Voice March 2010 - Education

MARCH 2010 - Education

Members Journal

2 Voice, March 2010. Down Syndrome Victoria and Down Syndrome NSW Members Journal

Down Syndrome Victoria and Down Syndrome NSW Members Journal

Voice contact [email protected]

ph. 0409 911 913

Editorial CommitteeManaging Editor:

Jill O’Connor, Down Syndrome NSW

Sharon Ford, Down Syndrome Victoria

Janene Trickey, Down Syndrome Victoria

Kathi Beck, Down Syndrome NSW

Down Syndrome NSWPO Box 9117 Harris Park NSW 215080 Weston Street,Harris Park NSW 2150

ph: 02 9841 4444 fax: 02 9841 4400

email: [email protected]

web: www.dsansw.org.au

Down Syndrome Victoria 219 Napier Street, Fitzroy VIC 3065ph: 03 9486 9600 1300 658 873

fax: 03 9486 9601

email: [email protected]

web: www.downsyndromevictoria.org.auPrinted by White Lion Graphicswww.whiteliongraphics.com.au

Front coverTwins Hannah and Kit Ingham started school in January, in Sydney

Editorial policy statement The views expressed in articles and material included in Voice journal are not necessarily those of Down Syndrome New South Wales or Down Syndrome Victoria. We aim to report current best practice and relevant, interesting information to members on all aspects relating to Down syndrome, and to provide a forum for others. We do not promote or recommend any therapy, treatment, institution, professional system etc. We do not espouse any particular political or religious view. Individuals or organisations referred to are not necessarily endorsed by this publication, its Editors or either state association.

Privacy policyIt is the right of members of Down Syndrome New South Wales and Down Syndrome Victoria to know that all personal information collected is used solely by the associations in accordance with the Commonwealth Privacy Act guidelines and will not be disclosed to another party except as required by law. All photographic materials provided by members or acquired at the associations’ events will be used tastefully and professionally. Members should be aware that photographs from Down Syndrome New South Wales and Down Syndrome Victoria events are taken with the understanding that subjects realise the images may appear in the associations’ publications and on the website. Members have the right to refuse to be photographed at such events.

Reprint policyPermission is given for other not-for-pro t organisations to reprint original material from this journal on the condition that the author’s name is included and the original source acknowledged as: Voice, Down Syndrome Victoria and Down Syndrome NSW Members Journal (month, year). Permission from the Editors must be sought if the material is to be used in publications for sale. Note that to reprint material from a secondary source, permission must be sought from the original publisher. Please direct reprint enquiries to the Managing Editor at [email protected]

Volume 1, Issue 1ISSN 1837-7998

Voice March 2010 draft.indd 2 2/15/2010 11:09:48 AM

Voice, March 2010. Down Syndrome Victoria and Down Syndrome NSW Members Journal 3

Education

In this issue ....

Education

Learners with Down syndrome 4

Working in positive partnership with your child’s school 7

Using visual tools to support classroom communication and learning 11

Key resources on education 16 Noticeboard 17

My Voice 18

Research 20

News 21

Reviews 22

Connections 23

Endnote 24

Welcome to our March 2010 issueWelcome to the rst issue of Voice published as the collaborative journal of our two organisations, Down Syndrome Victoria and Down Syndrome NSW. While some parts of our lives operate under separate State jurisdictions, we have much in common in our endeavors to support families of people with Down syndrome. Our collaboration aims to capitalise on the strengths of both organisations, and to streamline the use of resources. You will nd a supplement that relates to your own state, in addition to the 24 pages of Voice. At this time of year, much of our attention is on the new school year – new enrolments, new teachers, new classroom, new learning. Sometimes a new school, where relationships need to be forged anew. The content of this issue focuses on some aspects of educating students with Down syndrome.Learners with Down syndrome overviews what we know about the common impacts of Down syndrome on learning, and how that can inform strategies to support a student.The second feature article distills information, advice and thinking from two major sources, on the all important relationship between school and home.Our attention then turns to one of the most fundamental strengths amongst people with Down syndrome, their visual learning ability and memory. We examine some examples of how schools can harness those abilities to smooth the way for students with Down syndrome and their teachers, in and around the classroom and school environment.All of these “big three” ideas can be applied to supporting people with Down syndrome at any age, and across environments, whether they are formally labelled “education” or not.As we approach the celebration of World Down Syndrome Day on 21st March, we trust that you will be able to both use the information presented here, and to share it with those who support your son or daughter’s learning wherever it occurs

