher, schoolgovernor, teacher or parent, be concernedabout how well your school is meeting theneeds of children with significant specialeducational needs?

Firstly, because the evidence is that theindividual schools who are the most successfulat including and educating these children arealso the best schools for all the other childrenin them (1).

Secondly, where whole education systems haveshifted to be fully inclusive and to provide forall children within mainstream schools, theyreport that the quality of education hasimproved over time for all children (2).

The implication of these statements is that ifwe want our schools to provide the bestpossible education for all our children we needto explore what makes the inclusion ofchildren with significant special educationalneeds successful. We also need to ask whymainstream school systems improve whenchanging to successfully meet the challenge ofeducating these children.

The first part of the article provides guidelinesto good practice in developing the inclusiveschool, considering the importance of the roleof the Headteacher and managers indeveloping school philosophy, values andculture, school organisation, staff training andthe management of resources. We thenconsider the role of the teacher in developinginclusive classrooms and finally the role of allthe pupils in developing peer support.

Developing inclusive schoolsFor us, the opportunity to go to a school in thecommunity in which you live, with the otherchildren who live in your neighbourhood,regardless of disability or special educationalneed is a human rights issue. We do not expect

all readers to agree with us but we do hopethat this article will challenge some of thecurrent assumptions about the roles of schoolsin our society and that it will provokediscussion with your staff and colleagues.

In this article we will explore these issues,sharing the experiences that we have gainedfrom developing inclusive placements forchildren with Down syndrome in the UK overthe last ten years - children who wouldotherwise have been placed in special schools.During this time we have learned a great dealabout the school factors which lead to successor failure. With other colleagues in The SarahDuffen Centre and in the Department ofPsychology, University of Portsmouth, we havealso been studying the cognitive, social andbehavioural progress of these children ininclusive placements in some detail. This workhas relevance to a wide range of children andwill be reviewed in part 2 of this article.

We are psychologists specialising in workingwith children with moderate to severe learningdifficulties and between us we have some 45years of experience. However, until we becameinvolved in the implementation of the 1981Act in the late 80’s, all our experience hadbeen in special education settings.

Promoting mainstreamingThe last ten years have been the mostrewarding and exciting of our careers. We havebeen most impressed by the ways in whichchildren with Down syndrome and significantspecial needs have been welcomed in themajority of mainstream schools and by theskills, enthusiasm and professionalism of themajority of mainstream teachers with whomwe have worked. We have seen successfulplacements and great progress for the majorityof the children during most of their schoolyears. Some have had good and badexperiences as they have moved up the schooland we will return to the reasons for this laterin the article.

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INCLUDING CHILDREN WITH DOWN SYNDROME

Sue Buckley and Gillian Bird

The first part of a two part series on successful inclusion in mainstream education.The next part will appear in the next issue of Down Syndrome News and Update.

Down Syndrome News & Update, Vol.1, No. 1, pp 5 - 13.© Copyright 1998 The Down Syndrome Educational TrustPrinted in Great Britain. All rights ReservedISSN: 1463-6212 (1998) 1.1

We have been involved in the direct support ofmany individual children from the start oftheir school careers through to secondaryschool. We have also provided INSET trainingaround the country and offered advice onindividual placements at particular points intime. Much of the content of this article drawson our extensive opportunities to learnalongside the teachers who are successfullyincluding and educating children withsignificant learning difficulties or disabilities intheir classrooms (3).

At the start of our involvement withmainstreaming, we made links with researchgroups and education programmes in othercountries in order to learn from theirexperience. We are confident that ourexperience is valid as success or failure in ourplacements has been the result of the samecriteria reported by others in places wherethey are further down the road towards fullyinclusive education systems.

We use the term mainstreaming deliberately todescribe our early experience. When we beganto ask schools to accept a child with severelearning difficulties in their school, we wereasking them to take a child with the support ofan untrained Learning Support Assistant (LSA)into the regular classroom environment withlittle or no preparation. The teacher had to tryto meet this child’s needs without time tothink about changing the classroomenvironment or teaching styles or to learn newskills. This is what our American colleagues inMadison, Wisconsin call the “dump and hope”phase! In Madison they closed their lastsegregated special school site in 1976 (4) sothey have more than twenty tears ofexperience to draw on.

Moving to inclusionInclusion is more than mainstreaming. It isthe result of rethinking the role of educationand usually requires a change in school andclassroom culture and organisation.

Over time we have seen a shift in the UKtowards the development of inclusive schoolcultures but this is still mostly becauseindividual schools have developed their skillsand changed their beliefs about the role ofschools. It is rarely the result of planning for aninclusive system by Local EducationalAuthorities. In these inclusive schools there ismore awareness of the individual needs of allchildren, more flexibility in the curriculum anda valuing of diversity. This shift has beenparticularly noticeable over the last few years,since the establishment of SENCO’s and theimplementation of the Code of Practice,

following the special needs legislation in the1993 Education Act.

There are very few UK Education Authoritiesthat have actually embraced an inclusivephilosophy and actively managed change. TheLondon Borough of Newham is one examplewhere an inclusive policy is in place. It hasreceived much of its impetus from effectivelobbying by parents of children with disabilitiesand special educational needs. The Wisconsinchanges were also driven by parent pressure inthe early years. In both the Newham and theWisconsin situations, change has progressed inthe same way. Both replaced segregated specialschools with special units or special resourceson some mainstream sites. Both found thatthese could be phased out over time as allteachers increased their range of skills and allschools became more confident at meeting avariety of needs. The specialist skills of theteachers who used to work only on segregatedsites become available to all children in thesystem and to colleagues and this helps theprocess of change as well as benefiting manymore children.

Whole school issues and therole of the headteacher

School philosophy and cultureThe schools that we would rate as the mostsuccessful have established an inclusive culture.They have thought about and explicitlyembraced a philosophy that values all childrenequally and celebrates the diversity of thehuman population. They believe that the roleof education is broad and would accept LouBrown’s definition that it is the task of schools“to prepare children to live, work and play inan inclusive society”. (Lou Brown is theProfessor of Special Education, University ofWisconsin, Madison(3)).

Schools as agents of changeA school has the opportunity to establish acommunity that demonstrates the valuesthat we might wish to see expressed in thewider society outside school.

We can use the example of disability toexplore this argument further. It is commonfor adults with disabilities to observe that theirlives are far more restricted by the attitudes ofthe non-disabled majority towards them thanby the limits actually imposed by theirdisability. One reason for this may be the lackof contact with people with disabilities thatmost of the non-disabled population have as aresult of mainly segregated schooling and

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segregated services for children and adults withdisabilities. This has lead to a society wherethe majority of individuals do not understandthe needs of people with disabilities nor feel atease in relating to or working with them.

The decisions that are made about the designof our schools, work places, transport andcommunication facilities take little account ofthe needs of those with physical or sensoryimpairments. Access to the daily opportunitiesthat the rest of us take for granted is thereforedenied to most children and adults withdisabilities. Until recently, all children withidentifiable disabilities experienced this lack ofaccess from earliest childhood, when they weredenied the opportunity to benefit from thesame educational experiences as otherchildren. This resulted in two maindisadvantages - a restricted access to thecurriculum and no opportunity to be part ofthe ordinary social world of childhood. Inother words, most children with disabilitiesexperienced both social and educationaldeprivation during childhood, leading to socialisolation, under achievement and impoverishedlives as adults.

If all children are able to grow and learntogether, the child with special needs has theoptimal opportunity to reach his or herpotential, to make friends and to becomefully integrated into mainstream society.

The other children have the opportunity tolearn to understand the effects of disability andto learn how to care for and support childrenwith a variety of needs. They will learn that allchildren with disabilities are children first,with the same psychological, emotional andsocial needs as all other children. Like the restof us, significant relationships with others arecentral to their well-being as children andadults and the opportunity to establish andmaintain friendships during childhood isimportant preparation for successfullydeveloping these relationships in adult life. Thenon-disabled students will become betterfriends, neighbours, workmates and bosses forpeople with disabilities in their adult lives.

This may require schools to recognise thatsocial development should be an explicitpart of the curriculum, giving children theopportunity to think about friendships,loneliness and social isolation (5).

The experience of communities who have hadfully inclusive education systems for ageneration is that these gains do occur.Attitudes do change throughout thecommunity and opportunities become more

equal. More young adults with significantdisabilities are able to work, live independently,establish their own families and enjoy the sameleisure facilities as everyone else. More of theyoung adults who, though not disabled, were inthe less able third of the mainstream schoolpopulation in terms of academic progress, alsodo better in these inclusive school systems.The skills developed by all teachers as they arerequired to meet the educational needs ofthose with the most significant difficultiesbenefit many others who have always been inthe mainstream but not always had their needsmet. Teachers learn how to address social andbehavioural needs more effectively and toextend access to the curriculum to a widerrange of children.

However, these benefits will only be theoutcome if inclusion is done well.

The individual educational needs of all childrenmust be met as well as they would be inseparate facilities. Mixing with children withsignificant disabilities can result in otherchildren becoming less tolerant andsympathetic if the experience is unpleasant forany reason, so how do we move forwardsuccessfully?

Strategies for success

Valuing diversity and building self-esteemThe successful schools see all their pupils asindividuals and value them equally. Theyencourage their students to recognise thatwe are all individuals and to recognise thatwe all have strengths and weaknesses.

Healthy adjustment in adult life is likely tocome from a realistic appraisal of oneself,therefore setting goals that are achievable andappropriate and which lead to a positive selfconcept - feeling good about oneself. Buildingpositive self-esteem in all pupils should be aprimary goal for all teachers (6). This is noeasy task. It means helping all students toidentify their strengths and their limitations sothat they choose to develop their strengths.It means that those schools with authoritariancultures need to change, and that ridicule andhumiliation of children should have no part inthe school culture or in any teacher’srepertoire. One of us (SB) has had theopportunity to travel extensively andexperience the atmosphere in schools wherebuilding self-esteem is a primary goal. We doexperience this in some of our UK schools, butnot to the extent that is common in parts of

Including Children with Down Syndrome 7

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North America and Canada.Our experience in the UK is that the cultureand philosophy in schools can be verydifferent, even in neighbouring schools. We canillustrate this with a real example. Thestudent’s name has been changed to preserveconfidentiality in this and later case examples.

Several years ago one of us (SB) received aphone-call from a distressed parent, asking ifone of us could attend a review meeting withher and her husband, as she feared that theschool no longer wanted her daughter as apupil. Her daughter Sally was 13 years old andhad Down syndrome. She had received all hereducation to that time in mainstream schoolwith full time non-teaching support provided.She was nearing the end of her second year insecondary education and the school wereexpressing considerable concern about herprogress both educationally and socially.

SB arranged to arrive at the school in time tomeet Sally and to talk with the staff before thereview meeting. It was quickly apparent thatthe staff had no positive commitment tomeeting this student’s needs. The Head ofLearning Support made clear to SB that sheand her staff did not have the time todifferentiate work for Sally, seeing this aninappropriate use of their time. They were alsoconcerned that she was becoming increasinglysocially isolated. They did not want advicefrom us on how they could change this state ofaffairs and make the placement successful.This would of course mean accepting that theschool might be failing Sally. Their perceptionof the situation was that Sally should not be intheir school. All the difficulties they wereexperiencing were the result of her disabilityand she should be in a special school. Theyeven expressed negative views about her in herpresence and seemed to have no sensitivity tothe probable effect of their attitudes towardsher on her progress or happiness within theschool.

The review meeting was a formal affairinvolving the Headteacher, Head of LearningSupport and five other professionals from localand county LEA’s and chaired by the DeputyHead. The Head was visibly annoyed by SB’spresence and did his best to prevent her fromcontributing to the discussion. The meetinghad clearly been called with one aim - to agreeto remove Sally from the school and put herwhere this Head made plain he thought thatshe belonged - in a school for children withsevere learning difficulties. He seemed to havelittle understanding of the social influences onany child’s performance and progress. He sawSally’s present difficulties in his school as

entirely her problem, the result of herdisability. He certainly did not want anyadvice. For him, the last straw was when SBsecured the agreement of the LEA to continueto the same level of LSA support for Sally ifwe found her another mainstream placementas this clearly implied that she believed thisschool was failing Sally.

With Sally’s parents, SB approached anothermainstream school near her home. This schoolexpressed a willingness to accept her and avisit was arranged. The contrast in the twoschool’s philosophies and cultures wasextreme. The Headteacher of the new schoolgreeted SB warmly and informed her that hewould be delighted to accept Sally in hisschool. He explained that this was acommunity school - in name and in philosophy.He wanted all the children in theneighbourhood to be welcome in his schooland had been developing his learning supportresources accordingly, since coming to theschool as Head four years earlier. He then tookSB to meet the Head of Learner Support. Sheexplained that she had no previous experienceof teaching a child with Down syndrome butthat she had given some thought to our requestand was looking forward to supporting Sally inthe school. She added that she had consideredwhat she would have wanted if Sally had beenher daughter and knew that she would havewanted an education with mainstream peerswithin her own community for her.

At this point SB knew that this placement wasgoing to be a success. She was then askedabout Sally’s achievements in literacy andnumeracy and was told that there were otherstudents of her age working at the same levelso she could join their groups. The Head thenasked SB what year group Sally should join. SBsaid that she was unsure as Sally was probablyless socially and emotionally mature than othergirls of her age. The Head laughed and saidthat some girls of her age were more like 18year olds in social and emotional development,others more like 9 year olds - he felt sure shewould be fine in her correct year group!

At this time, we had little experience ofsecondary schools and this case made us feelthat we were on a steep learning curve! SB wasquite shaken by the contrast in the attitudesand beliefs of the two headteachers and theirstaff. One school had told her that Sally couldnever fit in, as she was so different from theirother pupils. Another school just down theroad had no problem seeing Sally as happilyfitting in to their school community andpointing out that her needs were not differentfrom those of some of the other mainstream

pupils in the school, either academically orsocially. Could the populations of children inthe two schools really be that different or wasit the way the staff perceived their childrenthat was different?

The evidence on the school intakes supportedthe latter view. We cannot help worrying aboutthe educational experience of many of theother children in the first school, not just thoseless academically able, but also those withsocial and emotional needs. In both theseschools it seemed that the Headteacher wasdetermining the culture and values of thewhole school, for good or ill.

We would ask all Heads and managers toreflect on their own personal attitudes todisability and to children with special needs. Itis likely that your personal attitudes and youremotional reactions to disability will beinfluencing the decisions that you are makingand will be apparent to your staff and to yourpupils. You might also reflect on whateducational and social opportunities you wouldwant for your own child, if you had a childwith a disability.

Staff attitudesIn our experience, the single most importantpredictor of success for placements is staffattitude. If the staff believe that the child isappropriately placed in their school, theplacement will be a success. We have seen verydisabled children, with significant dependencyneeds, flourish in schools were they arewanted. We have seen children with obviousdisabilities but academic progress within thenorms for their age, fail in schools that do notwant them - or should we say failed by schoolsthat do not want them.

The evidence in favour of the importance ofstaff attitude is particularly striking when apupil flourishes in one school but has amiserable time in the next school.

We have had this experience with severalchildren whom we know well. One youngfriend of ours, Gerry, is now 11 years old.Gerry has Down syndrome. He went to thesame mainstream nursery as his brother andthen into the infant school where he madeextremely good progress. The school had givenmuch thought to meeting his needs and thestaff were rightly proud of his achievements.

In Gerry’s last year in this school, his classteacher was sharing her experiences at atraining day at our Centre. She described how,as Gerry’s strengths were his literacy skills and

his computer skills, he was spending some timeeach week helping children in the receptionclass and in Year 1, listening to them read andshowing them how to use the computer. Thisteacher had deliberately constructedopportunities to build Gerry’s self-confidenceand self-esteem. These situations also showedthe other children that, despite his disability,Gerry had strengths and could help others aswell as benefit from their help at other times.His literacy skills were within the range of hisclassmates.

Imagine our concern when he moves to thejunior school with these peers the very nextterm and the new class teacher phones usexpressing the view that he has no place intheir school - he should be in a school forchildren with severe learning difficulties!Before long Gerry was showing his distress bybedwetting, something he had not done sincethe age of three years. We were able toimprove this situation somewhat but itcontinued to be less than satisfactory by ourstandards.

At this time, we were supporting another ladwith Down syndrome of the same age andwith a very similar profile of abilities andspecial needs in a nearby school. The contrastwas dramatic. This junior school had twochildren with Down syndrome on the schoolroll and all the staff were immensely proud ofthe progress of both of them. We wouldobserve that the two schools had differentatmospheres and different attitudes to all theirchildren, confirming what we had read andhave stated at the start of this article.

The schools that are best for all children arethe best for those with very special needs.

Some headteachers might reflect further onthe significance of this as it implies thatschools who are not good at meeting the needsof special students may not be the best schoolsfor all the other children in them either.

We could give more examples of this kind,where a child has made very different progressafter a school move and has been perceivedand described very differently by Headteachersand teachers in the two schools.

The message from this section is threefold.Firstly, successful schools clearly recognise thewide range of educational needs present in anyyear group in any school population and theyacknowledge that it is their job to meet thiswide range of educational needs. Secondly,successful schools develop a culture that iscaring and supportive of all in the school


community, aiming to value diversity and tobuild positive self-esteem for all its pupils.Thirdly, successful schools appreciate theeffect of being valued and feeling liked by staffand other pupils on the progress of all children.

School organisation and the use ofresourcesIf schools are to succeed in meeting thiswide range of needs successfully, there needsto be flexibility within the classroom, withinthe year group and across year groups.

Flexibility in the classroom is easier to achievein the primary years when small group workingis often the norm within the class. This enableschildren to work at their own pace within theclass. A statemented child in the class with thesupport of an LSA can provide a bonus forother children in the class. This was one of thethings that we learned as soon as we began toplace children with Down syndrome in infantschools with a full-time LSA. The LSA couldoften work with a group of children, all ofwhom benefited from the extra help.

After a year, we suggested to our LEA that itwould be cheaper to give every reception classan additional LSA than bother to try assessingchildren for Statements before they were inschool. There are only a finite number ofdifferent special educational needs and weargued that all schools should be able to meetthe needs of the four and five year olds in theircommunity, with an LSA in the class andappropriate peripatetic advisory or teachinginput. We also argued that assessing the child’seducational needs once they were in a schoolenvironment might lead to more valid anduseful Statements. Our advice was not taken!

We are not in favour of special classes or unitsas we feel these are not usually necessary andcarry the risk of segregating children again.They also do not recognise that all children arechildren first, regardless of disability or otherspecial needs. There is no reason why any childcannot be a member of an ordinary class, inthe correct year group, even if his or hereducational programme has to be provided onan individual or small group basis.

This is the model that we see working well inmany secondary schools. All children aremembers of ordinary classes and ordinary tutorgroups even when they have considerablespecial educational needs. Their educationalprogramme is then worked out for them as anindividual, just as it for the other pupils as theymake their choices of subjects that they wishto study. It then becomes no more stigmatising

or isolating to have a lesson in the LearningSupport Centre than it does to study Spanishrather than physics. Nor is it any more difficultto staff an expert Learning Support Centrethan an English or Mathematics Department.

In Wisconsin, regular schools not only haveexpert special educators on their staff but alsospeech and language therapists,physiotherapists and occupational therapists aswell. This means that their expertise isavailable to all children in the community, in amuch more accessible way than in the UK atpresent.

While we try to support children’s learningwithin the classroom in the early years, toensure maximum social integration and accessto the curriculum, there should be no rigidrules about this. Every school, especially everyjunior school, would benefit from a learningresource centre, where children can have thebenefit of individual or small group work.

One of the best examples of planning such acentre that we have come across was in asecondary school, where the learning resourcecentre had been deliberately sited right in thecentre of the school. In addition to providingfor those with special educational needs, ithoused the school’s best computer resources sothat it really was a learning resource for allpupils. This meant that any pupil could use thecentre without embarrassment and that onewas as likely to find a gifted child workingthere as a child needing special additionalteaching or adapted resources.

The role of Learning SupportAssistantsThe success of many of the placements thatwe have supported has been due in large partto the skill and commitment of the LSAassigned to support the child. However, manyof the schools that we have worked with donot know how to support and make full use oftheir LSA’s. While recognising that the work ofLSA’s is critical to the access to mainstreamschool for many children in the UK at thepresent time, we are building a system on thecheap as most are poorly paid, have minimaltraining and no career progression open tothem.

This situation highlights the lack of real policycommitment to or planning for inclusion in thiscountry. Some other countries, Italy forexample, provide extra training for qualifiedteachers so that they can become facilitatorsfor inclusion. This recognises the importance ofchanging the whole philosophy and culture in

many schools and in classrooms, if they are tobecome truly inclusive communities. Is there amessage here for our SENCO’s and theirtraining?

Many of our children would not have made theacademic progress that they have without theone-to-one teaching provided by their LSA.However, striking the right balance betweensupporting the child and encouragingindependence is not easy. Too much one-to-onesupport for learning can make the childdependent on adult support. The child needsto learn as part of a group and to workindependently. Too much adult support canalso make the child seem more different to theother children than is necessary and preventthem offering support to the special child inways that may come quite naturally to thechildren.

In some schools, LSA’s have a very difficulttime. They have no professional training orstatus and are sometimes not treated well. Wehave been to schools asking for advice for achild, where the LSA was not allowed to talkwith us, the clear message being that she couldnot have any useful views and must not beallowed to get above her station! Morecommonly, we find LSA’s who are given toomuch responsibility for the education of thechild they are supporting either because theschool feels no commitment to the child orbecause they do not know how to plan aneducational programme for them. The classteacher must recognise that he or she has theresponsibility for the education of astatemented child and that they have the sameright to be a full member of the class as anyother child.

Another difficulty an LSA can encounter is theresponsibility of knowing that a child is notreceiving an appropriate educationalprogramme in the school but not having thestatus to do anything to change the situation.They may also be the main link betweenschool and family, party to the concerns ofboth sides but without the power to solve anyconflicts of opinion. This can be very stressfulfor the LSA.

These are matters for the Headteacher to bealert to and in many schools the status of theLSA’s has improved. Many are highly valuedand well supported by their SENCO’s.Training programmes for LSA’s are improving.

Working with parentsMany parents of children with specialeducational needs have become experts. They

will be experts in their knowledge of theeffects of the child’s disability on theirdevelopment and experts in teaching their ownchild. Parents of children with identifiabledisabilities often join parent support groupsand quickly access a wide range of informationon their child’s condition.

Parents are likely to have been activelyrecruited into early intervention programmesby the time their child was one year old. Inthese programmes they will have been treatedas equal partners by the professionals andexpected to be their child’s main educator.Most early intervention programmes recognisethat home is the most significant learningenvironment for any child’s development andthat parents can be the child’s best teachers, sothey actively pass on their skills and knowledgeto parents. Parents choose learning goals andset priorities based on their view of the child’sneeds and their awareness of the wholefamily’s needs and resources.

This parent-professional partnership approachhas been very successful in pre-school yearsbut parents often find that schools do notknow how to form the same effectivepartnerships. Teachers in the mainstream arenot always good at forming a positiverelationship with parents of children withspecial needs. Teachers do not always recognisethe contribution that parents can make inhelping the teacher to realise the child’s fullpotential, if only teacher and parent couldwork together.

Most parents know that their child will benefitif they continue to teach them or help them toconsolidate skills out of school hours, but theyneed to know the teacher’s current goals forthe child. They may also need materials orideas for activities to be provided from school,though often parents could supply materialsfor use in the classroom. We know many whocreate wonderful learning materials and gamesat home that children in the class would allbenefit from. Bringing in such games can raisethe self-esteem of the special child, as they areused and enjoyed by others in their class.

Many parents have valuable specialistknowledge of their child and their condition toshare with their child’s teacher if given theopportunity. We often meet frustrated parentswho cannot offer the information they knowthe teacher would find useful because theteacher will not accept it. It seems that manyteachers do not know how to establish apartnership with parents. Too often, we comeacross situations where the teacher seems tofeel threatened and to fear loss of face if he or


she admits that parents could know somethings that she does not. This is an importantissue which may need to be addressed bytraining and staff development in manyschools.

Peer supportIn our experience, many schools fail torealise that the biggest resource that theyhave available to them to support childrenwith special educational needs is the otherchildren in the school.

If a child needs more help, the first reaction isto send for another adult, either an assistant orexternal specialist. The use of strategies suchas peer tutoring, cross-age tutoring, co-operative group learning and team projects isnot as widely developed in the UK as in NorthAmerica. All children benefit from theseactivities as they all learn how to teach and toco-operate with others. These are very valuableskills to take to the adult work place (7).

Explicit use of peers to prevent social isolationand to build circles of friends increases allchildren’s sensitivity to how others feel ifignored or actively rejected. Manyacademically able children do not make friendseasily, so all children in the school will benefitwhen involved in projects to help friendships.Most teachers would benefit from sometraining in the techniques of developing peersupport systems for teaching and for socialsupport.

BehaviourEffective behaviour management is anotherarea where some staff training would bebeneficial in the majority of schools we visit.While children with learning difficulties maybe particularly at risk for developing behaviourproblems as a result of frustration or failure,any child can present such difficulties. In thepast few years, a variety of good writtenresources to support good behaviourmanagement have become available.

Like developing the school culture and values,this is a whole school issue. All staff need tohave consistent, positive behaviourmanagement strategies, not just the specialneeds staff.

Staff trainingWe have mentioned staff training a number oftimes already. Staff development is clearly theresponsibility of the Headteacher and in mostschools, teachers are able to access a variety oftraining opportunities. However, if you want tochange the school culture and become an

inclusive school, creating the optimal learningenvironment for all, then some whole schooltraining will be necessary. You must have yourwhole school staff signed up to creating thesocial culture you are aiming at (8).

In our experience, training sessions for thewhole staff team are extremely valuable ingiving an opportunity to debate these issuesand make them explicit in everyone’s thinking.You will be very fortunate if all your staff havepositive attitudes towards a truly inclusiveculture, but it is useful for the whole staffteam to be aware of the attitudes andprejudices of colleagues. It can also be salutaryfor those with negative views to realise thatthey are in a minority. In addition to aprogramme of training for your whole staffaimed at developing an inclusive culturethroughout the school, for the benefit of allyour pupils, it is important to consider thepreparation of staff and other pupils for thearrival of a pupil with a particular disability.

We find that a session on Down syndrome, forexample, for the whole staff team, before thechild arrives at school, is very helpful inpreparing the way for successful placement.We can answer questions about the condition,often clearing away myths, and we can explainhow and why this placement will really benefitthis child. It is not appropriate to expect thespecial needs staff to educate the rest of thestaff team or to expect them to succeed in anatmosphere where a majority of staff do notthink that they have any responsibility forchildren with special needs in the school.

Preparation of pupils is also important if achild with obvious special needs is coming intoa school with no other similarly disabledpupils. We would suggest both a whole schoolapproach and a class approach. The wholeschool approach might use an assembly tomake clear to all children the welcome andsupport expected for the child, and thereforereinforcing explicit awareness of the school’svalues. The class approach can includediscussion of explicit strategies for welcomeand for peer support for the child as well asgiving children an opportunity to be informedabout the specific disability so that they canunderstand the child’s needs and respondsensitively.

Financial ResourcesWe have deliberately left the issue of costsuntil the end of the article as, while werecognise that additional support for childrenwith special needs costs money, our valuesystem would lead us to argue that children

with special needs have the same right to sharein the community’s resources as all otherchildren. They have a right to be part of theordinary world of childhood in theircommunity - and that means a right to go toschool with the children in theirneighbourhood.

On a national, or on an area educationauthority scale, it does not cost more to putthe resources into mainstream rather thanspecial segregated school. In fact many wouldargue that it is a fairer use of specialistresources (since, when specialist teachers andtherapists are moved to mainstream sites, theirexpertise is available to many more children).But this requires a full commitment toinclusion and a total reorganisation of theeducation system. It certainly costs more toinclude statemented children while stillmaintaining special schools.

We would argue that the challenge for aneducation authority or a school is to make thebest use of its resources in an equitable way forall its pupils. Lack of money should never bean excuse for not allowing access to astatemented child - this amounts todiscrimination on the basis of disability (as dothe other clauses allowing exclusion in ourlegislation!).

ConclusionsIn this article, we have emphasised the effectof social opportunities on the development ofall children and the role of the school inproviding a social world that promotes thevalues we would like to see expressed in oursociety at large. We have argued that such aschool will provide the environment for allchildren to flourish, socially, emotionally andacademically.


References1. Ainscow, M (Ed.) (1991) Effective Schools for All. London: Fulton.2. Brown, L., Long, E., Udvari-Solner, A., Schwartz, P., VanDeventer, P., Ahlgren, C., Johnson, F.,Gruenewald, L. & Jorgensen, J. (1989) Should students with severe intellectual disabilities be based in regularor special education classrooms in home schools. Journal of the Association for Persons with SevereHandicaps, 14(1), 8-12.3. Bird, G. & Buckley, S. (1994) Meeting the Educational Needs of Children with Down Syndrome: Ahandbook for teachers. University of Portsmouth.4. Brown. L. (1994) Inclusion in Education and Employment. Paper presented at the 5th World Congress onDown Syndrome. Orlando, USA.5. Roffey, S., Tarrant, T. & Majors, K. (1994) Young Friends: School and Friendship. London: Cassell.6. Lawrence, D. (1996) Enhancing Self-Esteem in the Classroom. Paul Chapman Publishing.7. Johnson, D.W. & Johnson, R.T. (1994) Learning Together and Alone. Boston: Allyn & Bacon.8. Ainscow, M. (1993a) Teacher education as a strategy for developing inclusive schools. In R. Slee (Ed.) IsThere a Desk with My Name On It? The Politics of Integration. London: Falmer

BibliographyAinscow, M., Hopkins, D., Southworth, G. & West, M (1994) Creating the Conditions for SchoolImprovement. London: FultonClark, C., Dyson, A. & Millward, A. (Eds.) (1995) Towards Inclusive Schooling. London: Fulton.Carpenter, B., Ashdown, R. & Bovair, K. (Eds.) (1996) Enabling Access: Effective Teaching and Learning forPupils with Learning Difficulties. London: FultonGarner, P., Hinchcliffe, V. & Sandow, S. (1995) What Teachers Do: Developments in Special Education. PaulChapman Publishing Limited.O’Brien, J. & Forest, M. (1989) Action for Inclusion. Inclusion Press.Wong, B. Y. L. (1996) The ABC’s of Learning Disabilities. Academic Press.

The Authors:Sue Buckley is Professor of Developmental Disability at the Department of Psychology at the University ofPortsmouth, UK. She is also Director of The Centre for Disability Studies at The University of Portsmouth andDirector of Research and Information Services and at The Down Syndrome Educational Trust. She also serves asa Non-Executive Director of the Portsmouth and South East Hampshire District Health Authority and on theboards of the European Down Syndrome Association and the International Down Syndrome Federation.

Gillian Bird is Director of Consultancy and Education Services at The Down Syndrome Educational Trust andhas been been supporting children with Down syndrome in mainstream school placements for the past 10 years.

Both Sue Buckley and Gillian Bird regularly provide consultancy and training for schools and LEA’s throughThe Down Syndrome Educational Trust.

REVIEW: A NEW BOOK FOR TEACHERSAND ASSISTANTS

Gillian Bird

“Children with Down’s Syndrome: A Guide for Teachers and Learning SupportAssistants in Mainstream Primary and Secondary Schools” by Stephanie Lorenz

Stephanie Lorenz has produced an excellent new resource for mainstream schools with pupilswith Down syndrome, written to be useful for children of all ages and suitable for secondary aswell as primary schools.

Chapter 1 includes a description of the causes of Down syndrome and the effects the syndromemay have on children’s physical development, learning and behaviour.

Chapter 2 explains the history of inclusion to practitioners with models for including pupils intheir community schools and details of sources of support and advice for the teacher and otherschool staff. This leads into a more detailed Chapter 3 focused on models of support, withrecommendations for including the child in school life, planning IEP’s, and discussion of types andlevels of support for the pupil and the teaching staff.

Chapter 4 will help teachers to understand the children’s and families pre-school experiences.Typical stages of children’s motor skill development, self help skills and language developmentduring the first few years at school are described. Difficulties remembering and sequencinginformation, due to poor short-term memory function, particularly for information that has beenheard rather than seen, are highlighted with practical techniques for aiding and improvingmemory.

Chapter 5 provides clear, straightforward guidance for differentiating the curriculum, followed byadvice for the teacher on how to include the child with Down syndrome in whole classinstruction. A summary of effective teaching approaches for presenting information, in addition torepeated or simplified verbal instruction, for example, the use of overheads, flipcharts, objects,modelling by other pupils, written lists and other visual supports is likely to be particularly usefulto teachers and assistants. Methods for overcoming recording difficulties that typically hold backthe children’s abilities to demonstrate their understanding are included.

Chapter 6 focuses on developing literacy and numeracy. These are vast subjects across the age andability range the book covers but sufficient information is included to encourage teachers todevelop teaching programmes for their individual child with Down syndrome, whatever his or herage, level of skill and understanding. Chapter 7 discusses behaviour management, includingcauses, prevention and sexual development.

Chapter 8, entitled ‘working with the whole school’, offers reassuring information to parents andteachers, with guidance for the whole school. It offers useful information for parents, LEA’s,teachers, assistants, and mainstream peers, including establishing circles of friends, peer tutoringand student support teams. Chapter 9 is dedicated to working with parents and with outsideagencies and includes descriptions of the roles of the speech and language therapist, the learningsupport teacher and the educational psychologist.

Chapter 10, a vision for the future, comments on the inequalities for children’s access tomainstream education across the country, the need to improve provision and the need for accurateand up-to-date information for all concerned, with implications for training and LEA policy.This book is essential for schools new to mainstreaming children with Down syndrome and willoffer encouragement and fresh ideas for teachers and learning support assistants that have beeneducating children in their community mainstream schools successfully for a number of years.

The Author: Gillian Bird is Director of Consultancy and Education Services at The DownSyndrome Educational Trust and has been supporting children with Down syndrome in mainstreamschool placements for the past 10 years.

“Children with Down’s syndrome: A Guide for Teachers and Learning Support Assistants inMainstream Primary and Secondary Schools” by Stephanie Lorenz in available from The DownSyndrome Educational Trust. It is priced at £12.99 plus £2.00 postage and packing (Order ref.BOOK/0510).

Review: Evaluation of Educational Placement 15

REVIEW: AN EVALUATION OF EDUCATIONALPLACEMENT FOR CHILDREN WITH DOWN’S

SYNDROME IN THE SOUTH DEVON AREAGillian Bird

This 90 page document provides detailed information about the abilities, skills, educationalattainments, placement and inclusion of children with Down syndrome in south Devon. 13children with Down syndrome attending their local mainstream primary schools were reviewed toevaluate educational attainments and levels of integration. 9 children with Down syndrome, in thesame primary age range, who attend schools for children with learning difficulties (severe and/ormoderate) in the same geographical area, were also reviewed to look at educational attainmentsand levels of learning abilities. A comparison of the achievements of both groups is reviewed andproposals to enhance future inclusion in mainstream schools for this group of pupils are made.

This publication will be of particular interest to educational psychologists, advisers and teachers. Itprovides them with descriptions for a sample group of children from one area placed inmainstream and special schools, using a range of measures for assessing intellectual ability, reading,communication, academic skills, behaviour, differentiation and integration. As well as useful data,there is information from structured interviews with teaching staff, categorised into areas ofsuccess and areas of difficulty, and from interviews with parents. Parents with knowledge ofassessment and descriptive attainment terminology will also find the report interesting.

For all readers, the report provides information that can be used as a form of ‘benchmarking’.Although the size of the group is small there is little else like it, hence its particular value forpsychologists, especially when combined with the assessment and attainment information from DrAngela Byrne’s longitudinal research on 24 children educated in mainstream schools inHampshire, West Sussex and the Isle of Wight (University of Portsmouth, 1997, details andrelated publications available from The Down Syndrome Educational Trust).

The research cannot be taken as a direct comparison between types of school provision - suchresearch would be inappropriate in the light of current legislation as the children should be inmainstream schools, within certain flexible parameters and parental choice. Jane’s informationoffers supports for this in South Devon at least, in that the majority (but not all) of the childrenattending special schools were functioning within the lowest ability range for children with Downsyndrome, and that 6 out of 7 of these children had significant medical problems. However, thereport later states that in the special schools the children with Down syndrome were generallypart of the groups of children with most advanced play skills (in the special school population),organising games and activities with other children and playing in a similar way to theircounterparts in mainstream. Many of the other children in the playground had very limited playskills, were often isolated in their play, did not interact with other children and were ofteninvolved in repetitive, ritualistic behaviour, involving no interactions with other children. Thespecial schools had lower academic expectations with consequences for teaching and lowerperformance. This is not a new finding, but replicates those from studies conducted in earlier daysof mainstreaming, when children’s achievements (with Down syndrome) in different types ofschool placement were investigated.

Jane Beadman describes the needs of the mainstream schools, their strengths and weaknesses,with a clear summary and detailed, specific recommendations. These cover the areas of resources,equality of opportunity (for children with Down syndrome and for children with similar learningdifficulties who do not have Down syndrome), training for staff, support services, teachingresources, monitoring, working with parents and the whole school and managing behaviour.Educational psychologists and others interested should read the report for themselves andrecommend it to education authorities as they provide a useful checklist for helping to developgood practice.

“An evaluation of educational placement for children with Down’s syndrome in the southDevon area” is published by Devon County Council, 1997. It is priced at £6.00 per copy+£1.00 postage and packing. Make cheques payable to Devon County Council and send, withorder, to Mrs J Beadman, Educational Psychologist, Psychological Service, New Devon South,Kennicott Lodge, Ashburton Road, Totnes, Devon, TQ9 5JY

The Author: Gillian Bird is Director of Consultancy and Education Services atThe Down Syndrome Educational Trust and has been supporting children with Down syndrome inmainstream school placements for the past 10 years.

AimTo investigate the social development ofchildren with severe learning difficulties inspecial schools as compared with those inmainstream schools.

Summary of findings for this casestudy• Children with severe learning difficulties

(SLD) on a mainstream site showed an ability to work co-operatively and autonomously for up to 300% longer than their peers in a special school.

• They were able to form groups and pairs spontaneously, distinguishing appropriately between companions for work and recreation.