Jill O’ConnorManaging Editor

Next issue - staying healthyThe June 2010 issue of Voice will have a health focus. We expect to include feature articles on some of the health problems that are known to affect people with Down syndrome more often than others, and on monitoring health and wellness. Copy and advertising deadline is 5th April 2010

Resources with the following symbols are available for members to borrow from our libraries:

Down Syndrome Victoria !"VIC"

Down Syndrome NSW "!"NSW



Education

The only feature all individuals with Down syndrome have in common is some degree of intellectual disability. Everyone with Down syndrome will experience some delay in their development, and some level of learning disability.Most children with Down syndrome experience some delays in all areas of development, including:

• Gross and ne motor skills• Personal and social development• Language and speech development• Cognitive development

The extent of delays are not the same across all areas, and there are signi cant differences between individuals. The development of individuals with Down syndrome is in uenced by family, environment, cultural and social factors, in much the same way as for everyone else.Every learner with Down syndrome will demonstrate individual abilities, strengths and weaknesses and have their own learning characteristics. For this reason, while we can outline a range of characteristics associated with learners who have Down syndrome, this material should act only as background information when dealing with individual students. The temptation to generalise on the basis of the label ‘Down syndrome’ should be resisted.Learners with Down syndrome experience spurts in the acquisition of skills, and periods

of consolidation, just as all learners do. Since development progresses at a slower rate, the gap intellectually and developmentally between learners with Down syndrome and their peers tends to widen with time (just as the gap between two cars travelling at different speeds increases with distance). Learners with Down syndrome do not usually ‘catch up’ with their age peers.Contrary to what has been believed in the past, young people with Down syndrome do not stop or ‘plateau’ in their learning during teenage years, or indeed at any other time. If provided with the opportunity to do so, people with Down syndrome will continue to learn and make progress throughout their lives.Maintaining high expectations of both academic achievement and behaviour will help ensure a student has the opportunity to reach his or her full potential. Like all of us, people with Down syndrome tend to conform to the expectations of those around them, and if there is no expectation of success, they are unlikely to be successful.It is important too that teachers embrace an inclusive classroom culture and expect to meet the learning needs of the student with Down syndrome alongside those of other students in the class. A positive attitude to inclusion in a teacher is one of the most reliable predictors of successful inclusion and is more signi cant than either specialist training or extra resources.

Learners with Down syndromeThis article is an extract from Learners with Down syndrome, A handbook for teaching professionals. This handbook is based on the developmental pro le for learners with Down syndrome developed by Prof Sue Buckley and colleagues and has been compiled from the work of a number of well known specialist educators around the world.


Education


In general, learners with Down syndrome can be expected to:• adhere to the same

behavioural and social norms that are expected of their peers

• participate in all the same learning activities as their peers, with appropriate modi cation of the material and appropriate additional support

• take longer to learn new things and to complete work than other learners

• require learning to be broken into smaller units and scaffolded to a greater degree than is needed for other learners of their age group

• bene t from visual cues and reinforcement in all areas of learning

• bene t signi cantly from errorless learning techniques

• require explicit teaching of skills which others learners might assimilate informally

• require signi cantly more repetition and consolidation to retain new information

• understand considerably more than their verbal abilities might suggest

The speci c developmental pro le associated with Down syndromeA speci c pro le of developmental strengths and weaknesses has been developed in relation to children with Down syndrome, and is documented in detail in the work of Professor Sue Buckley and colleagues at Down Syndrome Education International [www.downsed.org]. This pro le provides a useful tool to assist with classroom planning and teaching strategies.

Sue Buckley & Ben Sacks (2001) An overview of the development of children with Down syndrome (5-11 years) Down Syndrome Issues and Information series !"VIC !"NSWSue Buckley & Ben Sacks (2002) An overview of the development of teenagers with Down syndrome (11-16 years) Down Syndrome Issues and Information series !"VIC !"NSW

• Social understanding and sensitivity and social interactive skills are relative strengths, (but may be hampered by less well developed language skills.) Students with Down syndrome enjoy interacting and learning with others.

• Speech and language development is often the area of most signi cant delay, and does not keep pace with abilities in non-verbal understanding and reasoning. Students with Down syndrome can usually understand considerably more than they can express verbally (use of signing and gesture to communicate is an area of strength). Speech intelligibility can also be an issue. A high incidence of hearing dif culties contributes to this.