• They changed to a self-determined activity within an agreed academic range after completing a given task.

• They had a classroom-day over two hours longer than their peers in special schools, whose timetables are constrained by difficulties of movement and physical care.

• A comparable group in a special school wereseen as being less mature than their peers and more dependent on adult help

• They were given little responsibility for their own belongings and equipment, or opportunities to make choices, take risks or determine activities.

• They had a complex, individualised curriculum with frequent changes of activityand groups often determined by the least able in the class.

Analytic frameworkThe framework for analysis was a set of readilyavailable indicators of social maturity:

• co-operating with a partner or group;• playing co-operatively during leisure time;• being aware of different adult roles;• reducing reliance on the teacher or learning

support assistant (LSA);

• looking after belongings and equipment;• working independently at a set task;• maintaining appropriate work behaviour to

finish a task;• concentrating and avoiding distractions;• choosing activities, food and personal care.

For analysis, these indicators were categorisedas:• the social maturity of the children;• social relationships with the staff• attitudes and practices of the staffStaff were asked to comment on theseindicators and to anticipate educationaloutcomes.

Classroom observationSocial maturityMost noticeable were the duration andfrequency of children working co-operatively ata set task. Most children on the mainstream(M) site managed several periods of 30minutes, but in the special (S) schoolintervention by the teacher was usuallyrequired after 10 minutes.

Spontaneous interactions between childrenwere rarer in S. M Children paired or groupednaturally, choosing different peers forrecreation and work. There were some highlyco-operative interactions.

Appropriate self-employment between taskswas rare on S site. Children usually chose soloplay with toys. Three children in S schoolexhibited uncooperative behaviour, and one onM site.

Opportunities for self-help and independencewere almost never offered to the S children,while the M group had to look after their ownbelongings and tidy work materials. Bothgroups chose their food, but S children atelunch in an appointed seat; the M children atelunch with chosen companions.

RESEARCH SUMMARY: THE SOCIAL DEVELOPMENTOF CHILDREN IN SPECIAL SCHOOLS

Denise Dew-Hughes

A research project commissioned by the Teacher Training Agency as part of theTeacher Research Grant Scheme 1996/97


17Research summary: Social development

“S staff had not considered that close personalrelationships could restrict social development”

Playtime on S site presented few opportunitiesfor organised, interactive or exploratory play,and children were not exposed to risk. Mschool play areas were more amenable to bothactive games and sociable chatting. Undirectedinteractions between children were frequent.

Social relations with staffOn M site there was a clear teacher-pupilrelationship, with formal use of titles. The LSAwas less didactic but still not maternal. Mutualrespect was noticeable and children’spermission was requested before inserting theirnames into the story-time reading. S childrencalled everyone except the headteacher bytheir first name.

Almost all the S children had physical contactwith the staff during observations, for comfort,physical care, help with dressing, hand-holdingor pats for praise. No M child had contact withthe adults, although the close physicalproximity was the same.

Practices and attitudesThe S school spent time on transport, physicalcare regimes, therapies and slower-movingmembers of the group, which reduced theclassroom day to three hours and 20 minutes.The M school had five hours and 25 minutesof available class time.

Much of this difference was accounted for bythe M children’s taking personal responsibilityfor moving themselves into, about and fromthe school - unaccompanied and with theirown equipment.

Teaching activities were frequently interruptedin S school by changes to individual timetables,medical visits to the classroom, withdrawalsfor therapy and visitors. The M schoolestablished a practice of non-interruptionduring teaching time which delivered a clearmessage to the children on the priority ofteaching and learning.

The M classroom language was moresophisticated. S laid much more emphasis onspoken praise; language was simple and direct,allowing for comprehension by the less fluentmembers of the class, and was oftenaccompanied by signing. M language was morechallenging; the following terms were usedfreely:

Maths take away, subtract, higher than,difference between, minus, total;Science vitamins, vibrations, flexible;D&T recite, recall, consider.

Staff impressionsStaff showed they were aware of thedifferences site placement made to education,particularly to the sensitive issue of outcomesat later Key stages.

Social maturityAll staff believed that children in specialschools:

• were “quite a lot less” socially mature than mainstream peers;

• became more mature when included in mainstream schools, responding “quite dramatically to the behaviour of other children”;

• had a flexible curriculum, allowing time for extra interpersonal and social skills teaching

Teachers initially said social immaturity waslocated in the disability. They then explainedthat it was probably caused by a lack of earlysocial interaction and a more protected homesituation.

“It can be both... they’re not given the samesocial interactive opportunities.”

“Parents probably expect less of children in asocial sense... they don’t interact as much atpre-school.”

All agreed that adult expectations were acontributing factor, as were the atmosphereand structure of the school. Several declaredthat they made unconscious assumptions aboutsocial maturity which delayed development.All recommended encouraging children to takeresponsibility for their own actions as a movetowards maturity.

“Treat them age-related, and have expectationsof their social and academic achievement,because I think we’re aiming too low”

Attitudes and practicesAll staff interviewed agreed that specialschools:

• had a family atmosphere;• combined the roles of teacher and parent,

resulting in some confusion for the child;• treated pupils as if they were less mature

and capable than mainstream peers;

• treated children closer to their academic than chronological age

• offered few opportunities for independence,self-responsibility and risk-taking;

• made fewer demands on parents;• had attitudes and practices which affected

outcomes, as they could be the deciding factor for senior school and post- 16 placement.

Reasons for this were given as:

• the lower social maturity of pupils on entry;• the lack of peer-group role models• the influence of “Nursery Nurses” practice;• calling staff by their first names;• staff being unaware of the children’s true

capabilities or potential;• over-protectiveness in social situations;• convenience - it is quicker to help than to

wait for children to help themselves;• the constraints of children with more severe

difficulties in the same group.

S Staff considered the family atmosphere abonus - a strong ethos of personal careappealed to parents. Unlike M staff, they didnot consider it might cause delay in socialmaturity and independence. They assumedthat social and academic levels were related.M teachers believed all children wished andhad the right to behave like their peers; staffwould facilitate this if a child wereexperiencing difficulties. Having peer groupsfor constant comparison raised the priority ofsocial development as an educational outcome.They saw the children’s social capabilities ingeneral as outstripping their academic ability.

Social relationshipsChildren in M school:

• had no role confusion; they saw staff as professionals, not family, and used titles;

• were cuddled if distressed, but “talking about the problem and helping sort it out” was usual.

On the S site:

• children were cuddled for reasons relating to social needs - “If they want it there mustbe a reason for it” and to “feel that someonereally cares about them”;

• some were seen as needing “to have a close relationship with a teacher”;

• children were touched all the time, although “part of the staff training should be about how we handle children... is it always necessary?”;

• staff: “We’re like an extended family.”

S staff had not considered that close personalrelationships could restrict social development;M staff were sensitive to establishing aprofessional relationship and valued their roleas teachers.

“Whose needs are you satisfying?”

“Would I like someone to do this to my ownchild... or even to me...Sometimes in specialschools, [they] do things to children that theywouldn’t like done to themselves or to theirown children.”

“Maybe they need [cuddles] in mainstreamand don’t get it because people have differentperceptions of what touching a child is.”

OutcomesTeachers who had given educational outcomesfull consideration were adamant of theimportance of social maturity in the followingareas:

• Choices of senior school or access to employment and FE. It has “quite a lot” of influence on choice of secondary school andability to cope.

• Children who transferred successfully to m were “socially mature although they may have been slightly less academically able.” “They can cope socially and ask for help at an academic level.”

• Socially mature young people were “more likely to find jobs” even if “academically behind”, “Over the years... it has always (been) a real worry for us.” “We’ve never got this right.”

Teachers also commented:

• Professional concerns invited them to treat children closer to their academic ability.

• Close physical care activities for older children maintains attitudes “we’ve normally left behind with infants. We still carry the idea of them as babies.”

• Different adult roles became blurred by extended care regimes, delaying secondary socialisation where distinctions between home and school fall into place.

• Children with SLD, included in mainstreamschools at whatever age, change their social behaviour. “There’s no other factor: They came on by leaps and bounds almost the minute they walked through the door of M.”

19Research summary: Social development

“They’ve got more choices.”

“If we haven’t encouraged them from theearliest opportunity to take responsibility... tolearn the hard way, then I don’t think we’vedone them any good service.”

About the projectThis study looked at Key Stage 2 children withSLD in two Oxfordshire schools with a long-standing integration link. Staff were invited tocomment on how a range of observedclassroom practices might contribute to thedevelopment of social maturity and affecteducation at Key Stages 3 and 4.

The sampleSix children were selected from a larger classgroup on each site. They were:

• all on the role of the special school;• supported by its staff;• matched for age, gender, ability, levels of

learning difficulties and sensory impairment.

MethodsStructured, timed observations took placeduring lessons and lunch and play periods.Field notes were collected to set the data incontext. Teachers, LSAs and headteachers oneach site were interviewed.

Further readingBarton, L., “The Politics of Special Educational Needs” in Disability, Handicap and Society, Vol 1 No 3, 1986.Blair, M., “Race, Class and Gender in School Research” in Debates and Issues in Feminist Research andPedagogy, Clevedon Intellectual Matters, 1995.Booth, Tony, “Labels and their Consequences” in Current Approaches to Down’s Syndrome, Cassell, 1987.Connolly, P., “Racism, Masculine Peer-Group Relations and the Schooling of African/Caribbean Infant Boys” inBritish Journal of Sociology of Education, Vol 16 No 1, 1995.Donnelan, C., “Disabilities and Discrimination” in Issues for the Nineties, Vol 17, Cambridge.Lea, S.J., “Mental Retardation, Social Construction or Clinical Reality?” in Disability, Handicap and Society,Vol 1 No 3, 1988.Morris, J., “Personal and Political: a Feminist Perspective on Researching Physical Disability” in Disability,Handicap and Society, Vol 7 No 2, 1992.Tomlinson, S., The Social Construct of the ESN(M) Child, Special Education.

The Author:Denise Dew-Hughes is a doctoral student at Oxford Brookes University, School of Education, Wheatley,Oxfordshire.

THE THYROID AND DOWN SYNDROME

Len Leshin

Normal FunctionThe thyroid gland sits at the base of the front of the neck and makes thyroid hormone fromiodide, thyroglobulin and tyrosine. This results in the production of thyroxine (T4), which is a“prohormone” (it’s inactive but just one step away from becoming a real hormone), and the actualthyroid hormone, T3. Both T3 and T4 are secreted by the thyroid into the blood stream. T4 isconverted to T3 by the thyroid, kidneys and liver. It is the T3 that’s so important for normalgrowth and development of infants and children, and normal metabolism of all ages.

So where does the Growth Hormone fit in? The GH, synthesized in the pituitary, appears to bethe mediator between the thyroid hormone and the individual tissues. You can also includesomatomedins, a group of proteins under the control of GH, as mediators between T3 and bodytissues.

Thyroid function is controlled by Thyroid Stimulating Hormone (TSH), a hormone made in thehypothalamus and pituitary. If the brain detects that T3 levels are low, more TSH is made whichtells the thyroid to make more T4 and T3. If levels are too high, the brain slows down makingTSH.

HypothyroidismThis is the state of not making enough thyroid hormone, and is the most common thyroidproblem associated with DS. This can be present at birth (congenital) or may occur at any age(acquired). Every state in the US and many other countries routinely screen all newborns forhypothyroidism. In newborns and infants with DS, the most common reason for hypothyroidismis that the thyroid did not form correctly in the foetus. In acquired hypothyroidism, the mostcommon reasons in toddlers and older children with DS is (1) autoimmunity (where the bodymakes antibodies against its own thyroid) and (2) thyroidits (where the thyroid tissue becomesreplaced with white blood cells and fibrous tissue).

The symptoms of low thyroid hormone are difficult to pick up, especially in infants. They includedecreased growth, decreased development, an enlarged tongue, decreased muscle tone, dry skinand constipation - all of which might be expected in an infant with DS. So, it is recommendedthat all infants with DS be checked at birth, 6 months of age, 1 year of age, and once a yearthereafter for thyroid function, regardless of their growth.

Screening for thyroid function in infants usually involves only a TSH level; if the TSH is elevated,then the T4 will be checked. In older infants and children, a T4 and TSH is recommended, andsome doctors include a measurement of T3 as well. Typically in hypothyroidism, the T4 will below and the TSH will be elevated (as the brain is trying to tell the thyroid to get going).

Treatment is the replacement of thyroid hormone with synthetic thyroxine. The dose is managedby watching sequential blood tests to see how the thyroid responds. Treatment is usually neededfor life. It should be noted that if the parents have become used to a calm, sedate child who ishypothyroid, the replacement will look as if the child has suddenly become hyperactive, when infact the child is returning to his or her natural (ahem) state.

HyperthyroidismWhile not as common as hypothyroidism, this does occur. The usual cause is, again, autoimmunedisease, but in this disease, the immune system cranks up the thyroid. (This is called GravesDisease.) Symptoms include rapid heart rate, nervousness, sweating, decreased attention span,flushed skin, always feeling hot and loss of hair. Often these children will have a noticeablyenlarged thyroid. Testing here includes TSH (low), T3 (elevated) and T4 (elevated).


21

Treatment is aimed at blocking the action of the thyroid hormone on body tissues. Antithyroiddrugs are often the first course of action. However, almost all of these drugs can cause significantside effects. Surgery is sometimes used to remove part of the thyroid, and then the child or adultis begun on thyroid replacement if needed. In adults, the most common treatment is destroyingthe thyroid by drinking radioactive iodide, and the patient then takes replacement thyroidhormone. However, radioactive iodide is not often used in children because of the risk of thyroidcarcinoma, especially in children with DS, where leukemia is more common.

Thyroid, DS and ControversyBefore the genetic reason of Down Syndrome was known, many people thought that DS wascaused by hypothyroidism. In 1896, 20 years after Langdon Down first described “mongoloids”(ugh), Telford Smith reported that giving thyroid therapy improved physical and mentalconditions of these children. For decades later, researchers argued whether all children with DShad hypothyroidism or not. With improved laboratory tests, the true picture of most childrenhaving normal thyroids emerged.

There have been many claims for giving all children with DS thyroid hormone replacement,regardless of their blood tests. Dr. Turkel included thyroid hormone in his “U” series, Harrell’spaper in 1981 on vitamin and mineral replacement included thyroid hormone therapy, and oneresearcher, Clemens Benda, advocated giving all children with DS a mixture of thyroid andpituitary gland. However, there is no known benefit from giving thyroid hormone to children withDS who have normal thyroid function, and it could be detrimental.

Some researchers have claimed that there is a “low-borderline” thyroid state, and the tests couldbe normal as the body is able to partially compensate. However, research shows that givingthyroid replacement to individuals with DS and low-normal thyroid tests had no cognitiveimprovement.

The Author:Len Leshin is a paediatrician in Corpus Christi, Texas, and father of Avi (a 4 year-old with Downsyndrome) and is a nember of the American Down Syndrome Medical Interest Group. His web site,“Down syndrome Health Issues” can be found at http://www.davlin.net/users/lleshin/ and containsa wealth of useful information on a range of health matters.

Dear Professor Buckley

I am writing with concern to the article written in your November magazine, namely “Our View onMega Vitamin Therapies”.

Since our son Alexander was born 15 months ago with Down’s Syndrome, we have come to greatlyadmire the work you have done and continue to do in helping children like mine obtain the most oftheir potential from an educational standpoint.

The most important things for any parent for their child is their health and happiness. With a childwith Down’s Syndrome, we have the added wish that they should be able to support themselveswhen we are no longer around for them. As a new mum, I can look relatively objectively to thework that has been going on in helping children like our own. I was quite surprised and extremelydisappointed to see the lack of work that has been going into researching our childrens’ health.Whenever it is asked “why is my child more prone to chest infections/heart problems/leukaemia etc”,it is because they have this extra chromosome. But when you ask why, nobody has any answers.

However, the research surrounding ‘TNI’ has at least gone some way into looking at the reasonswhy our children suffer more. It is proposed that Down’s Syndrome is not a static genetic disorder,but a progressive degenerative disease. Certainly evidence produced to date would concur with thathypothesis.

If your research had been done correctly you would have found that ‘TNI’ is not a megavitamintherapy and it was only developed in the 1990s. You have “sweepingly” referenced it in your article,you have not got into the theory behind it and therefore not provided both sides of the story. Youhave just mentioned Piracetam in passing, though it is not a vitamin, it is a drug. This is totally unclearin your article, and this could be quite misleading.

If you had listened to the evidence produced by Dr David Swenson at the ‘TNI’ conference held inLondon recently, you would have heard about the work that is going on in identifying the genes onchromosome 21. The theory put forward is that the extra genes are causing oxidative stress in thebody, so causing cell damage and ill-health. It has certainly been proved that our children aresubjected to more oxidative stress than average. This in turn is damaging cells in their body includingbrain cells which in turn, it is theorised, could be one of the reasons why our children are moreprone to Alzheimer’s Disease when they reach their mid-thirties.

‘TNI’ is not the megavitamin theory, though it is believed by giving our children antioxidants (includingvitamins) it can help relieve this oxidative stress and so lessen cell damage and improve their health ingeneral. It was developed in the early 1990s by a lady called Dixie Lawrence Tafoya after she adopteda child with Down’s Syndrome. Nutrichem used to work with her and now she has joined forces

NUTRITIONAL SUPPLEMENTATION -CORRESPONDENCE, CONTROVERSY AND

FURTHER COMMENTS

Editor’s note: Following the publication of “Our View on Mega Vitamin Therapies” (byBen Sacks and Sue Buckley) in this publication’s predecessor, DownsEd News, in

November 1997, a number of responses were received. Many were supportive of theviews expressed in the article, but a few were critical. At the request of the author, we are

publishing the most detailed critical response to the article and Professor Sacks andProfessor Buckley’s reply.

The next issue of Down Syndrome News and Update, will include a more detailed reviewof the subject than was permitted within DownsEd News, and a report from a recent

conference in London, at which Dr. Jack Warner and colleagues from the Warner Clinic inthe USA (which promotes another variant of nutritional supplementation called ‘HAP

CAPS’) presented talks. We hope to also publish a review paper by Dr. Len Leshin later inthe year (see the web references below if you have access to the Internet), and furtherreports on ongoing research into aspects of these controversial therapies as available.

23Nutritional Supplementation: Controversy & Comments

with a company producing Nutrivene. Neither company to my knowledge has pushed their productsat all in the UK to date.

A lot of the references you use in your article are very old, and much before the time of ‘TNI’ as itexists today.

Again, if you had attended the conference you would have heard from Dr Leichtmann, a paediatricianin the US who has done controlled studies on children/adults with DS taking the ‘TNI’ formula asagainst those just taking multivitamins. The results showed that those with ‘TNI’ had far less infections,and their development was several months ahead of those not in similar social circumstances. As anexperienced paediatrician specialising in DS, he is certain that ‘TNI’ has a positive effect. He iscurrently undertaking a double blind study but I certainly would not be prepared to submit Alexanderto it!

Like a growing number of other parents in the UK and over 6,000 in the US, I can testify that the‘TNI’ therapy has been successful for my son. Until I started Alexander on the ‘TNI’ therapy (withoutPiracetam), he was continuously ill, he had very blotchy bad skin, and his development was very slowindeed. Not a week went past without my getting a call from nursery to say he was ill yet again.

In August last year, we decided to try the therapy to see how he got on. We asked our GP andpaediatrician before we did so, and both were reluctant to prescribe Piracetam, so we used theformula without. We haven’t looked back since. His skin is clear, his health is much better (one day offnursery since September), and his general development has been on an upward trend.

I am sorry I cannot agree with your assertion that I was biased in favour especially as I was paying forit. I would quite welcome the excuse not to pay for it. It costs a lot of money, and I would rather nothave to pay. But my child’s health and development is more important and I have evidence for myselfthat it has benefited my son.

We are traditionally very conservative in the UK, and we will not try something until it has beenaround for years. I have not got time to waste on my son. I want to be sure I am doing everything Ican to lessen the cell damage in his body.

Nobody is saying “stop giving your child Portage/educational input, because ‘TNI’ will cure them”. Noparent would be silly enough to do so. But they can exist side by side. ‘TNI’ can improve their healthso that they are able to develop more from the greater educational opportunities they are given.There is no way giving ‘TNI’ lessens the importance of the work you have done and continue to do.

Nobody doubts at all your assertion that social, educational and family environment have significantdevelopment on intelligence. But also most important is that your child is healthy to be able to take alot of your teachings on board!

I had heard about a programme on television and contacted your Ben Sacks back in April to try andfind out about it. Without being asked, he gave me his opinion on vitamin therapies and told me theywere a waste of time. I lost several precious months as a result of conversations with both him andSarah of the DSA. Were you not representing my child in other ways, I would have been tempted tosue the Centre! It wasn’t until reading Chris Wills’ article in the DSA newsletter that I was able to findout more.

It is very sad that you have used your newsletter as a forum for a subject that you clearly know verylittle about. What you have done is very dangerous, as you could be depriving some children whoseparents were on the verge of giving them help, who take your word as gospel!I hope you can publish this letter in your newsletter to let some parents know that there is verypositive side to ‘TNI’. In the meantime, I implore you to refer on any parents who enquire about‘TNI’ to the Down’s Syndrome Research Foundation who specialise in researching the physical sideof Down’s Syndrome and seem to know an awful lot more about it!

Yours sincerely,Gillian Barrett

RESPONSE

16th February, 1998.

Dear Mrs Barrett,Thank-you for your letter regarding our articleon megavitamins, published in DownsEd Newsissue 1.4 and for your kind commentsregarding our educational work. Although yourletter was addressed to me, this reply has beenwritten by Professor Sacks and myself, as wasthe article you question.

We would like to respond to some of theparticular concerns that you express and do sounder topic headings.

Health and prevention of infectionWe would share your view that it is mostimportant to work to ensure that our childrenare healthy, happy and as independent aspossible in adult life and our work has beendedicated to this end.

You state that you were surprised anddisappointed to see the lack of research thathas been conducted into our children’s healthproblems. We would not agree with theaccuracy of this statement and would point outthat over the past twenty years, considerableclinical research by paediatricians has led tothe documentation of the increased risk ofcertain illnesses (and the reduced risk ofothers) resulting in Health Care Checklists (1)and many books of guidance for paediatricians,general practitioners and parents (2,3,4). Inaddition many geneticists and biochemists inlaboratories all over the world have been andstill are trying to understand the mechanismsthat may be altered by the presence of theextra genes on chromosome 21. Advances inthe methods available have been so great in thelast ten years that the possibility of being ableto solve some of the puzzles and find at leastsome effective and safe pharmacologicalinterventions in the next ten years is now veryreal.

Increased life expectancyThe efforts of the medical profession and thescientific community over the past 50 yearscan already be seen in the increase in healthand life expectancy for people with Downsyndrome. Before World War II, of thosepeople with Down syndrome who survivedinfancy, a majority would have died frominfectious disease during adolescence.Unfortunately antibiotics are not effective intreating viruses, for which no effectivetreatment has yet been identified. At presentthere is no known intervention that will

substantially effect the incidence of infectivediseases in people, including those with Downsyndrome, who are not otherwise ill or have anormal adequate mixed diet. Forty percent ofchildren with Down syndrome did not surviveinfancy because of congenital heart disease.Currently, this figure has been reduced bymore than half by developments in modernpaediatric surgery.

The average life expectancy of people withDown syndrome has increased from 12 yearsin 1947, when few lived to adult life and only6% lived to 30years (5). Now the estimates are44% will reach their 50’s and 14% their 60s(6). At the present time, the fact that in thedeveloped countries the majority of childrenborn with Down syndrome survive and arelikely to live beyond fifty years of age isentirely due to the progress in health careavailable to them.

‘TNI’Targeted nutritional intervention is not a newconcept and it is based on the mostly the sametheories as previous mega-vitamin therapies. Itis just a change of name and a variation ofsome of the contents. All the previous mega ormulti vitamin, mineral and amino acidsupplements from the time of Turkel onwardshave claimed to be specially formulated tomeet the particular needs of people withDown syndrome. This has been the reason fornot recommending the proprietary brandsavailable in the local pharmacy. We understandthat, by calling a product a ‘nutritionalintervention’ rather than a ‘therapy’ of anykind, the proponents in the USA avoid the riskof prosecution if it proves harmful.We are not aware of any published research onthe current ‘TNI’ formulas which substantiateany of the benefits claimed by theirproponents, let alone any that has beenpublished in a reputable, peer reviewedscientific journal. There are many doctors andscientists all over the world working on thepossibilities of treatments and regularlydiscussing our current state of knowledge. Asignificant number of them are also parents ofchildren with Down syndrome so they haveeven more reason to seek effective treatments.

We are aware of the hypotheses behind someof the recommended supplements. Some maybe on the right lines and lead to effectivetherapies some may not. The fact that weknow of a biochemical or metabolicabnormality at the cellular level does not meanwe yet understand the cause nor how to returnit to normal. If a cell seems to have a lowerthan normal level of a particular substance,


there is no reason to assume that simply takingmore of it in the diet will lead to a return tonormal levels in the cells. If a metabolicprocess is abnormal it may well go on beingabnormal regardless of the quantity ofchemical substances available to it. We discussbelow the kinds of issues raised in the Willsarticle and on ‘TNI’ sites on the Internet suchas that of Drs Leichtmann and Swenson. I amsorry to say that, in our opinion, theinformation on both these sites is not of astandard that would be accepted by most inthe scientific community. Both contain manyassertions of benefit for which they do not citeany evidence. It is accepted practice that if youmake a statement such as ‘this will increasegrowth’ you reference it to an article or articlescontaining research based evidence to supportthat statement.

Progressive degenerative diseaseWe feel that the suggestion that Downsyndrome is a ‘progressive degenerativedisease’ is misleading and designed to alarmparents unnecessarily and we cannot agree withyour statement that evidence supports this asan accurate model for the syndrome. Theaccepted use of this phrase is to describeconditions in which there is progressive loss offunction usually leading to premature death.

The majority of children with Down syndromeenjoy life and make steady progress in all areasof their development, from birth to adult life.A substantial proportion (not exactly known)now live into their fifties without clinicalevidence of Alzheimer disease or loss of skills.This suggests that, although documentedbiochemical abnormalities do occur in Downsyndrome, they do not cause a progressivedegenerative disease. Some of thesebiochemical abnormalities may turn out to bethe reasons why the rate of progress for mostareas of development is slower than is typical.However, we are not yet able to be preciseabout which of the described abnormalities inbiochemical function, if any, lead to particulardelays in development.

PiracetamWe are aware that Piracetam is a drug and thatpossibly its main action is to activateAMDA/kainate receptors in cells, changing thecalcium ion balance within the cell. The effectsof this action are widespread and not fullyunderstood but it is known that excessivestimulation of glutamate receptors may betoxic. It is important to point out thatPiracetam has not been approved in either theUK or USA for use with children with Downsyndrome. It is therefore not surprising that

your GP and paediatrician were not willing toprescribe it for Alexander.

Oxidative damageThe suggestion that people with Downsyndrome show evidence of lipoperoxidation isat least thirty years old. Unfortunately, despitecontinuous research efforts since that time, themechanisms for this are still not fullyunderstood. It is known that one of the 3 typesof SOD is over expressed in people withDown syndrome but there is no directevidence that this is responsible for any of thereported oxidative stress. Oxidative stress hasbeen and is the subject of a great deal ofresearch. It occurs in the cells of every humanand animal organism (7). It is known to beinfluenced by age and amount of daily calorieintake. Whether dietary use of ‘antioxidants’,such as vitamin C, selenium and othersubstances, has any effect on oxidative stressstill remains to be proved.

Alzheimer diseaseThe causation of Alzheimer disease is alsounknown. As recently as January 1998 twoarticles were published, one in Nature and onein Science (8,9), reporting completely newfindings about this puzzling condition. Atpresent it is likely that more research groupsare working on Alzheimer disease than on anyother disorder and many of them are includingpatients with Down syndrome in their studies.I should point out that the early claims thateveryone with Down syndrome will getAlzheimer disease were wrong.

Until recently it was assumed that the earlyoccurrence of beta amyloid plaques in thebrains of people with Down syndrome led tothe development of Alzheimer disease ineveryone with the syndrome. However, theresults of a number of studies over the lastdecade have consistently failed to detectdementia in the majority of adults with Downsyndrome over 30 years old, and there is noevidence of increased risk for decline inadaptive functioning before 50 years of age. Itis possible that not all plaques have the samesignificance. Some may be more benign thanothers. It is probable that the plaques seen inpeople with Down syndrome are notassociated with dementia in the way theyappear to be in other people (10). A survey inthe USA found that Alzheimer disease wasmore prevalent in older adults with other typesof learning disabilities than in those with Downsyndrome. These findings are reassuring andmake clear that the majority of adults withDown syndrome can expect to enjoy healthylives into their fifties and sixties (11).

London conference, October 1997With reference to the conference on ‘TNI’held in London recently, both I and ProfessorSacks would have attended in the hope ofhearing some new and scientifically acceptableevidence, but we had accepted an invitation tolead a residential conference for parents ofteenagers in Holland that weekend some sixmonths before we received an invitation to the‘TNI’ meeting. We would be very pleased toreceive copies of the papers presented or thevideo that I believe was made. We have alreadyasked the organisers for this information buthave not yet received it. We would be alsointerested to see the published results of anyof Dr Leichtmann’s current research.

Scientific v anecdotal evidenceI am happy to know that you are convincedthat Alexander is healthier on the formula.Unfortunately this is known as anecdotalevidence does not, by itself, help the debate.How are you measuring change? Can you besure that his development is going faster thanit would have without ‘TNI’? Do you knowthat he is doing better than he would on ahealthy balanced diet or with the addition ofordinary children’s dietary supplements? Evenif he is doing better, do you know which of theingredients may be having a positive effect?Any benefits may be due to only one or twosubstances. Can you be sure that othersubstances in the formula are not harmful inthe short, medium or long-term? These are allthe questions we need answers to before wecould support the use of such treatments.They can only be reliably answered bycontrolled double-blind studies of adequatenumbers of children, as we pointed out in ourarticle. If any of the ingredients do turn out tobe beneficial, and some may be proven to be soin the light of proper clinical trials, it is likelythat others may be useless but harmless andthat some may be harmful.

This is why every large national association forpeople with Down syndrome is not supportingthe use of ‘TNI’ at present and no ScientificCommittee at the national or internationallevel is recommending their use either. It’s notthat we are simply conservative in the UK, it isbecause the vast majority of doctors andscientists world-wide do not consider theevidence of either efficacy or safety to beavailable.

Unfortunately, the history of medicineprovides countless examples of treatments thatwere promoted as miracle cures and receivedtestimonials of efficacy from many that triedthem but turned out to be ineffective or toxicwhen subject to scientific evaluation.

Referring parents for expert adviceOn your last point, I am afraid that I could notrefer parents to the Down’s Syndome ResearchFoundation, without knowing more about theirscientific advisors in the UK. It is myunderstanding that it is run at present by wellmeaning parents who do not have enoughmedical or scientific knowledge to be able tounderstand or review the theories or theevidence, let alone suggest treatments.

Professional standards of practiceWe, personally, do not have any prejudices orhidden agendas. As responsible professionals, itis our duty to examine and evaluate theevidence available to support claims ofeffectiveness as objectively as possible in orderto provide the best possible advice. If we knowthat there is published evidence that a therapyworks and is safe, then we would recommendit. If we believe that there is the possibilitythat a newly devised treatment might workbecause it is based on a credible hypothesis,then we would encourage a proper evaluationstudy to test the treatment.

In our own work at The Sarah Duffen Centrewe have been doing exactly this with ourresearch programme for the past eighteenyears. At the start, many of our ideas wereconsidered to be wrong by a majority of ourcolleagues. We have designed studies to testour hypotheses and, by producing evidence tosupport them, have influenced change ineducational practice.

Until recently, the values and principles thatguide our practice at The Sarah Duffen Centrewere set out in our literature a copy of which Ienclose. They include the statement ‘allinterventions should be scientifically evaluatedand clear evidence of outcomes, advantagesand disadvantages provided to parents’.We hope that this letter is helpful in explainingmore fully our position and the reasons for it.We realise that these are complex issues and ifyou would like to discuss them further, whynot consider coming to The Sarah DuffenCentre where we would be pleased to meetwith you?

With kind regardsBen Sacks, Sue Buckley


References1. Cohen, W.I.(Ed) (1996) Health Care Guidelines for Individuals with Down Syndrome (Down SyndromePreventive Medical Check List) Down Syndrome Quarterly v 1 p 1-10.2. Rogers, P.T. & Coleman, M. (1992) Medical Care in Down Syndrome: a preventive medical approach.Marcell Dekker.3. Lott, I.T.& McCoy, E.E. (1992) Down Syndrome: Advances in Medical Care. Wiley-Liss.4. Van Dyke, D.C.,Mattheis, P., Eberly, S.S. & Williams, J. (1995) Medical and Surgical Care for Childrenwith Down Syndrome: a guide for parents. Woodbine House.5. Penrose,L.S. (1949) The incidence of mongolism in the general population. Journal of Mental Science, v95,p 685-688.6. Baird, P.A. & Sadovnick (1988) Life expectancy in Down syndrome adults. Lancet, ii, 1354-1356.7. Sohal, R.S, Weindruch,R.(1996) Oxidative stress, caloric restriction and ageing. Science v.273 p.59-63.8. Van Leeuwen et al. (1998) Frameshift mutants of beta amyloid precursor protein and ubiquitin-B inAlzheimer and Down patients. Science v 279 p 242-247.9. De Strooper, B. et al. (1998) Deficiency of presenilin-1 inhibits the normal cleavage of amyloid precursorprotein. Nature v 391 p 387-390.10. Wisniewski, H.M. (1997) Down syndrome and Alzheimer disease. Paper presented at 6th World Congresson Down Syndrome. Madrid, Spain.11. Janicki, M.P. & Dalton, A.J. (1997) Planning for the occurrence of dementia among adults with Downsyndrome. Paper presented at 6th World Congress on Down Syndrome. Madrid, Spain.

Recommended web references:Cohen, W. (Ed) (1996) Health Care Guidelines for Individuals with Down Syndrome. Down SyndromeQuarterly. 1(2) [Online] Available at: http://www.denison.edu/dsq/health96.html [Accessed: June 9, 1998](Editor’s note: these were prepared by the Down Syndrome Medical Interest Group in North America.Similar guidelines are available in some other countries and may differ slightly on certain recommendations).Coleman, M. (1997) Vitamins and Down Syndrome. Down Syndrome Quarterly. 2(2) [Online] Available at:http://www.denison.edu/dsq/vitamin.html [Accessed: June 9, 1998]Kehler, M. (1996) On Targeted Nutritional Intervention: Research and Commentary. What’s up with Downs?Available at: http://www2.pcix.com/~kehler/What’sUp/TNI/ [Accessed: June 9, 1998]Leshin, L (1998) Nutritional Intervention - A Highly Questionable Approach. Quackwatch [Online]Available at: http://www.quackwatch.com/01QuackeryRelatedTopics/down.html [Accessed: June 9, 1998]Leshin, L. (1997) Amino Acid Profiles in Children with Down Syndrome. Down Syndrome Health Issues.[Online] Available at: http://www.davlin.net/users/lleshin/amino.htm [Accessed: June 9, 1998]Leshin, L. (1998) Minerals/Vitamins and Down Syndrome. Down Syndrome Health Issues. [Online] Availableat: http://www.davlin.net/users/lleshin/vitamin.htm [Accessed: June 9, 1998]Leshin, L. (1998) Piracetam Research. Down Syndrome Health Issues. [Online] Available at:http://www.davlin.net/users/lleshin/piracet.htm [Accessed: June 9, 1998]Sacks, B. and Buckley, S. (1997) Our view on ‘mega-vitamin’ therapies. DownsEd News 1(4) [Online]Available at: http://www.downsnet.org/library/news_update/our_view_vitamins/ [Accessed: June 9, 1998]

The Authors:Professor Ben Sacks is Consultant Developmental Psychiatrist and Medical Advisor at The Down SyndromeEducational Trust with more than 40 years clinical experience. He has recently retired from the Chair inDevelopmental Psychiatry at Charing Cross and Westminster Medical School, University of London, UK.

Sue Buckley is Professor of Developmental Disability at the Department of Psychology at the University ofPortsmouth, UK. She is also Director of The Centre for Disability Studies at The University of Portsmouth andDirector of Research and Information Services and at The Down Syndrome Educational Trust. She also serves asa Non-Executive Director of the Portsmouth and South East Hampshire District Health Authority and on theboards of the European Down Syndrome Association and the International Down Syndrome Federation.

REVIEW: INFORMATION PACK ABOUT HEARTPROBLEMS FROM THE DOWN’S HEART GROUP

Ben Sacks

The incidence of congenital cardiac disorders in people with Down syndrome is rather high andthe fraction of those that are amenable to cardiac surgery and other forms of treatment is nowvery much higher than it used to be. The relatively recent changes in attitude towards providingthese treatments has resulted in increasing numbers of children with Down syndrome undergoingcardiac surgery.

The Down’s Heart Group is an organisation which was established to help the parents of childrenwith Down syndrome and a heart condition. Their aim is to supply information about the heartconditions found in people with Down syndrome in a straightforward and easily understood form.

The Group has published an Information Pack containing fifteen A5 sized cards each covering aseparate topic and a video tape. The cards describe virtually all of the cardiovascular conditionswhich occur in people with Down syndrome as well as topics such as The Heart Team, MedicalTerminology, drugs used in cardiology and cardiac catheterisation.

The topics are covered in a straightforward, factual and easily understood style while maintaininga supportive tone. Concerned parents will be able to find information about almost all the generalquestions they are likely to ask in this pack. The companion videotape graphically illustrates someof the same topics as well as demonstrating some of the concerns that parents expressed duringgroup discussions. These materials are highly recommended.

Review by Professor Ben Sacks, Consultant Developmental Psychiatrist and Medical Advisor toThe Down Syndrome Educational Trust.

The Information Pack is available from the Down’s Heart Group, National Office,17 Cantilupe Close, Eaton Bray, Dunstable, Bedfordshire, LU6 2EA.