• Working memory (short term or verbal memory) development is usually relatively poor. This directly affects learning spoken language, makes learning from listening dif cult and affects abilities in thinking, reasoning and problem solving.

• Visual memory and visual processing are relative strengths. Children with Down syndrome should generally be considered visual learners and will bene t signi cantly from visual reinforcement, visual cues and concrete materials wherever appropriate.

• Reading ability is often a strength from an early age (early decoding ability is common, probably due to reliance on visual memory skills). Reading skills can be used to support development and improvement of spoken language skills and improvement of working memory skills.

• Number is an area of relative dif culty (other areas of mathematics may present less dif culties). Teaching should incorporate maximum use of visual supports and concrete materials.

• Motor development is usually delayed and may delay progress in other academic and self-help skills, eg handwriting, physical education and sport activities, handling equipment.

• Social behaviour is a strength in young people with Down syndrome - if encouraged and expected to do so, young people with Down syndrome generally develop age-appropriate social behaviour.

The speci c developmental pro le associated with Down syndrome



Education

Learners with Down Syndrome, A handbook for teaching professionals (2009) Down Syndrome Victoria !"VIC"!"NSW

Learners with Down syndrome is available from Down Syndrome Victoria (RRP $9.90)

Ph. 1300 658 873 or [email protected]

www.downsyndromevictoria.org.au

Seome important issues to consider

Errorless learningChildren with Down syndrome learn best through success. Not only may they not learn from their mistakes, but instead, once a mistake has been made there may be a maddening tendency to repeat it. As far as possible, learning should be structured in small achievable steps and in such a way as to ensure that the student gets it right from the outset. Break tasks and learning down into simple chunks or steps, and provide appropriate scaffolding, so that the student can work independently and experience success in their learning.

Sensitivity to failure and disempowermentStudies suggest that children with Down syndrome often regress from being initially keen and active learners into progressively more reluctant learners, to the point of adopting a range of avoidance strategies. Low expectations by parents, teachers and peers, perceiving themselves as ‘different’ to others in the class or ‘not belonging’, constant assistance from others and feelings of powerlessness in their learning may all contribute to this.Many children with Down syndrome demonstrate sensitivity to failure. It is therefore critical to set the student tasks at which they can succeed - and to offer speci c ‘labelled’ praise whenever appropriate. Continual experiences of failure may lead to the student taking steps to avoid tasks in which they have not experienced success or situations they nd dif cult. For example, this might mean that a student routinely plays up (eg disappears under a table, or to the toilet) in order to avoid a lesson they nd tricky; or that a student seeks the company of teachers or other adults during recess breaks because this feels safer and more successful than interaction with their peers.Feelings of disempowerment can lead to the student attempting to assert themselves in inappropriate ways, such as deliberately ignoring instructions, procedures and rules. An important way to empower students is by offering choices wherever possible.

Learned helplessnessIt cannot be over-emphasised how important it is to maintain high expectations for the student and aim for the greatest possible level of independence in learning. If the student is always told what to do, or assisted in everything, they may come to rely on this. It then becomes dif cult to get them to initiate learning or take responsibility for their learning. Unless directly told what to do, they do nothing; or they do not attempt tasks, knowing that someone else will do it for them. This ‘learned helplessness’ is often seen in people with Down syndrome (of all ages) who have been over-assisted, and provides a real barrier to ongoing learning both in school and in later life.

A note on medical issues and dual disability diagnosesIf a student has an underlying medical condition or physical ailment it will have an impact on their learning.

Children with Down syndrome are more prone than the general population to a number of speci c medical conditions (eg thyroid conditions, heart conditions, sleep apnoea, coeliac disease) and some children are particularly prone to infections. In addition there is a greater incidence of hearing and vision issues in children with Down syndrome than in the general population. In a small number of children with Down syndrome, compounding conditions such as severe hearing loss or autism add complexity to the learning dif culties the student may experience.

Consult the family and obtain a clear understanding of any medical or health issue or compounding disability which may impact on the child’s learning.