29Bilingual Children

BILINGUAL CHILDREN WITH DOWNS SYNDROME

A letterOur seven year old boy with DS is in primary one of our local school and is being educated through a secondlanguage - Gaelic. Our home language is English. I would be interested to hear about anyone with DS that isin a similar situation (i.e. being educated in a language other than that of the home) for a university dissertationthat I am preparing on this subject as well as for our own benefit.

Many thanksJohn Charity.

CommentsThis letter requesting information on children with Down syndrome learning a second languagehas prompted me to summarise my experience and the advice that I give in the following notes. Iwould also welcome any information that readers have either by post or to the Speech andLanguage ‘bulletin board’ (newsgroup) atnews://news.downsnet.org/downsnet.public.topics.speech-language

I am frequently asked for my advice on bilingualism by parents and professionals and I give thefollowing response:

1. There is no research literature or systematic study of bilingualism in people with Down syndrome to inform decisions on this issue to my knowledge.

2. In my frequent travels around the world over the past fifteen years, I have met a significant number of children and adults with Down syndrome who are competently bilingual. Some are able to speak three languages and many are able to read, write and speak to a functionally useful level in two languages. The levels of achievement vary between individuals, but my experience is sufficient to enable me to reject the view that a bilingual situation at home or at school is necessarily going to be too difficult for a child with Down syndrome.

3. The bilingual children and adults with Down syndrome that I have met have had a variety of experiences. a) Some have been in bilingual homes and exposed to two languages from birth. They have

learned the two languages at the same time, though usually have more productive vocabulary in the one most frequently used in the family, while showing good comprehension of the other. Where signing is being used with speech, the sign seem to help the child to learn the word for something in both languages - it acts as a ‘bridge’.

b) Some have learned a second language outside the home as a result of going to school in a community that uses a different language from the child’s first language. The first bilingual children that I met had both had this experience. One young lady whose first language was English, from an English speaking family, had learned Welsh in the village school from five years of age. When I met her at ten years old, she could read and write equally well, at a functional level, in English and in Welsh. Her parents informed me that she was going to pursue her secondary schooling in the Welsh language school as that was where her friends were going. The second bilingual child with Down syndrome that I met had moved to France with her family at ten years of age, from the UK. She had learned French at this point, taught by her mother, and had continued her education in French, able to read and write in French as a teenager. I recently met a young Japanese woman with Down syndromein her early twenties who could read and speak English, although neither of her parents could do so to the same level of competence. I also know twins with Down syndrome whose parents are both profoundly deaf. These girls are bilingual in British Sign Language and in English. They can switch from one to the other when they are in the company of both deaf and hearing people at the same time. The progress of these twins has been documented and they have found grammar difficult in both languages. Grammar, of course, is well known to be more difficult for children with Down syndrome to master than vocabulary.

AdviceOn the basis of my experience, I advise any bilingual family to treat a baby with Down syndromelike any other child in their family i.e to expose them to both languages naturally, for thefollowing reasons.

• I think that it is important that family life continues as normally as possible for all family members and is distorted as little as possible by the arrival of a baby with Down syndrome, for the well-being of everyone in the longterm.

• If there other children then parents will want them to have the advantage of being bi-lingual.

• The extended family are likely to speak different languages and the child with Down syndromewill be part of a bilingual world so it is not possible or desirable to suggest he or she is only brought up in one language.

• It is rather cruel in my view to tell a parent or grandparent that they cannot communicate witha baby in their first language.

However, I suggest that specific language teaching activities, including reading activities, focus onteaching the child the language that he or she will use in school.

I also emphasise the importance of a good language learning environment e.g one in which thebaby is talked to as much as possible, in a child centred way i.e is talked to about what he or sheis doing or interested in, by all family members as they spend time with the child.

Caution - I see young children who are doing well in bilingual situations, developing competencein both languages and doing as well in their first language as most children with Down syndrome.I also sometimes see children who have very little first or second language if they are not beingtalked to at home, and this can be a particular risk if the child is cared for by a nanny who speakslittle of the family’s first language. What matters is the quality and quantity of the languageexperience of the child.

As I have made clear, these are personal views based on my practical experience. I wouldwelcome comment and experiences from others.

Sue Buckley

31Getting started on the Internet

IntroductionFew people can not have heard about theInternet. The amount of news and hypesurrounding the “Information Super-Highway”has grown dramatically over the past couple ofyears. Millions of people now use the Internetdaily for communication, information andentertainment, and use is growingexponentially. It is estimated that around 55million people currently have access to theinternet and that this will increase to around550 million over the next three years(Source: International Data Corporation/TheEconomist)

This article is the first of a two part series onthe Internet. This instalment aims to explain alittle about the Internet, and the practicalitiesof getting connected. The sequel will focuswhat do with the Internet once connected,how to find the information that you arelooking for, and will offer a number of pointersto sites with interesting information aboutDown syndrome, health, disabilities in general,research and more.

About the internet

What is the Internet?Essentially, the Internet is a large network. Inprinciple, it is similar to any local area network(LAN), as might be found in many offices oracademic departments, where computers arelinked together in order to be able to sharedata. The key difference is scale - the Internetincludes thousands of smaller networks thatare inter-connected via telecommunicationssystems.

The Internet began around 20 years ago asARPAnet (a U.S. Defence Departmentresearch network) and other radio and satellitenetworks. Since then, it has developed toinclude numerous networks around the world.These include the National Science FoundationNetwork (NSFNET), the Australian Academicand Research Network (AARNet), the NASAScience Internet (NSI), the Swiss Academic

and Research Network (SWITCH), and about10,000 other commercial and researchnetworks.

The Internet currently extends to over 50countries and continues to expand rapidly.Eastern European countries are rapidlybecoming connected and many developingcountries are investing in connections as ameans to improving education. Western Europeis comparatively well connected, and accountsfor around 25% of all hosts connected to theInternet. (1)

What is the World-wide Web?Defining the “World-wide Web” is not an easytask. In a sense, it is no more than a hugecollection of documents stored on computersaround the world in a standard format thatmakes them easily accessible to any computerwith the necessary software to read them.What draws these documents together into a“web” is the method of navigating themthrough “hyperlinks”. “Hyperlinks” are a lotlike references in a book or journal article,except that instead of having to visit a libraryto find the referenced document, they takeyou straight to it (Figure 1). “Hyperlinks”,together with text, graphics, video and sound,make up “Hypertext”, the format of the“web”:

“Hypertext” is text with links. Hypertext is not a new idea: in fact, when you read a book there are links between references, footnotes, and between the table of contents or index and the text. If you include bibliographies which refer to other books and papers, text is in fact already full of references. With hypertext, the computer makes following such references as easy as turning the page. This means that the reader can escape from the sequential organisation of the pages to pursue a thread of his or her own. This makes hypertext an incredibly powerful tool for learning. Hypertext authors design their material to make it open


GETTING STARTED ON THE INTERNET

Angela Byrne and Frank Buckley

to active exploration and in doing so communicate their information and ideas more effectively.” (Berners-Lee, 1991-2)

The World Wide Web was invented in late1990 by Tim Berners-Lee. Tim Berners-Lee, agraduate of Oxford University, was aconsultant in hardware and software systemdesign, real-time communications graphics andtext processing, and a principal engineer withPlessey Telecommunications in Poole. In 1989,he commenced consulting for CERN, theEuropean Particle Physics Laboratory inGeneva, Switzerland. The Web was originallydeveloped for CERN to allow informationsharing among teams of scientists who werespread around the globe. During 1990, TimBerners-Lee wrote the first WWW client alongwith most of the communications software.

Since then, software companies have assumedthe role of browser software development. Thecontinuing development of the standards thatbind the web together has been assumed by anorganisation called W3C that was founded in

1994. W3C is an international consortium,jointly hosted by the Massachusetts Instituteof Technology Laboratory for ComputerScience [MIT/LCS] in the United States; the

Institut National de Recherche enInformatique et en Automatique[INRIA] in Europe; and the KeioUniversity Shonan FujisawaCampus in Asia. Initially, theW3C was established incollaboration with CERN withsupport from DARPA and theEuropean Commission.

What other facilities areavailable on the Internet?Other facilities on the Internet,besides the World Wide Web,include electronic mail (e-mail),and newsgroups.(2) Electronicmail allows you to send messages,documents, pictures and evenvideo and audio clips to anyonewho also has access to theInternet. Messages and documentscan be delivered to the other sideof the world in a matter ofminutes, for simply the costs ofbeing connected. A considerableamount of The Down SyndromeEducational Trust’scorrespondence is now conductedby e-mail, saving paper, fax,telephone and postage costs.

Newsgroups are public discussionforums, where anyone can post orread messages. Newsgroups tendto be divided by subject or

interest. There are currently around 30,000newsgroups with an estimated 20,000,000readers at 80,000 sites world-wide.

Getting connectedA detailed discussion of computer hardwareand software is outside the scope of thisarticle, and what follows is only a summary ofthe key factors relating to Internet access. Ifyou are considering purchasing a computer forhome use, other factors will be importantbeyond simply Internet access.

If you would like further information, pleasefeel free to contact us, or contact your localcomputer dealer. Some contact information isavailable at the end of this article.

Figure 1. Hyperlinks are usually identified as underlined words. Clickingon the underlined article on the illustrated page would result in the articlebeing displayed.

33Getting started on the Internet

What is required for access?Any computer that can run a “browser”application, access to a telephone line, amodem and an Internet Service Provider arerequired. Any mainstream “IBM-compatible”personal computer with a “486”, “Pentium”,“Pentium Pro” or “Pentium II” processor (orcompatible) will be capable of running thesoftware necessary for Internet access. Also,Apple Macintosh PC’s and Acorn (32-bit)computers can access the Internet.

Any ordinary telephone line is adequate forconnecting to the Internet. It need not be adedicated line. Other options include ISDNlines, though these are relatively expensive toinstall and only worth it if you intend to spenda lot of time on-line. Generally, if the modemis fast, then you spend less time on-line(keeping telephone bills lower) and gain asmoother browsing experience. However,modems claiming speeds of above 33.6 kilobitsper second are dependent on Internet ServiceProviders with special equipment, and rely ondata compression techniques that will notalways achieve these rates.

What is required for browsing theweb?In order to read Web pages, a browser isrequired. There are a number of browsersavailable, but for most personal computers thetwo most popular are Microsoft’s “InternetExplorer” and Netscape’s “Navigator”. Bothare available in various versions for Windows95, Windows NT 4.0, Windows 3.1, WindowsNT 3.51, Mac OS and UNIX. If you aresigning up with an Internet Service Provider,you will usually be provided with a browserand software for email, newsgroups, and otherfunctions. The latest browsers are usuallydistributed on the free CD’s with mostcomputer magazines and are available fordownload on the Internet. (3)

What is required for other Internetservices?Access to email and newsgroups requiresadditional software. Again, this will usually beprovided by an Internet Service Provider. BothMicrosoft Internet Explorer and NetscapeNavigator also come with packages for emailand newsgroups.

In the next partIn the next issue of Down Syndrome Newsand Update we will present a review of anumber of information resources about Downsyndrome and related subjects.

Notes1. For a more detailed history of the Internet see

Krol E, Hoffman E (May 1993), “For Your Information (FYI) on “What is the Internet?”, http://rs.internic.net/nic-support/fyi/fyi20.html

2. There are more, such as FTP site, Gopher, Telnet, but since these are the most commonly used, and space is limited, further discussion would not be appropriate for this article.

3. Given the size of the latest browser packages, buying a computer magazine will usually be the quickest (and probably the cheapest) way of getting hold of them. If you wish to download from the Internet, the two main browsers are available from http://www.microsft.com/ie/ and http://www.netscape.com/

ReferencesBerners-Lee, T. (1991-2). World Wide Web Seminar.[Online] Available:http://www.w3.org/Talks/General.html [Accessed:1998, May 13]

The authors: Dr. Angela Byrne is a Psychologist atThe Down Syndrome Educational Trust, andAssistant Editor of the journal “Down SyndromeResearch and Practice”.Frank Buckley is Operations and Finance Director atThe Down Syndrome Educational Trust, and isresponsible for the Trust’s information technologysystems.

REVIEW: COMPUTER SOFTWARE TO ASSIST WITHDEVELOPING NUMERACY SKILLS

Bob Black

A frequent concern that I hear expressed by parents using computers regularly with their childrenis the lack of good programs to help with gaining number skills. This is partly due to the child’sdifficulty with getting to grips with numbers and partly because there are very few simpleprograms to help with each stage of the learning process. Part of the problem is identifying wherethe child is at and therefore what to be practising or developing at any given time.

In order to deal with numbers a child needs two things, the skills to use the numbers and theopportunity and motivation to use the skills that they do gain. Early on the best exercises couldwell be those that deal with ‘spatial awareness’ rather than specifically with numbers and later itcould be just as important to work on sequencing and categorising objects as well as developingmemory skills to help with having ‘a place to put the numbers’ before actually tackling numbers atall. Good examples of these programmes are Blob 1, Blob 2, Make It Happen and Count with Blobfrom Widget Software. Touche from Le Computer and The Switch On and Touch Games 1 & 2series from Brilliant computing. Worth a mention also are People Matching, Amazing One BearBand and Amazing Animals from Hornmead Software, the latter being an excellent colour andnumber programme even if it does look a bit dated.

In my experience the best computer programmes for dealing with all these pre number skillscome from software by Brilliant Computing and Widget Software. As for the second need,opportunity and motivation, life should provide these if only in terms of counting, playing shops,counting items and using money in the real world, to get things they like. A child will need plentyof opportunity to make mistakes.

Two programmes that have proved particularly useful recently for some children are Number Picsand Talking animated numbers.Both are designed for schools but equally useful at home. NumberPics offers practice with counting objects and recognising the number. At its easiest level it offerserror free learning by speaking the number as the objects appear, leaving the child who hasdifficulty with counting objects the verbal clue as well as the visual clue, as below it would say theword 4 as the picture opens. The child would then select the number from the choices at thebottom and if correct the number would be spoken again and then appear on the window next tothe objects. You can choose whether to work on numbers from 1-5, 0-9 or 1-10. As the childgains confidence the sound can be switched off leaving them no choice but to physically count theobjects to know the correct number to select. Alternatively the child can be presented with amultiple choice option where the number is written in the centre and there are 4 pictures tochooses from, only one of which contains the correct number of objects. As with the first exerciseyou can choose whether to give the verbal clue or not.

A great programme with numbers from one to ten is Animated Numbers from Sherston software,which really makes the numbers come alive with super pictures and animations and has someexercises looking at simple number concepts which are entertaining and exciting for people to use.

For more advanced number work, like introducing adding and subtracting, there are quite a fewgamey programmes designed for young children that can have valuable contents, many of themhowever do not simplify activities enough and assume a more complex knowledge of numbersthan children may have. Many like the Funschool series may only have a small number of activitiesthat prove to be of much value. Funschool 4, has good exercise’s in finding a missing number,requiring the child to count from 1 in order to identify the missing number. For serious numberwork the slightly less lively educational programmes will prove much more valuable if time can bespent working with a child.Number tiles is a plain programme that allows a child to practice adding and subtracting usingeither real numbers or by counting objects or domino style tiles. It may take a while to work outhow to change from one type of display to another and to alter the level of difficulty, but once theteacher or parent has mastered it it becomes a good teaching resource with a fair variation ofpresentations for the child to work from counting objects towards doing sums with real numbers.

35

Once working with real numbers, children of all abilities need to spend a lot of time practisingsums, a dull activity at the best of times and even more so for children who find it difficult.Maths Book offers children an on screen variation that doesn’t require so much hand written workand helps to offer a way to learn how to do sums as they practice, pointing out many of thecommon errors as they occur. The sums are presented in a very formal text book format that willbe familiar to children doing sums at school but it offers help with all the common mistakes andhelps to remind children of the rules of carrying tens and so on. It also speaks it’s help to assistthose with poor literacy. The added bonus is that it will allow you to print out worksheets at thechild’s own level and these will automatically include any sums that were done wrong on screen,offering paper and pencil exercises away from the computer.

The level of help that is given can be altered in line with the child’s confidence and ability. Thedifficulty of the sums can be altered from adding two figure numbers to each other to usinghundreds, tens, units and two places of decimals, offering even monetary style sums to work on.The upper levels are beyond the scope of most of the children that I have worked with, but theintroductory levels are fine.

Of course, numeric practice often requires some literacy and speech skills which is why there aresome simple error free sections in Speaking for Myself. These allow a child to just practicelearning the written, spoken and visual clues to the numbers from 1 to 12 as described below.

Speaking for Myself also has a wide range of literacy and language development sections: firstwords for visual sight vocabulary, simple talking books which practice putting two and three wordstogether, and a series of exercises which help with speech and language/ communicationdevelopment, spatial awareness, listening skills and placement. This has been developed inassociation with The Down Syndrome Educational Trust and the Down’s Syndrome Association asit has long been apparent that the range of new CD-ROM, multb imedia computer programmesfor early years and specifically relevant to children with Down syndrome, has been very limited.

The author: Bob Black is the Down’s Syndrome Association’s Development Officer for the SouthWest and author of “Speaking for Myself ”, a multimedia software package that offers a range ofactivities designed to assist early language and reading development in children with learningdifficulties.

REVIEW: SOFTWARE TO START WITH

Bob Black

At The Wessex Computer Workshop at The Sarah Duffen Centre in October there was a greatdeal of interest in computer programmes that did not require the child to use the mouse on thecomputer. The co-ordination required to use the mouse with the hand to move the object on thescreen is complex, just watch any adult without difficulties doing it for the first time. As well asthe hand to eye co-ordination that is required there are those buttons which have to be pressed atthe appropriate time as well, and depending on the type of computer you have there can be 1, 2,or 3 buttons all performing different tasks. So as an introduction to using the computer it is wellworth finding programmes that do not require mouse control.

There are plenty of companies out there who will sell you a variety of alternatives, touch screen,concept keyboards, roller balls and the like but while using an alternative of these kinds may berelevant in a school situation to carry out particular tasks for short periods, most parents want towork towards enabling their children to use the same tools as everyone else. These alternativescan actually create a barrier, not only limiting the amount of software that children can use butmaking it unnecessary to learn the skills that will be of most value to them later on.I shall describe a couple of programmes that use just one or two keys on the keyboard (mainly thespace bar, which is the nearest and biggest, and the return key, which is next biggest) and then goon to list a few others that have been popular with children in my area.

Probably the longest serving and most used programme in the history of early years computing isBlob and although this programme is long in the tooth its relevance is still as good today as it was

Review: Software to start with

when it was originally written for the old BBC computers. It is now available for the moremodern computer and offers a wide range of exercises and a wide range of options for how to runit. If you choose “keyboard” from the list of options and then choose “spacebar” a whole range ofsimple exercises can be carried out just by pressing the spacebar.

Another long-standing favourite is Facepaints. This simple little programme is extremely versatileand offers choices from simply pressing the spacebar, through using the mouse and on to having totype in simple choices using the standard keyboard, so the range of ages and abilities is extremelywide. It allows the child the opportunity to create faces from a large combination of features, sex,colour, shape, eyes, noses, ears, hair and even glasses, moustaches and a choice of hats. There havebeen times, when demonstrating software to children that this particular programme has had tobe removed from the choices because children have just wanted to keep on playing with all thecombinations that can be achieved.

And it doesn’t stop there, when the picture is complete it can be given a name, printed out oreven made to speak by using a microphone connected to your computer. This software not onlyoffers choices of how to use it but gives children an opportunity to develop computer skills, skillsin making choices, observation skills and speech practice as well as offering the chance to keep aprinted record of their work and have a lot of fun into the bargain.

The author: Bob Black is the Down’s Syndrome Association’s Development Officer for the SouthWest and author of “Speaking for Myself ”, a multimedia software package that offers a range ofactivities designed to assist early language and reading development in children with learningdifficulties.

Software contactsThe Down Syndrome Educational Trust has recently begun stocking recommended educationalsoftware through its subsidiary, DownsEd Limited. A selected range is held in stock (normallysupplied within 2 working days) and other titles from Semerc, Topologika, Sherston and Widgitcan be supplied to order (normally within 4 working days). For further information, call +44(01705) 824261 or e-mail [email protected]

To contact suppliers direct:Brilliant Computing; Hornmead software: available from Semerc. 1 Broadbent Rd,Watersheddings, Oldham OL1 4LB +44 (0161) 627 4469

Widgit software available from Widgit. 102 Radford Rd., Leamington Spa, Warwickshire,CV31 1LF

Topologica software (Number Pics, Number tiles and Maths book) Waterside House, FalmouthRd, PENRYN, Cornwall TR10 8BE Tel +44 (01326) 377771 Fax +44 (01326) 376755 [email protected]

Animated numbers is from Sherston software Angel House, Sherston, Malmsbury, Wiltshire,SN16 0LH +44 (01666) 840433

Web references:Educational software suppliersSherston - http://www.sherston.com/Topologika - http://www.topolgka.demon.co.uk/Widgit - http://www.widgit.com/Inclusive Technology - http://www.inclusive.co.uk/

37Conference report: Florida 1997

The National Down Syndrome Society held its11th International Down Syndrome ResearchConference on Cognition and Behaviour inFlorida in November 1997. I was invited toparticipate in the 3 day meeting, giving me theopportunity to share this summary withreaders. I have attempted to review the mainpoints from most of the papers. Many of thepresenters have published some or all of theirwork, so if any reader would like moreinformation on any topic please contact meand I will provide references or put them intouch with authors. I have grouped the papersinto topic areas, starting with infancy andmoving to adult issues, with medical/geneticresearch at the end.

InfancyThe first presentation by Dr Rathe Karrer andDr Jennifer Hill Karrer of the Smith MentalRetardation Centre, University of Kansasoutlined their research on attention andcognition in infants. They explained how theyare using measures of the electrical activity ofthe brain called event-related potentials (ERPs)to study cognitive development in infants.ERPs are measured by electrodes placed on thebaby’s scalp. It is a harmless and non-invasivetechnique that can be used to measure brainresponses to stimuli presented to the baby.They are looking at responses to visual stimulisuch as attention, response to novelty andrecognition memory in infants with andwithout Down syndrome. They are engaged inlongitudinal studies and may be able to relatethe ERP data to different rates of progress inthe children.

ERP measures are being widely used in othercentres in the UK and USA to study braindevelopment in infants and children withDown syndrome and to chart the effects ofdifferent rates of functional development onspecialisation in the brain. It is even arguedthat the technique can be used to evaluate the

effects of different types of intervention orinput on the development of the brain.

Speech and languageThe next presentation by Dr Carolyn Mervis ofthe Department of Psychology, University ofLouisville, Kentucky, reviewed her research onvocabulary acquisition and on children’s abilityto master category concepts. She pointed outthat the ability to form concepts and tocategorise is critical to a child’s ability tounderstand and to organise their experience ofthe world. She has collected detailedlongitudinal data on five children with Downsyndrome and they showed two rates ofprogress with two children progressing liketypical children and three progressing moreslowly, highlighting the variability to beexpected in their development.

A second paper on language development waspresented on the second day by Dr. LibbyKumin, Department of Speech/LanguagePathology. Loyola College, Maryland. She hascollected data on 115 children from two tofive years by asking their parents to completethe McArthur Communicative DevelopmentInventory. This asks parents to identify thewords and sentences that their child is usingfrom a checklist. Mean vocabularies grew from55 words at age two by approximately 100words per year to 391 words at five years.However, variability at each age was very large(from 8 to 226 words for different children attwo to 62 to 611 at five years). She alsoreported on the emergence of earlygrammatical markers such as plurals,possessives and past tenses. These also showedwide variation in the age they were achievedby different children.Both the papers on language illustrated thevery different rates of language developmentseen in different children with Downsyndrome. Research which identifies thereasons for these different rates of progress is


THE NATIONAL DOWN SYNDROME SOCIETY’S 11THINTERNATIONAL DOWN SYNDROME RESEARCH

CONFERENCE ON COGNITION AND BEHAVIOUR

(Florida, November 1997)

Sue Buckley

needed if we are to become more effectivewith individually targeted interventionsmatched to children’s specific needs.

Early communication and later socialskillsDr Marion Sigman, from the School ofMedicine, University of California LosAngeles, reported the findings of a longitudinalstudy of 70 children with Down syndromefollowed from pre-school to middle schoolyears. In the pre-school years, the children’sability to initiate interactions and to share injoint attention situations (e.g. to attend tosame object or activity with a communicationpartner) correlated highly with verbal languagedevelopment. Followed up eight to ten yearslater, those with better interactive skills asinfants were better socially integrated in theschool playground. Dr Sigman thereforeemphasized the importance of following thebaby’s lead and talking about what he or she islooking at to encourage these joint interactionskills. She also observed that schools do notuse playtimes as positively as they could toteach and foster social interactions betweenchildren.

Reading and languageThere were two papers on reading and speechand language development. In the first, DrAnne Fowler of the Haskins Laboratories, NewHaven, Connecticut reviewed the research onlanguage development, considering variationand progress in the four different aspects oflanguage skill. These are 1) phonology - howwords are pronounced, 2) grammar, syntax andmorphology- how sentences are constructed, 3)lexical knowledge or vocabulary- the namesand meanings of words 4) pragmatics - therules governing the way that conversations areconducted. Dr Fowler pointed out that notonly is there wide variation in overall languageskill between children and adults with Downsyndrome, but there is also variation in thelevels of difficulty experienced within the fouraspects of language for individuals. She alsopointed out that current research findingsneeded to be interpreted with caution as wehave only just begun to tap the full potential ofpersons with Down syndrome. With thesecaveats in mind, she reported that typically,children with Down syndrome have moredifficulty with grammar and phonology thanwith vocabulary and pragmatics. She arguedthat phonological memory (auditory short-termmemory - often measured by digit span tasks)is a core problem affecting language learning.For example in one study of young adults,

correct use of verbal auxiliaries (e.g. is and arein he is running, they are running) waspredicted by digit span, those with better digitspans having more correct use of grammar. Shealso pointed out that some individuals achievegood language and some good literacy skillsalso, the good readers also having better digitspans than most people with Down syndrome.

My paper on stimulating reading and languagethrough the school years addressed some ofthe issues raised by Dr Fowler. Drawing ontwo longitudinal data sets collected withcolleagues here at The Sarah Duffen Centreand in the Department of Psychology,University of Portsmouth, I argued that thebetter digit spans and better speech andlanguage skills of readers may be theconsequence of learning to read rather thancausal factors. Studies of typically developingchildren would support the view that this maybe the case and that progress in either shortmemory, or speech and language or readingskill will have a beneficial effect for the othertwo skills - this is referred to as reciprocalcausation or ‘bootstrapping’. I also illustratedthe range of reading, spelling andcomprehension progress being made bychildren in our ongoing longitudinal study andthe rate at which they are becoming alphabeticreaders (e.g able to use phonic knowledge to‘sound out’ an unfamiliar word). It appearsthat they move from relying on logographic(relying on visual memory of whole words) toalphabetic strategies once they reach thereading levels of a typical seven year old on ourtests. This is very encouraging especially as thechildren with Down syndrome are likely tohave less good sound production and sounddiscrimination abilities to support the learningof phonics.

Short-term memoryOne of the factors thought to be causallylinked to some of the language learningdifficulties is poor auditory (or verbal) short-term memory development in children withDown syndrome. Dr Chris Jarrold, Dr AlanBaddeley and Dr Alexa Hewes, of theUniversity of Bristol. UK, presented theirrecent research on this topic as a posterpresentation. They compared the performanceof children with Down syndrome, childrenwith moderate learning disability and typicallydeveloping children, all matched for vocabularycomprehension, on verbal and visual spatialshort-term memory tasks. The children withDown syndrome have equivalent visual-spatialspans but significantly lower verbal spans whencompared to the other two groups of children.

39Conference report: Florida 1997

This difference was not related to hearing lossor speech articulation rate for the childrenwith Down syndrome and they also showed no‘primacy’ effect e.g. relatively goodperformance on the first item in a list. Theauthors conclude that their results suggest aproblem in the phonological loop componentof the working memory system - perhaps rapidtrace decay or increased interference fromsubsequent items entering memory. This is animportant area for further work as this systemis critical for the support of all learning.

Adolescence and early adulthoodThree papers discussed the needs ofadolescents and young adults with Downsyndrome. Dr Don Van Dyke from theUniversity of Iowa Hospital and Clinic, IowaCity presented an overview. He identified thatthe major task of adolescence is separationfrom the family. In early adolescence the mainpreoccupations for young people are growthand puberty. For young people with Downsyndrome puberty is usually reached at theusual age, the growth spurt may be earlier andless and obesity may be a risk. This is a timewhen appearance and self-image becomeimportant, so it is important to encourage goodhygiene, a pride in appearance and fashionableclothes. Friendships and the peer groupbecome important and leisure interests andsocial competence will help the young personto be included. Dr Van Dyke emphasised theneed for good health care, including sexeducation, contraception and sexual healthcare to be available to adults and adolescentswith Down syndrome.

In a paper entitled Living in the Community,Dr Siegfried Pueschel discussed the needs ofadults if they are to participate fully in thecommunity. He pointed out that we need toconsider planning for the transition fromadolescence to adulthood, for post-secondaryeducation, for living and recreational options.We need to consider social skills, relationshipsand sexuality, medical care and mental healthissues. Dr Pueschel emphasised the need forforward planning to build up self-esteem andthe social and practical skills that will beneeded for meaningful participation in thecommunity. He also discussed employmentand living options and the need for preparationfor relationships. He particularly stressed thevalue of leisure and recreational activities,arguing that they can build self-confidence,improve motor skills and physical fitness,increase independent functioning, nurturecreativity and self expression and provideopportunities for friendships.

Adult mental healthDr William Cohen from PennsylvaniaChildren’s Hospital, Pittsburgh, shared hisexperience of treating behavioural problems ofyoung people with Down syndrome at hisspecialist Centre. About one third had somedifficulty. The most common problems weredefiant or aggressive behaviours andadjustment difficulties - typical adolescentdifficulties. One person had depression, onepanic attacks and another an eating disorder.For all adolescents with disabilities,adolescence is a particularly difficult time asthey come to realise the real impact that theirdisability is having on their lives when they seepeers and siblings moving on in ways that theyare unable to achieve. In the young adults, lessthan one third had any problems and nonewere aggressive. Depression, anxiety, eatingdisorders and obsessive compulsive disorderwere the type of problems seen, againproblems occurring in a minority of the rest ofthe population of this age. Dr Cohen gaveexamples of responses to treatments for hispatients and drew attention to one importantissue. People with Down syndrome may beinclined to talk to themselves when understress. You and I will be worrying silently inour heads, they are doing this worrying outloud and it is important that it is notmisinterpreted as a psychotic symptom.

A further paper on psychiatric disorders inadults with Down syndrome was presented byAnna Mies and Kendra Moses of SouthernIllinois University School of Medicine givingsimilar outcomes in their clinic population.They pointed out that some 20% to 30% ofadults with Down syndrome may suffer from amental disorder at some time. They are lessvulnerable than adults with learning disabilitiesfrom other causes, but may be more likely tohave depression or dementia in later life. It isimportant that doctors and carers realise that amental illness can occur and can be treated,especially as some folk will have limitedcommunication skills and their difficulties bemisinterpreted, so go untreated or be treatedinappropriately.

Issues for older adultsDr Dennis McGuire and Dr Brian Chicoine,from the Lutheran General Hospital,Glenview, Illinois shared the results of theirexperience of working with some 600 adults attheir Adult Down Syndrome Centre. They hadinformation on their self-help, social andcommunication skills as well as their healthcare needs. Some 10% of adults needed help

with all daily living skills and a further 5%needed prompts. Of the rest 38% were mostlyindependent, 40% needed some support intheir lives and 7% were able to manage selfcarebut were not socially or practicallyindependent. While 75% of adults hadcommunication which was understood bycaregivers most of the time, only 28% could beunderstood most of the time by unfamiliarothers. When it came to expressing feelings,78% could express them well non-verbally butonly 39% verbally and so many caregiversfound it difficult to interpret the expressedemotions of the person with Down syndromethat they were caring for. Especially vulnerablein this respect were those with mental healthproblems (about 30% of the group).

The most common health issues were sensorydeficits - of 602 people, 312 had impairedvision and 247 had a significant hearing lossand 351 had impacted wax in their ears!Overweight was an issue for 423 people, 222were hypothyroid, 6 had vitamin B12deficiency and 11 were diabetic. 41 haddeveloped seizures and only 33 suffered fromsleep apnoea suggesting it is less common inadults with Down syndrome than in children.Of the 300 women in the study, 49 had passedthe menopause and 89 suffered fromdysmenorrhea.

Of those with mental health problems, 87.5%were described as having a ‘reversible’ ortreatable disorder and only 12.5% hadAlzheimers dementia. (This meant that only 26of the total of 579 had dementia and theywere all over 40 years of age). This study alsodrew attention to the frequent occurrence ofself-talk, which was reported as used by 79%of the adults. Eighty percent were friendlyand social, with only 20% described as anti-social or inappropriate in their behaviour attimes.

Medical/genetic researchThere were two papers in which the progressin understanding the genetics of Downsyndrome was reviewed. One emphasized thesearch for links between genetic profiles andcognitive profiles, the other explained thepotential of trisomic mouse models for testingsome of these hypotheses. Both these speakersgave similar presentations at the Vancouverconference in April 1998, which I will bereporting on in the next issue, so I will includea little more detail then.

Two papers discussed the search for effectivepharmacological treatments for some of the

abnormalities in biochemical functioning andthe health risks associated with Downsyndrome. One was presented by Dr AlbertoCosta of the Jackson Laboratory, Bar Harborand the other by Dr George Capone of theKennedy Krieger Institute, Baltimore. Thesewere both speculative papers, discussing theareas in which research might be worthwhilebased on our current knowledge and theenormous methodological difficulties facingsuch research. Dr Capone pointed out thatthere is a need to develop a valid and reliableprotocol for accurately measuring thedevelopment of children with Down syndromebefore the effectiveness over time of anyinterventions can be reliably evaluated.

The American Down Syndrome MedicalInterest Group, which includes many of themost expert medical practitioners, biochemistsand geneticists in this field, had its meeting atthis conference. (A number of these expertsare also parents of children with Downsyndrome themselves). This meant that therewas discussion of health guidelines, areas thatneed further research and exchange of goodpractice. (There was also extensive discussionof the problems being caused by the promotionof Targeted Nutritional Interventions (‘TNI’)despite the lack of evidence for the wild claimsbeing made for its efficacy by those selling it orthose using it in their private practices). Theview of this expert group, which is to notrecommend the use of ‘TNI’, can be found onthe NDSS website.

My views on this are made clear elsewhere inthis issue and on our website. The mostdistressing aspect of this whole sorry debate isthe unnecessary stress and anxiety beingcaused to new parents by the conflictinginformation that they are being bombardedwith at present.

The Author:Sue Buckley is Professor of DevelopmentalDisability at the Department of Psychology atthe University of Portsmouth, UK. She is alsoDirector of The Centre for Disability Studies atThe University of Portsmouth and Director ofResearch and Information Services at TheDown Syndrome Educational Trust. She alsoserves as a Non-Executive Director of thePortsmouth and South East Hampshire DistrictHealth Authority and on the boards of theEuropean Down Syndrome Association and theInternational Down Syndrome Federation.

41News

NEWS

The Foyle Down Syndrome Trust opens its centreCongratulations to all those in Londonderry, Northern Ireland, who have worked so hard over thepast three years to get the Foyle Down Syndrome Trust launched, especially Gerry Craig who hadthe original vision and the fundraising talent to make it a reality. It is modelled on the constitutionof The Down Syndrome Educational Trust and is providing professional services to children andteenagers with Down syndrome and their families in the area. They now have 2 teachers, adirector and secretary in post and a centre of their own.

The Down Syndrome Educational Trust is helping with advice and training from The SarahDuffen Centre. This may be a model that others would like to develop expert services in theirarea - if so contact us to discuss the ways in which we could help you from Portsmouth.

“We are absolutely delighted to announce that the Foyle Down’s Syndrome Trust has now opened itscentre for educational and social inclusion.

“There was great excitement and a wonderful sense of achievement in Thursday 5th March, 1998 asher Excellency Jean Kennedy Smith, United States Ambassador to Ireland, officially unveiled theplaque especially commissioned for the occasion. There were representatives from the parents andchildren participating in the project, a number of adults who have Down’s syndrome, members oftrustees and invited guests.

“We are delighted to have the centre up and running and to see the hard work and effort that wentinto the pilot programme beginning to bear fruit. The new Director, Kay Devine, paid tribute to thecrucial preparatory work done in the past two years stating “I would like to acknowledge thetremendous work which the trustees and Ann Breslin put into the early years and I look forward tothe challenge ahead as our vision is further realised. This is a truly exciting time for the Foyle Down’sSyndrome Trust.

“On behalf of both the children and families, the Trustees would like to acknowledge the invaluableassistance of Professor Sue Buckley and the staff of The Sarah Duffen Centre.”

Photo: Trustees of the Foyle Down’s Syndrome TrustFrom left to right - Front row: Dessie Boyle, Her Excellency United States Ambassador toIreland, Jean Kennedy Smith, Gerry Craig, Chairperson F.D.S.T - Back row: Kay Devine,

Director, Maureen Heatherington, Sandra McCallian, Margaret McSorley Development/Outreachworker, Joe Duggan, Sean O’Kane and Noleen Dawson.

NEWS FROM THE SARAH DUFFEN CENTRE

New programme of training events 1998-9A new range of workshops has been planned for the 1998/9 school year. The education workshopswill continue to run, with an increase in training events for staff from Secondary schools. Inaddition, we have developed a range of new training opportunities for trainers, including trainingfor school outreach service workers, special educational needs co-ordinators, health visitors andsocial workers. Other events are planned for psychologists, speech and language therapists andpre-school home visiting teachers.

For parents, we have introduced a series on development for children aged 0-2, 2-4, 5-8 and 9-12,covering all aspects of development and education. We also have workshops specifically forparents on how to work effectively with schools, including how to assess and describe children’sneeds, advocate and approach placement and transition issues with increased knowledge andconfidence. Specialised workshops on teaching reading, behaviour and social development will beheld during each term.We look forward to continuing to welcome visitors from around Europe to these events. If youwould like further information, please contact The Down Syndrome Educational Trust.