Education

Working in positive partnership with your child’s school“Developing a positive partnership with your child’s school is the foundation of a successful school experience for your child and family.” Positive Education Planning, Association for Children with a Disability

The two essential ingredients of this partnership are developing a relationship in a way that works best for you and for the school, and developing good communication skills. As with any other relationship, a positive partnership with your school requires mutual respect, listening skills, empathy and communication.Parents sometimes feel that their input is overshadowed by the authority of the professionals they are dealing with. Remind yourself that your family has a recognised natural authority in the life of your child. You care more about your child than others, no matter how committed those others may be, you have a greater stake in the outcomes than anyone else except the child, you have a responsibility for the wellbeing of your child, and you are the expert on your own child. You are the expert because there are many things about your child that only you, as their parent, know: you spend the most time with your child, you see them in a whole range of situations, you know their strengths and weaknesses, their likes and dislikes. The teachers and other education professionals you work with bring their specialist expertise to the partnership. In order to achieve the best outcomes for the child, the input from the family and from the education professionals is equally relevant. This is why it is so important to build a good partnership with your chosen school. In her book Developing inclusive school communities, Fae Kennish describes ve strategies to help build an effective and productive partnership:

1. Establish yourselfBe visible and accessible by participating in school functions or activities whenever you can. Offering to help and being on site can often be an ice-breaker, and lets the teachers get to know you and you them. It is also a good informal way to observe and get a feel for what’s happening in the school. Try some of the following:• Walk your child to and from the classroom• Volunteer for work in the classroom or elsewhere

in the school

• Attend school council meetings• Volunteer to participate in school committees

or working groups• Attend working bees• Attend meetings regularly with your childMany parents are not able to spend much time in the school because of work or other commitments. And once in secondary school, the opportunities for direct involvement are usually considerably reduced. However, you can still show that you are approachable and available for consultation on behalf of your child:• Establish an email relationship with teachers

and other relevant staff members (keep your emails brief and focused)

• Phone or email the school to acknowledge progress your child makes

• Ask to be phoned if the need arises• Attend meetings and functions that are

outside your working or committed hours

2. Become a resourceIdeally you want the teachers to feel that they can call on you for input should something come up that they are unsure of. You need to be able to give this input in a supportive manner and without undermining the teacher’s professional role.• Be open and honest and give them

information when it is asked for.• Offer advice and suggestions in response to

issues that are raised - do not tell the teacher how to do their job.

• Ask if they would like to try any resources or materials you may have used at home or are familiar with .

• Be prepared to seek out resources, materials and information that may be helpful and pass these on.

Consider what you know about the ways in which your child learns. Information about your child’s strengths, learning preferences and interests can



Education

provide the teaching staff with valuable reference points. You will often be faced with new teachers who have not had contact with your child before. Be prepared for the fact that you may have to start from scratch and tell the same thing to teachers year after year. It may be useful to offer a printed introductory pro le of your child. One example can be found in Education support pack for mainstream schools produced by the UK Down’s Syndrome Association which is available to download atwww.downs-syndrome.org.uk/resources/publications/education.html (p 83). In this example, the past year’s teacher has also added some brief comments by way of hand-over to an incoming teacher.

3. Establish communicationMethods of communication between yourself and the class teachers, support personnel and the principal need to be well de ned. Make sure that the method of communication chosen for the particular partnership is agreed on by both of you. By showing the school that you wish to keep an open communication channel you also indicate that you wish to play an active role in your child’s education. Try some of these:• A communication book – this is a diary or

notebook which travels between school and home in your child’s bag. The school can note events, excursions, important information about class activities and notes about speci c issues or achievements; parents can relay information from home which may impact on the child at school, such as late nights, family events, new areas of independence etc

• Phone calls/phone messages• Informal face-to-face meetings before or after

school as needed• Regular meetings• Notes on homework sheets• Regular or as needed email contact

“The teacher and I have agreed to meet for a few minutes each Wednesday afternoon… It has been great because what was once an uncomfortable few minutes each afternoon is now a productive ten minutes once a week. We still talk if something comes up on one of the other afternoons that has to be spoken about there and then, otherwise it’s put in the communication book.”

Effective communication skills play a crucial role in your partnership with your chosen school. You may need to learn and practice them – but once mastered you are likely to nd them useful in other areas of your life too:

Be assertive. Avoid being either meek or aggressive – being assertive implies saying what you want to in a con dent and direct way. Use “I” statements to help you state honestly and directly how you feel without attributing blame.