Book now published in full on DownsNetThe text of the book Meeting the Educational Needs of Children with Down Syndrome, byGillian Bird and Sue Buckley, has been added to The Down Syndrome Educational Trust’s website. This book is now out of print and will not be reprinted until we have had a chance to reviseand update it. For the time being, it may be found athttp://www.downsnet.org/library/books/meeting_needs/

Open day datesThe summer Open Day is on August 26th. Open days offer opportunities for parents andprofessionals to use our library, look at and try some of the resources and discuss individualchildren’s needs with our professional staff. Those of you without access to the Internet can lookfor yourselves at the range of information available on web sites from around the world if you areto attend on either of these dates.

Computer morning, 27th JuneThe library has been extended to include computers and software for children, developed inliaison with the DSA, for which computer tables have been donated by IBM. If you are able tovisit Portsmouth on June 27th you will be able to use the children’s software yourself as we areinviting parents and children on this date, in association with the DSA. Please contact the Centrefor further details.

43Diary Dates

DIARY DATES

Conference: The Future Is Ours:1998 National Down Syndrome Society Conference

9th - 11th July 1998 - Lake Lawn Lodge, Delavan, Wisconsin, USA.

For further information contact:NDSS. 666 Broadway, 8th Floor. New York, NY, USA. 10012-2317.

Tel: +1 (212) 460-9330. Fax: +1 (212) 979-2873. E-mail: [email protected]

Family Weekend Conference5th & 6th September 1998 - at The Sarah Duffen Centre, UK

Reading and writing for beginners14th September 1998 - at The Sarah Duffen Centre, UK

Understanding developement from 0-2 years21st September 1998 - at The Sarah Duffen Centre, UK

Assessment and planning for placements28th September 1998 - at The Sarah Duffen Centre, UK

Meeting educational needs in infant schools5th October 1998 - at The Sarah Duffen Centre, UK

Meeting educational needs in junior schools12th October 1998 - at The Sarah Duffen Centre, UK

IV European Symposium - Early Intervention:Equal opportunities and quality of life for families with a young disabled child.

14th-17th October 1998 - Worriken-Center, Butgenbach, Belgium.

For further information contact:Office for Disabled People of the German-speaking Community of Belgium,

Aachenerstrasse 69-71, B-4780 St. Vith.Tel: +32 (0) 80 22 91 11 Fax: +32 (0) 80 22 90 98 E-mail: [email protected]

Developing social skills and behaviour16th October 1998 - at The Sarah Duffen Centre, UK

Understanding development from 2-4 years19th October 1998 - at The Sarah Duffen Centre, UK

Fourth European Down Syndrome Conference: Creating Challenges10th - 13th March 1999 - Malta

Organised under the auspices of the European Down Syndrome Association (EDSA) and theInternational Down Syndrome Federation (FIDS) by the Down Syndrome Association of Malta in

collaboration with the Department of Psychology at the University of Malta.

The Conference aims at bringing together persons with Down syndrome, parents, professionalsand others interested in the field in an atmosphere of mutual respect and collaboration. The

programme will consist of a number of plenary and specialist sessions, which may either focus onissues for particular groups or issues of general interest. Papers are invited for presentation at theConference, as well as proposals for themes for symposia, thematic sessions and plenary sessions.

For further information contact:Conference Secretariat Down Syndrome Association, 45 South Street, Valetta VLT11, Malta.

Tel: +356 235158 Fax: + 356 236197 E-mail: [email protected]: Scientific Secretariat, Dr Mark G. Borg, Department of Psychology, University of Malta,

Msida MSDO6, Malta. Tel: +356 32902269

The Seventh International Down Syndrome Congress23rd - 26th March 2000 - Sydney Convention and Exhibition Centre, Darling Harbour

The conference aims to provide an opportunity for people with Down syndrome, their parents,carers and families, and interested professionals to address the major issues and hear the latest

developments from international experts.

For further information contact:Congress Secretariat, Seventh International Down Syndrome Congress, GPO Box 2609,

Sydney, Australia 2001Tel: +61 2 9241 1478, Fax: +61 2 9251 3552, E-mail: [email protected]

New Millenium - Research to PracticeInternational Association for the Scientific Study of Intellectual Disabilities (IASSID)

1st - 6th August, 2000 - Seattle, Washington, USA.

The 11th World Congress of the IASSID plans to bring together more than 1,500 people for aninternational exchange of knowledge and ideas. Participants will be able to develop networks of

colleagues which can lead to collaborative research and consultation. One of the major benefits ofthe World Congress is the opportunity for colleagues working in different parts of the world tobecome acquainted with each other’s research, innovations and exemplary practices. Attendeeswill also be able to consider ways in which these research advances can have a beneficial effect

upon supports for individuals with an intellectual disability and their families.

For program information contact:Dr. Neil Ross, President-elect, Association de Villepinte (IASSID), 28 rue de l’Eglise,

Villepinte 93420, France.Tel: +33 1 43 85 12 06, Fax: +33 1 49 36 11 54, E-mail: [email protected]

IASSID Homepage Address: http://www.waisman.wisc.edu/iassid/

Tell us about your eventsIf you have any forthcoming events that you would like included in forthcoming Diary pages inDown Syndrome News and Update, feel free to send us information (address on page XX, oremail [email protected]). Once we have it up and running, events willalso be added to an events database which will be accessible from the DownsNet web site(http://www.downsnet.org/).

For information about any of the events at The Sarah Duffen Centre, please call for a copyof our Training Events brochure.

45

Research activitiesIn collaboration with the University ofPortsmouth, The Down Syndrome EducationalTrust supported seven postgraduate researchprogrammes during 1997. Its support rangedfrom full funding (two projects) to supportthrough assessment and library resources,family contacts, advice and conferencefunding. In addition, the Trust assists projectsundertaken by BSc and MSc students. During1997, these included a study of phonologicalawareness in children with Down syndromeand a study of self-concept in adolescents withDown syndrome in special and inclusive schoolsettings.

Reading, language and memorydevelopment in primary school agechildrenThe Down Syndrome Educational Trustcontinued a longitudinal study of languagedevelopment in children with Down syndromein mainstream schools during 1997. This studyhas now been in progress for four years inconjunction with Centre for Disability Studiesat the University of Portsmouth. The firstthree years’ data formed the basis of asuccessful PhD thesis by Angela Byrne, andhad funding from the University ofPortsmouth. Further study has been funded byThe Down Syndrome Educational Trust.

The investigation showed that the majority ofthe children with Down syndrome hadacquired some useful reading skills during theirearly school years and that reading is typicallya strength for these children compared to theirother cognitive skills. Most of the childrenwith Down syndrome relied upon visualstrategies to learn a sight vocabulary. The mostable readers who had achieved reading ages of7 and above were also able to make use oftheir alphabetic skills to extend their readingvocabularies.

DownsEd Limited supported the presentationof a paper based on this research, by Angela, atthe 6th World Congress on Down Syndrome inMadrid in October. Since completing her PhD,DownsEd Limited has employed Dr. Byrne tosupport services and publishing activities.During 1998, Angela will oversee further datacollection and analysis.

Education in mainstream schoolsCollection and dissemination of examples ofgood practice in meeting the educational needsof children with Down syndrome across theage range continued throughout 1997.Individual differences, transition to secondaryschool, behaviour management, and differentmodels of support have been of particularinterest.

Information collected has been of value fortraining events and individual consultancy.Application of research into cognitivedevelopment applied to classroom practice wasdocumented for this purpose but has yet to bewritten for publication.

Hampshire’s mainstream school placementshave enabled research into peer relationshipsto be successfully undertaken for BSc projectsin 1996 and published in the journal DownSyndrome Research and Practice.

Reading and language in pre-schoolchildren with hearing impairments orDown syndromeA comparative investigation of reading andlanguage development in children with hearingimpairments, children with Down syndrome,and children without disabilities recommencedin the autumn of 1997. The Down SyndromeEducational Trust is funding MicheleWhitcombe, as a part-time PhD student, tocomplete this study.

Numerical skillsThe study, started in 1995, is investigating thedevelopment of early number skills, includingcounting and conceptual knowledge,longitudinally in a group of children withDown syndrome. Joanna Nye is carrying outthis research for a PhD with the Departmentof Psychology at the University of Portsmouth.The project was wholly funded by thePortsmouth Down Syndrome Trust in the firstyear. It is currently supported by a bursary andexpenses budget from the University ofPortsmouth, and by The Down SyndromeEducational Trust through use of facilitiesincluding rooms, video-recording equipment,test materials and contacts with families.

SUPPLEMENT: THE DOWN SYNDROMEEDUCATIONAL TRUST, REVIEW OF ACTIVITIES, 1997

During 1997, the first year of data collectionfor this longitudinal project was completed. Intotal 55 children with Down syndrome andtheir families were seen for pilot and mainstudies, 26 of whom have been invited toreturn for follow-up assessments in Years 2 and3. Analysis is ongoing.

DownsEd Limited supported Joanna’sattendance to present a poster based on part ofthe data collected in the first year at the 6thWorld Congress on Down Syndrome in Madridin October.

Speech and language interventionThis study, started in 1994, is evaluating theeffectiveness of early intervention for speechand language development. Pat Le Prevost iscarrying out this research for a MPhil withpart-funding from Oxford NHS Trust. Acomparison of two groups of 5-7 year olds whohad experienced different interventions wascompleted in 1997 and a longitudinal study ofinfants was continued. A focus of this projectis to explore the individual variation inlanguage progress between children and theuneven profile of development of language.

Data from the first study was presented by Patat the 6th World Congress on Down Syndromein Madrid in October. This study shouldprovide information that will enable speechand language therapy to be tailored moreeffectively to individual need.

Cognitive and social development ininfancyDuring 1997, Brickshand Ramrattan continueda project exploring the links between visualrecognition memory, cognition and socialcommunicative skills in infants with Downsyndrome. A paper on this work has recentlybeen accepted for publication in DownSyndrome Research and Practice. The DownSyndrome Educational Trust is continuing tooffer library and computing resources insupport of this project.

Social skills and peer relationships ininclusive educationMary Ramrattan continued an investigation ofthe social interactions of children with Downsyndrome and their mainstream peers ininclusive education settings. This workdeveloped from a study identifying the limitedsocial lives of adults with learning disabilitiesliving in the community.

Reading and language development inadultsIn September 1997, Christine Jenkins, anexperienced speech and language therapist, wasawarded a full-time research bursary by theNHS Executive (South and West) Research andDevelopment Directorate. Christine is a part-time lecturer at the Department of Psychologyat the University of Portsmouth. Her three-year project will investigate the effectivenessof teaching reading to improve the spokenlanguage skills of adults with Down syndrome.

Support and advice servicesSupporting children in mainstream schools inthe south England areaThe Down Syndrome Educational Trust hasbeen supporting children with Down syndromein local schools since 1986. The Trust providedregular support for 38 children and schools inHampshire during 1997. The Trust provided56 visits to schools in Hampshire andsurrounding areas. These visits often coincidedwith attendance at children’s annual reviews.The Down Syndrome Educational Trust hasadditional links, through research projects,with children attending schools in West Sussexand the Isle of Wight. In April 1997,Portsmouth City Council awarded a grant of£17,000 over 12 months towards the Trust’sadvice and support service for localmainstream schools with children with Downsyndrome.During 1997, schools from across the UK andabroad also maintained links for advice onclassroom practice and research information.There have been meetings between The DownSyndrome Educational Trust’s staff andteaching advisory services in Surrey, Oxford,Northern Ireland, Ireland and West Sussex.

The Trust provides advice and information toInfant, Junior, and Secondary schools. Thisincludes information about the children’slearning strengths and weaknesses, teachingreading and writing, language and memorydevelopment, speech and communication,handwriting skills, numeracy and socialdevelopment and behaviour. All advice is basedon current research and is individually appliedto the child’s profile, class, and schoolcharacteristics. The provision of individualadvice benefits the children, their families andschools, through the continuation ofplacements in mainstream school. This servicealso provides examples of good practice for usein training and for wider dissemination.

47Supplement

In addition to school visits and attendance atannual reviews, schools have accessed services,library and teaching resources through trainingat The Sarah Duffen Centre, at ‘Open Days’and through individual consultations and theadvice line. Many LEA’s have received trainingin their own localities.

Schools in Portsmouth received a higher levelof services and provision of training for schoolstaff and parents in fulfilment of thePortsmouth LEA grant.

Early Development and Speech andlanguage groupsTwo ‘Early Development’ groups and a ‘Speechand Language’ group are provided by TheDown Syndrome Educational Trust. Thesegroups offer support, information, andstructured teaching activities to families whoare within regular travelling distance ofPortsmouth. ‘Early Development’ groups havebeen provided in since 1983.

During 1997, two ‘Early Development’ groupsmet during school terms for two hours onalternate weeks. One group is for children aged18 months to 2.5 years, and the other group isfor children aged 2.5 to 5 years. The first houris informal for mutual parent support anddiscussion of individual concerns withprofessional staff. The second hour offersstructured activities to assist the children withtheir language, speech, communication, andsocial learning needs.

Advice and structured teaching activities areinformed by current research and provenmodels of good practice. Families attend thestructured activities on a regular basis to gainmaximum benefit for their children’sdevelopment.

Parents of new babies are welcome to attendthe groups for support and advice, and 26regular attendees for the structured learninggroup came from Hampshire, Berkshire,London, Surrey, West Sussex, Devon andHertfordshire.

Since September 1997, Children in Need havebeen contributing to the costs of running the‘Early Development’ groups and the costs ofadditional groups. This has enabled theprovision of a regular group focused on speechand language development.

The ‘Speech and Language’ group meetsweekly during school terms. The group

provides one hour of work in a group for thechild and his or her parent in attendance, withadditional weekly ‘speech’ homework. Thegroup commenced in September 1997 and isattended by 5 children, aged 4 to 7 years, withparticular speech and communicationdifficulties. The children have shownimprovements in speech, work habits andbehaviour and the format of the group isalready being used as a model by other Speechand Language therapists around the country.

At the end of 1997, there was a waiting list forattendance at the early development groupsand the speech and language group.

Open DaysFour Open Days ran at The Sarah DuffenCentre during the school holiday breaks inApril, May, August and October. They offerparents and professionals an opportunity tomeet The Sarah Duffen Centre’s professionalstaff and to learn about the resources andservices available at The Sarah Duffen Centre.A total of 55 adults and 43 children attendedthe Open Days.

The Trustees plan to run five Open Daysduring school holidays in February, April, May,August and October 1998.

Psychological assessment andindividual consultation serviceThe Down Syndrome Educational Trustprovided 59 assessments and 37 individualconsultations during 1997. Individualpsychological assessments offer an opportunityfor families to consider their child’sdevelopmental history, development and skillsin detail, with assessment of skills and abilitiesled by a psychologist. They then receive adviceon how to promote the cognitive, social andbehavioural development of their child througheducational and family activities.

Assessments and consultations fall into threecategories. Assessments for pre-school childrenexamine all areas of development, with anemphasis on speech, language and cognitivedevelopment, and often to contribute to LEAstatements identifying educational needs.Assessments for school children aid progress inInfant, Junior and Secondary schools, in specialas well as mainstream schools. Assessments forchildren with atypical development offerhighly individual and specific advice. These canfocus on, for example, behaviour thatchallenges their families and those workingwith them in school, lack of speech and poor

communication skills, including autisticspectrum disorders, or more severedevelopmental delay. The Trustees recognisethis third group as being in particular need ofhigh quality assessment, services and familysupport.

A fee of £300.00 for a full assessment andwritten report is requested for the assessmentservice and full written report, and £200.00for an assessment without full written report.Fees of £37.50 per hour are requested for theindividual consultation service. For detailedwritten reports, particularly for reports thatare required for Tribunals, the costs oftenexceed the fee. When this occurs, the Trustsubsidises the difference. When resourcespermit, The Down Syndrome EducationalTrust does not request fees from families onIncome Support. The Trustees of The DownSyndrome Educational Trust and the Directorsof DownsEd Limited anticipate having toincrease these fees from September 1998.

Advice LineThe Down Syndrome Educational Trustprovides an AdviceLine service for parents andprofessionals. While families with new babieswill be spoken to as soon as is possible, schooland parents requiring a detailed response weredirected towards a telephone AdviceLineduring two half-day slots per week. During1997, The Down Syndrome Educational Trustresponded to over 1,500 telephone calls, 350letters and 140 e-mails for detailed, individualadvice. This service is freely accessible andsupported from general charitable funds,including proceeds from trading activities.

The Trustees of The Down SyndromeEducational Trust realise that this service ishighly valued by those who utilise it. However,it consumes considerable time and resources,and is therefore expensive to provide. In orderto meet growing demands on this service, TheDown Syndrome Educational Trust will needadditional funding during 1998. It will alsoseek ways of increasing the efficiency of advicedelivery. Measures that increase efficiency willundoubtedly involve reducing the amount ofindividual advice, and greater use of ‘standard’advice sheets. The challenge will be to identifywhen individual advice is necessary, and when‘standard’ advice sheets will suffice.

Information ServiceThe Down Syndrome Educational Trustresponded to 90 queries from researchersstudying, researching or interested in the

development and education of children withDown syndrome during 1997. Responsesincluded specialist bibliographic searches,reference lists, and article reprints.

Teaching and trainingactivitiesWeekend conferences for parentsThe Down Syndrome Educational Trustorganised two weekend conferences during1997. Over 100 participants attended. Leadingnational specialists offered sessions covering arange of subject areas. These included ‘earlycommunication skills’, ‘later communicationskills’, ‘the statementing process’, ‘computersas teaching aids’, ‘language, reading andwriting’, ‘numeracy skills’, ‘memory skills’,‘how to change children’s behaviour’,‘handwriting’, ‘learning development’, ‘medicalissues’, ‘family adjustment’ and ‘educationissues’.

Fees to cover the costs of these events are keptto minimum thanks to the voluntaryattendance of most of the expert speakers.However, the Trustees of The DownSyndrome Educational Trust and the Directorsof DownsEd Limited anticipate having toincrease these fees from May 1999.

Regular workshops for parents andprofessionalsDownsEd Limited provided 20 one-day andtwo-day workshops at The Sarah DuffenCentre throughout 1997. These were attendedby around 300 parents, teachers, educationalpsychologists and speech and languagetherapists. The workshops covered a variety ofeducational and development subjects,including meeting educational needs, earlydevelopment, speech and languagedevelopment, psychological assessment andneeds, reading, social development andbehaviour. A small but successful daydedicated to meeting educational needs in thesecondary school was piloted as a new trainingdevelopment in 1997 and similar training daysare now fully booked for 1998, and plannedwith increased frequency for 1999.

Evaluation records by participants for alltraining events were very positive. As withcomments about other services, theseevaluations are monitored by the Trust’sprofessional team and by a ‘Services AdvisoryCommittee’ of parent representatives.However, there were comments from teacherswho felt that The Down Syndrome

49Supplement

Educational Trust should keep schools betterinformed of training events, and its otherservices. Most of these teachers had heardabout the workshop from parents whosubscribed to the Trust’s newsletter, and feltthat other teachers would benefit fromknowing about the workshops.

This issue was addressed by a significant directmarketing initiative in the autumn of 1997.Following this initiative, enquiries and bookingsfor workshops during 1998 have increasedconsiderably.