Compare:“Why isn’t Alicia being included in the morning session? All the other children are in this!” (aggressive)“I’m nding it hard to understand why Alicia is not currently participating in the morning session. Could we please discuss this.” (assertive)

Focus on the issue itself and its resolution. Don’t water down what you want to say to avoid con ict but try to express it calmly and in a non-emotive way. State clearly and speci cally what you want and don’t get sidetracked into other concerns.Include positives. People usually pay more attention to what you want if they can see that you have considered it carefully and are appreciative of efforts made. Don’t give up without understanding. Take your time and pursue answers until you are clear. If you don’t understand, say so: “I don’t really understand what you mean by … “ or “Could you explain … to me”. Use open questions. These start with question words such as what, why, how or ask a generalised question, such as “could you tell me more about …” Closed questions, such as those starting with is, are, have, do, does invite the answer ‘yes’ or ‘no’ which may end the interaction.

Compare:“Does Evan do the same maths activities as the other children?” “Yes, usually.”“Could you brie y ll me in on how you organise the maths lessons and how Evan ts in with this?”

If you do begin with a closed question, you can always follow up with an open question asking for more information or clari cation.

4. Become informedYou can communicate much more freely and have a much better chance of an effective partnership with the school and teachers if you share some common knowledge, or if you yourself have knowledge to share that can bene t those involved.To forge a productive relationship with school staff it is bene cial to familiarise yourself with the basics of both the system and the particular school that your child attends. Doing so can help you feel much more con dent about understanding the general running of the school, and a much better



Education

understanding of how things may be handled with respect to your child. Use your knowledge constructively – not as a tool to attack the school for not doing something. By showing interest in the school you also send a positive message about your involvement and commitment to the school staff.• Attend meetings relevant to school

management and administration• Volunteer for school councils and committees• Attend seminars given for parents at school or

other educational venues• Work in the tuck shop or canteen!• Read policy documents available via the

school, such as the school’s development plan, behaviour management plan, social justice policy etc.

“I have very strong ideas about what I want for my daughter. Five years ago I would threaten, yell, scream, do anything to get what I wanted. It didn’t work. So I decided if I wanted ‘them’ to listen I needed to know as much as they did about the system, so I could argue as an equal. I became a member of the P&C. I nominated for school council and was elected. I went to conferences put on by the Education Department. I also kept a high pro le around the learning support staff, praising for strategies well thought out, asking if there are any glaring problems and offering my opinion on solutions.”

Another method of gaining more con dence and being able to work more effectively as a partner in your child’s education is to become aware of strategies you use at home to help your child to learn. Often as parents we don’t stop to consider the strategies that we have developed over the years which work. We just do it. Yet this is useful knowledge that you can offer to help nd solutions to issues that may come up at school. Consider the strategies and techniques that you use to help your child and pass these on as suggestions to your child’s teachers. Avoid presenting the teacher with a list of tactics, instead choose one or two that you feel are really important and introduce others as and when appropriate:

“I just noticed Matt stabbing his pencil into the page and getting really tensed up. He used to do that a lot at home. After a while he would get really angry and then lash out. I used to get angry with him until I nally worked out what it was. It only ever happened when he was closed in by his brothers and sisters at the table… Perhaps if he could sit on the end of a row that doesn’t have anyone behind it instead

of in the middle, that could make him feel less con ned. Anyway, I thought I’d mention it because it might save a lot of hassle and stop possible problems before they start.”

In this example, the parent uses “I” sentences and the information is presented as a suggestion and backed up with the information gathered from home.

5. Be happy with progress and maintain a positive attitudeNo matter what skills and knowledge you have, you are functioning in the wide arena of the school community – a school community that has a certain philosophy, functions within a particular educational climate and is dealing with a range of issues. You – and the school – can only do so much, and things are unlikely to ever be exactly as you would want them to be. Do the best you can and be content with the outcomes. Remember too that your attitude, both in relation to your child’s disability and to their school progress, will have an impact on that of the school staff with whom you work. Maintaining a positive outlook and open-ended expectations will help your child’s teachers to do the same.

Adapted with permission from Fae Kennish, Developing inclusive school communities – strategies for parents CRU Publications, 1997 and Association for Children with a Disability, Positive Education Planning, 2009

ReferencesFae Kennish, Developing inclusive school communities – strategies for parents (1997, Community Resource Unit, Qld) !"VIC"

Association for Children with a Disability, Positive education planning. Supporting children with a disability in Victorian government primary schools (2009, ACD) !"VIC"!"NSW

UK Down’s Syndrome Education Consortium Education support pack for schools – mainstream primary and secondary (2002, UK Down’s Syndrome Association) Available at www.downs-syndrome.org.uk/resources/publications/education.html

Michael Kendrick, The natural authority of families CRUcial Times issue 6 July 1996



Education

The information in this article is adapted from a resource developed for families in Victoria

If you have a signi cant concern about something at school it is best to address it. Sometimes people avoid raising issues that they think might cause con ict, but this may lead to increased anxiety and tension in your relationship with the school. A good parent-school partnership should allow you to feel comfortable with addressing issues. Don’t always expect con ict. Others may agree with you. Schools usually value concerns being raised early so that they have an opportunity to address the issue and stop it from getting worse. Use the following tips for raising a concern:Get all the facts – writing things down can help clarify what the issue is and whether your concern relates to a particular issue or incident, an aspect of your child’s program, the staff or personnel or a combination of these. Stick to the facts that you know about the situation and avoid jumping to conclusions or attributing fault. Be clear about the outcome you are seeking. Think about what you will say and how you will say it. Write notes if this helps.Concerns about an issue or incident at school are best addressed by speaking to the teacher in the rst instance. Concerns about your child’s program are best addressed by the Student Support Group (or its equivalent). This is a group of people with a range of expertise in relation to your child, and usually including you as parent, nominated to meet regularly and help plan and guide your child’s school experience. Concerns about teaching staff or school personnel should be directed to the principal. When discussing your concern with a teacher, focus on moving towards positive change. Try to be realistic about what, when and how changes can be made. Agree on a time frame to trial changes and then review what worked and what could be improved. Organise an appropriate time and place to discuss the issue – avoid having the discussion in public places such as school corridors and, if necessary, ask to move the discussion to a more private place. If the situation continues request a Student Support Group meeting to look at other ways to resolve the issue.It can be useful to keep your own record of all discussions, including a reference to the concern and the action taken. Use the communication book or keep a separate record. Include suggestions you make to the school, resources you offer, loan or give the school, contacts you

supply, requests you make, brief details of phone calls you have with the school, brief notes of conversations and informal meetings you have. It can be bene cial to have a clear record of your communication both for clari cation purposes and also to assist you in the event of misunderstandings or grievances.Put serious concerns in writing to the principal. Again remember to distinguish what you know about the situation from your interpretation and opinions about it. Let the principal know that you would like to work through the issue together and ask for a response within a reasonable time frame.Find out if there are any policies or guidelines which relate to your concern. Ask the school for a copy of their grievance or complaints policy. If the matter remains unresolved or you need to take it further you will need to take your concern outside the school to the appropriate authority. More information on how to do this can be found at: Victorian public schools: www.education.vic.gov.au/about/contact/complaints.htmNSW public schools: www.det.nsw.edu.au/contactus/index.htm#complaints

Adapted, with permission, from Positive education planning Supporting children with a disability in Victorian government primary schools (2009) Association for Children with a Disability. Copies of this publication are available (free of charge to families in Victoria) from the Association of Children with a Disability. The entire publication is available at www.acd.org.au/information/education_planning.htm

When you need to raise a concern



Education

Using visual tools to support classroom communication and learningHelen Wheatley

When a child starts school the demands upon their speech and language skills increase greatly. They must now apply these skills to understand instructions, sort through information and to interact socially. Most children with Down syndrome have some level of speech and language dif culty which make being in the classroom or the playground a challenging experience. Using real objects or visual symbols, that is photos or pictures, assists the child to cope with the increasingly complicated process of trying to communicate effectively and integrate into the school environment.

Visual supports and spoken communicationVisual supports can assist both a child who is struggling to understand speech and language and also the adults interacting with the child. The bene ts of visual supports include:• Providing more usable information. The child

can see the message as well as hearing it.• Compensating for dif culties with short term

auditory memory (also called working memory) associated with Down syndrome by utilising the stronger visual memory. Although most children with Down syndrome have a good memory for the things they have seen (visual memory) or experienced (episodic memory) their ability to hold a spoken message in working memory is often impaired. This means they have trouble remembering all the words in a sentence and struggle to make sense of what they have heard. For further information about short-term auditory memory see Sandy Alton’s article and the Down Syndrome Education International publication, referenced below.

• Providing static information. Verbal messages disappear as soon as the words are spoken. Using a visual symbol means part of the message remains for longer. The child then has time to process what was said (this is sometimes referred to as a ‘delay time’).

• Providing concrete information. Words are abstract. Visual supports provide concrete information and help give meaning to the words.

• Providing a link between the knowledge the child has about the world and the words they are hearing.

• Simplifying the message by breaking it into manageable units. The child is prompted to concentrate on the important parts of the message.