Specialist teaching materialsIn order to fill a gap in the range ofcommercially available teaching materialsparticularly suitable for younger children, theprofessional staff at The Sarah Duffen Centredevised five teaching packs. Four of the packsteach language and speech using pictures, andeach set has a particular additional function.

The Language Cards can be used to teach,reinforce, and extend first vocabulary. Thispack includes 54 colour photographs, withwritten words on the reverse of each card forteaching nouns, verbs, early adjectives andprepositions. The written words also functionto introduce the reading of single word itemsand short phrases. The pictures and words helpdevelop signed and spoken language. Eachpicture is a colour photograph, with the verbsdemonstrated by young children with Downsyndrome and their parents.

The Lotto pack teaches matching, beginningwith two familiar items, and progressing to alarger lotto board for matching six pictures. AFirst Picture Dominoes teaches side by sidematching of pictures, with the adjacentpictures facing in the same direction. Whenchildren have mastered the lotto and dominoesthey are then able to succeed with the moretypical commercially available matching anddomino games.

Sound Cards help to develop early listeningand perception of individual consonant soundsand enable the child to practice saying thesounds. A clear colour picture represents eachsound, and the corresponding sign symbol is onthe reverse of each card. The picture helps thechild to remember the sound and the sign. Thechild can also ‘make’ the sound and join in thegame by signing at a stage when he or she maynot be able to produce the sound clearlywithout visual and gestural support. Perceptionand production of sounds are fundamentalbuilding blocks for learning to speak clearly.

The more practice young children receive themore automatic these abilities become, thusassisting the more difficult job of saying aseries of sounds in succession to create spokenwords. While all children benefit from suchpractice, some children require this type ofactivity to be able to progress forward inlearning to speak. The Down Syndrome Educational Trustreceived grants to assist with the production ofthese materials from the Down’s SyndromeAssociation (£15,000) and Portsmouth CityCouncil (£3,500). The overall cost of theproduction of the first four packs was £52,000and DownsEd Limited has funded the balanceof £33,500.

Sales of these materials have been solid, butnot as much as initially hoped. However, theTrust has received plenty of positive commentsfrom the families and teachers using them.Unfortunately, the slow sales have delayed theproduction of the fifth pack, to teach languagethrough reading.

Information disseminationactivitiesLectures and workshops - overseasTrust staff presented 18 lectures andworkshops outside of the United Kingdomduring 1997, of which 5 were keynotepresentations at international conferences.Apart from a number of presentations at the6th World Congress on Down Syndrome, theseoverseas engagements were conducted byProfessor Sue Buckley and Professor BenSacks.

Professor Buckley presented lectures andtraining on reading, language, cognitivedevelopment and meeting educational needs inMalta, Ireland, Jersey, Holland, the UnitedStates, Australia, Norway and Spain. ProfessorSacks presented lectures on health, behaviour,sexuality and adolescent issues, in Holland,Spain, and Jersey. These presentations willhave reached around 4,000 delegates, includingparents and professionals.

Engagements during 1998 already includepresentations in Canada, Australia, NewZealand, Singapore, Fiji, Portugal, Holland,Ireland, and Norway.

6th World Congress on DownSyndrome, MadridIn October the 6th World Congress on DownSyndrome was held in Madrid. The Down

Syndrome Educational Trust was exceptionallywell represented, with five staff makingpresentations, including 2 keynote speakers.Most of these speakers presented researchconducted by The Down SyndromeEducational Trust in conjunction with theCentre for Disability Studies at The Universityof Portsmouth. The subjects discussedincluded cognitive and academic attainment inchildren, early intervention programmes,number development, behaviour managementin adults, and practical implications ofpsychological research.

DownsEd Limited organised an exhibitionstand at the congress. This stand distributedinformation about the work of the Trust, andits services and products. The display includedthe new teaching materials and the full rangeof books and periodicals. A display and mobiledemonstration of the web site content alsofeatured on the stand.

Visiting lectures and workshops - UKStaff led 13 workshops and training daysaround the United Kingdom during 1997.These included events in London, Surrey,Essex, Wales, Cambridge, Sussex, Norfolk, andSuffolk. The majority of these workshops wereprovided for teachers and educationprofessionals, though many included parents.With an average attendance of 80 people perday, these workshops reached about 1,000people. In 1998, 24 training days are bookedfor UK venues.

2nd International Conference onLanguage and CognitiveDevelopment in Down SyndromeIn April 1997, the Portsmouth Down’sSyndrome Trust and the Down’s SyndromeAssociation (England, Wales, N.Ireland)sponsored the 2nd International Conference onLanguage and Cognitive Development in DownSyndrome, which was hosted by the Universityof Portsmouth. Seven of the world’s leadingresearchers in this field gave presentations andsome 80 participants attended.

Regular periodicals published for aworld-wide audienceDownsEd continued to publish DownsEd Newsduring 1997. The launch of a new periodical,DownsEd Update, was delayed until early1998. This new publication, which is topublished four times per year, seeks to offermore detailed practical advice for teachers,

speech and language therapists and generalpractitioners, as well as parents, than isprovided in the newsletter.

Similarly, the journal, Down SyndromeResearch and Practice was delayed due to lackof submissions. Down Syndrome Research andPractice is a peer-reviewed academic journal,with an independent editorial board, that ispublished by The Down Syndrome EducationalTrust. The editorial board includes many of theworld’s leading researchers into Downsyndrome. The final issue of volume 4(originally due in late 1996) was published inDecember. However, Down Syndrome -Research and Practice was nominated as theofficial journal for the 6th World Congress onDown Syndrome and many submissions havebeen received since October. The DownSyndrome Educational Trust is thus confidentthat all six issues of volumes 5 and 6 will bepublished during 1998.

Subscribers to these periodicals include bothparents and professionals involved in the careof people with Down syndrome from aroundthe world.

Internet information resources for aworld-wide audienceHaving established a presence on the Internetin mid-1996, DownsEd continued to expandthe range of information available on its website (http://www.downsnet.org/). By the endof 1997, this included all the key articles fromDownsEd News and Down Syndrome Researchand Practice that had been published up untilearly 1997.

Around 20,000 visits were made to the website during 1997, equating to approximately8,000 different users.

Visits to the site grew steadily as content wasadded during the early part of the year. Thisgrowth accelerated during last few months of1997, following a display and demonstration ofthe site at the 6th World Congress on DownSyndrome in October. Currently the sitereceives an average of 1,000 visitors eachweek.

Expanded range of recommendedliterature offered through mail-orderserviceTo promote the dissemination of informationto parents and professionals, DownsEd Limitedexpanded the range of books and teaching

51Supplement

materials stocked by its mail-order businessduring 1997. The Trust’s professional teamselected these items to represent the best ofthe available literature and teaching materialsfor assisting children with Down syndrome.The range compliments the books, periodicals,and teaching materials published by The DownSyndrome Educational Trust.

This expanded range was launched inconjunction with new services and trainingevents for the 97/8 academic year in theautumn, and promoted at the 6th WorldCongress on Down Syndrome in October. Themail order service has been used by over 2,000customers over the past year.

Resources expansion plansIn December 1996, the National LotteryCharities Board and the Single RegenerationChallenge Fund pledged capital funding ofprojects to expand The Down SyndromeEducational Trust’s physical resources. Bothprojects sought to refurbish parts of theVictorian school building that The DownSyndrome Educational Trust partly-occupies.

The first project was to develop expandedresources for Family Services in the north-westwing of the building, including additionalplayrooms and observation facilities, and afamily resource room. Coupled with additionalfurniture and observation equipment, this wasto enable the provision of additionaleducational groups and assessment services.The National Lottery Charities Board awarded£354,000 to fund this project in December1996.

The second project was to develop newresources for teaching teenagers and adults inthe east wing of the building, including multi-purpose teaching rooms, and a sports and artshall. These facilities were to enable the Trustto develop its research beyond earlyintervention and education, and to developeducational services and models of bestpractice in partnership with the local FurtherEducation provider. £764,000 was awarded inDecember 1996 through the Portsmouth andSouth East Hampshire Partnership bid to theUK government’s Single Regeneration Budget(III) Challenge Fund.

As 1997 progressed, plans were furtherdeveloped and negotiations over the propertycommenced. The Victorian school building isheld under a charitable Trust. Until April1997, this Trust was managed by Hampshire

County Council. From April 1997,responsibility for management of the propertypassed to Portsmouth City Council as part ofwider changes involved in its becoming aunitary authority.

By December 1997 The Down SyndromeEducational Trust and Portsmouth CityCouncil had not been able to agree thenecessary lease terms that were required tofulfil the projects’ objectives. The offer fromthe National Lottery Charities Board waslimited to one year and thus lapsed in mid-December.

The Trust is currently investigating alternativeoptions for the development of theseadditional resources and seeking additionalfunding to compliment the offer from theSingle Regeneration Budget (III) ChallengeFund which still remains.

Relationships with otherorganisationsDown’s Syndrome Association(England and Wales)DownsEd has a positive working relationshipwith the Down’s Syndrome Association (basedin London and serving families in England,Wales and N. Ireland). The two organisationshave different and complementary aims:

• The Down’s Syndrome Association’s main aims are to support parents through parent networks and the provision of information and to change public awareness/attitudes to Down syndrome.

• The Trust’s main aims are to promote the development and education of children withDown syndrome. The Trust achieves these by conducting original research and by providing professional advice and training tothe parents and professionals who care for those with Down syndrome.

The Directors of both organisations meetregularly to ensure that they work together andmaximise their resources. The Down’sSyndrome Association provides funding forsome of the Trust’s projects, including £15,000towards the production costs of teachingmaterials during 1997.

During 1997, the Down’s SyndromeAssociation appointed regional DevelopmentOfficers to serve and develop membership ofthe national organisation.

Wessex DSAThe Wessex Branch of the DSA held itsOctober meeting on computers at The SarahDuffen Centre in October 1997.The Chichester Down Syndrome Group alsovisited The Sarah Duffen Centre for anevening meeting and use of library facilities.

The University of PortsmouthThe Down Syndrome Educational Trust’shistorical links with The University ofPortsmouth have developed into an alliancepromoting scientific research and disseminatingquality advice.

The research conducted by this partnership hasearned international acclaim. DownsEd nowhas research links with all the other majorinternational researchers in the field.

The Pro-Vice Chancellor, Dr. MichaelBateman, of the University of Portsmouthbecame a Trustee of The Down SyndromeEducational Trust in May, 1997.

European Down SyndromeAssociation (EDSA)Professor Sue Buckley, is a Vice-President ofEDSA and regularly contributes to EDSAscientific meetings in Europe. In October shewas appointed Chair of EDSA’s ScientificAdvisory Board. The Trust is hosting a webpage for the European Down SyndromeAssociation on its website and is planning tostart a Bulletin Board for researchers toencourage European collaboration.

International Down SyndromeFederations (FIDS)Sue Buckley is a member of the Board of thenewly established international federation.FIDS has adopted the academic journalpublished by The Down Syndrome EducationalTrust, as its official journal for its members.

Down Syndrome AssociationsworldwideThe Down Syndrome Educational Trust is usedas a resource by the parent associations inmany countries. In 1997, the Trust was invitedby parent associations to provide training inIreland, Jersey, Holland, Norway and Spain. In1998, the Trust is booked to provide 38 daysof training by 19 associations/ professionalgroups abroad.

The Trust’s publications and research findings

are being used all over the world to helpparents and to support practice. The Trust’swebsite has become a particularly valuedresource in many other countries.

In 1997, the publication Meeting theEducational Needs of Children with DownSyndrome was translated into Spanish andDutch.

The Trust is being used as a model for thedevelopment of similar organisations in the UKand in other countries. The Foyle DownSyndrome Trust in Northern Ireland is the firstto be established and the Down SyndromeEducational Trust is providing consultancy andstaff training for the Foyle group. Discussionsare in progress with four other groups planningsimilar ventures.

53Submission

Aims and scopeDown Syndrome News and Update aims toprovide information to meet the needs of avariety of professionals and parents caring forindividuals with Down syndrome around theworld. It covers a range of subjects includingearly cognitive development, speech andlanguage, general health, medical issues,education, behaviour, numeracy, social skills,and issues in adolescence and adulthood.Information is presented through detailedarticles, reviews, research summaries, casestudies, news, and by correspondence.

Down Syndrome News and Update should beof interest to parents of individuals with Downsyndrome as well as speech and languagetherapists, doctors, psychologists, teachers, andother education and healthcare professionals.

Down Syndrome News and Update aims toprovide a platform for the exchange ofexperiences and observations, as well as thedissemination of practical information. Ittherefore welcomes a diverse range ofsubmissions for publication from shortcorrespondence to detailed ‘subject overviews’.It welcomes contributions from professionalpractitioners and researchers, and from parentsand individuals with Down syndrome wishingto share experiences and views.

GuidelinesLonger articles and reviewsArticles may take the format of a detailedanalysis of a particular subject or issue, or asummary review. Detailed ‘subject overviews’should draw on current scientific knowledgeand clearly explain how this guides ourunderstanding of effective interventions.Articles should contain sufficient backgroundand information to be understandable toreaders with little or no previous knowledge ofthe subject matter.

Summaries of research are encouraged butshould be accessible to a wide range of readers.Researchers are particularly encouraged todraw out implications for effective practicefrom research studies. Detailed academicpapers presenting research findings should besubmitted to Down Syndrome News andUpdate’s sister publication, the journal Down

Syndrome Research and Practice.Shorter case studies, resourcereviews, and personal experiencesAccounts of personal experiences of parents,professionals and individuals with Downsyndrome are welcomed. Ideally, they shouldfocus on a particular issue or concern. Bothaccounts of particular successes and solutions,and accounts of difficulties or problems, areencouraged. Shorter or more general accountsof personal experiences may be submitted ascorrespondence.

Reviews of books, teaching materials,educational computer software, as well asInternet and other electronic media resources,are all welcome. Full details of the subject ofthe review should be provided; e.g. publisher,source, ISBN, price, etc.

NewsNews items are welcomed from around theworld, and in particular from organisationssupporting individuals with Down syndrome intheir particular region or country. A diary isavailable for notifications of a variety of events.This will eventually be linked with an eventsdatabase on The Down Syndrome EducationalTrust’s web site.

CorrespondenceCorrespondence from readers is particularlyencouraged whether as feedback on previouslypublished material or as an expression of viewsand experiences.

Editorial reviewAll submissions will be editorially reviewedwith particular regard for comprehensibility toa wide range of professions and parents. If thereviewers recommend publication of an article,but suggest amendments to it, the personsubmitting the paper will be invited toconsider those changes before a final decisionto publish is made. The Editor reserves theright to edit notes, reports and othersubmissions when printing and publishingtimetables make consultation with authorsdifficult.

INFORMATION AND GUIDELINES FORCONTRIBUTORS

SubmissionsAddress for correspondenceArticles, reviews and correspondence should allbe sent to:

The Editor, Down Syndrome News andUpdate, The Sarah Duffen Centre, BelmontStreet, Southsea, Hampshire, England, PO51NA.

Manuscript requirements for longerarticles and reviewsPlease send four copies of your manuscript,which should be typewritten and double-spaced on A4 paper, with any tables orillustrations. At the same time, please submityour article on a 31/2-inch floppy disc in PCformat. Word processors’ file formats that canbe supported are (in order of preference):Word for Windows 97, Word for Windows 95,Word for Windows 6, Word for Macintosh 5.1,WordPerfect 6, WordPerfect 5, Works forWindows 4.0, Works for Windows 5.0, or RichText Format (RTF). Tables and graphs may besubmitted in the following spreadsheetpackages’ file formats (in order of preference):Excel 97, Excel 95, Excel 6.0, Lotus 1-2-3, orQuattro Pro. Graphs and diagrams that aresubmitted as ‘graphics’ file formats should besaved as (in order of preference): GraphicsInterchange Format (GIF), Portable NetworkGraphics (PNG), Corel PhotoPaint (CPT),TIFF Bitmap (TIF), Adobe PhotoShop (PSD),or Windows Bitmap Format (BMP).

Please ensure that your address is attachedand, where possible, include direct telephonenumbers, fax numbers and electronic mailaddresses.

FormatThe suggested title should appear on the firstpage of the manuscript. The name(s), title(s)and affiliations of the author(s) should appearon the second page. Where there is more thanone author, indicate who should receivecorrespondence. All papers should be inEnglish and spellings should be British.

Sub-headings are encouraged, and should betyped in bold. If sub-headings are of differentsizes, please indicate clearly. Bibliographicalreferences within the text should be made byciting a reference number in brackets, e.g.“(2)”. Notes are encouraged for additionaldetail and commentary where appropriate andshould be referenced with small romannumerals in brackets, e.g. (iv).

TerminologyAs this is an international and an inter-disciplinary publication, the needs of readersfrom different backgrounds should be born inmind. Technical or other terms specific to aparticular discipline should be avoided ifpossible; otherwise discrete explanations or aglossary might be added. Abbreviations, such asof journal titles, should be avoided.

Authors should avoid the use of potentiallydevaluing terminology for people with alearning disability. The terms ‘children with adevelopmental disability’ or ‘withmoderate/severe learning difficulties’ areacceptable. The terms ‘mental handicap’ and‘mental retardation’ are not. The term ‘Downsyndrome’ should be written in full, and‘syndrome’ spelt with a small ‘s’ except whenin a title. Please refer to ‘children with Downsyndrome’ rather than ‘Down syndromechildren’.

GlossaryWhere technical terminology is used, pleaseprovide a glossary before the references.

ReferencesA full list of bibliographical references, cited inthe text, should appear at the end of thepaper. The list should be numbered in order ofcitation in the main text. Entries should adoptthe conventions described in the APA styleguidelines as contained in The PublicationManual of the American PsychologicalAssociation 4th ed., 1994 (Subject Reference:808.02 AME). Some examples follow:

ArticlesHitch,G.J., Halliday,S., Schaafstal,A.M. andSchragen,J.M.C. (1988). Visual workingmemory in young children. Memory andCognition, 16, 120-132.

ChaptersLight, P. (1985). The development of view-specific representation considered from asocio-cognitive standpoint. In N.H. Freeman(Ed.), Visual Order: The Nature andDevelopment of Pictorial Representation (pp.214-230). Cambridge: Cambridge UniversityPress.

55

Article (World Wide Web reference)Rondal, J., Comblain, A. (1996) Language inAdults with Down syndrome. Down SyndromeResearch and Practice [Online], 4(1), 3-14.Available: DownsNet, The Down SyndromeEducational Trust.http://www.downsnet.org/research/articles/lang_adult/default.asp [Accessed: 1998, March20].

ADVERTISING AND SPONSORSHIPIf you, your organisation, or even the company you work for would like to support thispublication, you may like to consider advertising or sponsorship.

Organisations may become sponsors by committing to a regular contribution to the production’soverheads. Sponsors will be acknowledged for their support.

Organisations may wish to advertise services, products or events. Although we are happy topublish brief information about events and reviews of products, organisations may wish to displaymore information.

For further information about sponsorship or advertising in Down Syndrome News and Update,please contact Frank Buckley at The Down Syndrome Educational Trust, or email [email protected]

The Down Syndrome Educational Trust currently underwrites the costs of this publication. Receiptsfrom sponsors and advertisers will help to keep subscription prices down and ensure that thepublication reaches the widest possible audience.

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