• Creating a link between the verbal information and the visual information that the child receives. With repetition their understanding of the spoken message increases.

• Providing a link between known words and unfamiliar words increasing the child’s receptive vocabulary (eg shut the door/close the door).

• Making the speaker aware of the message they are delivering.



EducationDeveloping visual resourcesTo develop visual resources you need to obtain suitable images, decide on a means to protect the visual symbol materials (from everyday wear and tear), and decide how the materials will be presented for use. Obtaining suitable visual imagesImages and pictures to create visual symbols can be obtained from various sources:• Commercial pictograph software programs -

There are software programs which contain a library of pictures/images/symbols which can be printed and laminated to create visual tools. Some programs allow the user to manipulate the images to create new or unique visual symbols as they are needed. A commonly used example is Boardmaker.

• Downloadable visual images – There are many web-based sources of images, available free of charge. Google Images can be a good source; others are listed at the end of this article. The visual symbols used in this article are available free of charge from the Visual Aids for Learning website.

• Self-created images - Visual tools can be created using photos, pictures from magazines, images from the internet or hand drawn pictures. It is important to ensure that the focus of the image is the object the visual symbol is to represent eg if the visual is to indicate grandma, only grandma should be in the picture and preferably a head and shoulder shot only. The background should be plain. ‘Busy’ images may cause distraction and confusion. Invest in a digital camera and a laminator (or a roll of transparent self-adhesive plastic. This allows the visual tools to be personalised. Photos of the child or their personal belongings can be incorporated into the resource. The camera is invaluable when compiling social scripts (personalised stories for a particular situation or event).

Visual supports in the classroomFor a child with Down syndrome the use of visual supports in the classroom facilitates their inclusion and fosters their independence and self esteem. Using visual supports:• Helps the child get organised to listen.

Successful communication involves using many social communication skills, such as attending to the person who is speaking, making eye contact and holding still while someone is talking. Using a visual provides the child with a focus and lets them know that a message is coming and they should listen.

• Helps the child to predict what will happen next. When children cannot predict what is going to happen they may make mistakes, become bored or become non-compliant – all of which may be expressed as inappropriate behaviour.

• Builds independence during classroom activities. The child can use the visual sequences to follow classroom routines and complete activities with minimal prompting from adults.

• Provide consistency of meaning when a range of different terms are used for a single concept, eg subtraction may be referred to as ‘take away’, ‘minus’, ‘less than’ or ‘3 from 8’. The use of the visual symbol which depicts the concept provides consistency for the child regardless of the term that is used.

Introducing visual supports When introducing visual supports for the rst time, consider these points:• Does everyone understand why the visual

supports are being used? A meeting with parents, teachers and teaching assistants can help everyone to understand, value and use the system.

• Is the type of visual support to be used suitable for the particular child? In general, photos or pictures will be used to create the visual symbols, but some children need real objects to be used in the initial stage.

• The child may need time to adjust to the new system. This is because it is new, not because it is not working. Allow time and start with just a few visual tools. Use them consistently in the classroom, the playground and at home.

• The initial visual tools used need to be motivating for the child. Start with an activity that the child wants to do (eg computer time) rather than a task you want them to do (eg toilet time).

Helen’s detailed instructions for the preparation, protection and storage of visual tools for school use are available from the DS NSW website: www.dsansw.org.au/downloads/Making_visual_tools.pdfor phone or email DSV or DS NSW for a copy to be mailed out.



EducationSome practical examples of visual tools for school use 1. Lanyards and key rings Lanyards and key rings provide a convenient way for a teacher or child to carry a group of visual images which are needed frequently or needed outside the classroom.• Select the visual images needed for a

particular situation or activity. • Punch a hole in the top left corner of each

card and place on a key ring.• Attach the key ring to a lanyard

2. Finished box or envelopeThis can help children to focus on the task or activity to be completed and to understand the steps or sequence in an activity. The child removes the visual symbol from the backing board and places it in a ’Finished’ box or envelope when they have completed a step or activity.

3. Classroom routine cards on a key ring A set of cards can be used to support the child to remember and adhere to classroom routines.• Break the routine into steps and choose the

appropriate visual symbols eg ‘pack away’; ‘sit on the mat’; ‘sit quietly’.

• Create a sequence of the visual symbols on laminated card .

• Punch a hole in the top left corner of each sequence and attach to a key ring.

4. Desk set A desk set is four or ve images which the child will use to support classroom participation throughout the day, eg a ‘my turn’ card, a ‘help’ card and a ‘ nished’ card. These visual symbols may be attached to a small backing board xed to the child’s desk. The child is encouraged to hold up the cards rather than leaving their seat or calling out when they need attention.

5. Individual visual timetables Time tables show the school routine and allow the child to predict what will happen in their day. A template for creating your own visual timetable can be downloaded from the Down’s Syndrome Association (UK) at www.supportdisc.co.uk/Visual_timetable.htm You can also create your own simple timetable: Draw a 2-column grid on a backing board. The left-hand column of the grid divides the day into sessions, eg morning, recess, mid-morning, lunch, afternoon. Visual symbols indicating the day’s activities are placed in the right-hand column.

6. Classroom instructionsEncourage the child to listen to a whole class instruction and use a visual symbol sequence to reinforce this• Choose the visual symbols that break the

activity into steps and create a sequence. • While holding the visual sequence give the

instruction to the whole class.• Point to each visual symbol to indicate each

step in the sequence.• Leave the visual sequence on the child’s

desk to provide a visual reminder of the instructions.

• Occasionally return to the child’s desk and ask the child to indicate where they are up to in the sequence.

• Completed steps can be removed from the sequence and placed in the ‘Finished’ box.



Education

7. Do this-then-this sequenceThis two part sequence assists the child to complete a less favoured activity in order to be able to do a preferred activity.• Make a small backing board with an arrow in

the centre and a Velcro dot on either side of the arrow.

• The visual symbol for the less favoured activity is placed on the left hand dot and the visual symbol for the preferred activity is on the right hand dot.

• Use the sequence to remind and prompt the child to complete the rst activity before they move onto the second activity.

8. Visual cue cards for transitions Children with Down syndrome sometimes have dif culties transitioning from one activity to another. This may be because they are enjoying an activity, because they have not nished their work, or because they are uncertain as to what will happen next. Using a visual cue card to pre-warn the child that a transition is about to occur gives the child time to nish (mentally and physically) what they are doing and to anticipate the next activity. • There are three visual symbols in this sequence,

one indicating the current activity, a nished symbol and a visual symbol for the next activity.

• Use the visual cue card to alert the child that a transition is soon to occur.

• The child is given a few minutes to conclude the current activity.

• When prompted, the child removes the visual symbol for the rst activity and places it in the ‘Finished’ box, then moves to the next activity.

9. Coping with unexpected events and cancellations Some children with Down syndrome may not nd it easy to cope with changes to their daily program or the occurrence of unexpected events such as their teacher being away. Incorporating a ‘change’ or ‘surprise’ visual symbol into the child’s program on a regular basis helps build their ability to tolerate change. You can then place a ‘change’ visual symbol over the activity which has been altered eg place the wet weather visual over the sport visual on the child’s individual timetable.

Visual tools can support communication and learning in many different ways in the classroom and at home. Wherever possible a visual component should be built into all learning – both for children and adults with Down syndrome. For more ideas and suggestions about how to do this, a list of further reading is included below.



Further reading

Sandy Alton, 2006 Short-term auditory memory Information sheet, DSA UK Education Consortiumwww.downs-syndrome.org.uk/resources/publications/education.html

Sue Buckley and Gillian Bird, 2001 Memory development for individuals with Down syndrome – an overview, Down Syndrome Education International. Available at www.down-syndrome.org/information/memory/overview/

Patti McVay, Heidi Wilson and Luci Chiotti , 2003 “I see what you mean!” Part 1, Using visual supports to support student learning. Disability Solutions, volume 5, issue 4

Patti McVay, Heidi Wilson and Luci Chiotti, 2003, “I see what you mean!” Part 2, Examples of visual tools to promote inclusive learning. Disability Solutions volume 5, issue 5 Both articles are available at:www.disabilitysolutions.org

Linda A Hodgson, 1995, Visual strategies for improving communication: Practical supports for school and home, Quirke Roberts Publishing, Available as a book or as a set of DVDs. !"VIC"!"NSWwww.usevisualstrategies.com/index.html

Kimberley Voss, 2005, Teaching by design, Woodbine House. Lots of practical ideas for using your computer to make visual learning materials.!"VIC"!"NSW

Dolly Bhargava, Getting started! Using visual systems to promote communication Reinforces many of the ideas in this article with lots of helpful illustrations and a very good accompanying short DVD showing how to use the visual symbols. !"VIC"!"NSWBoth the publication and the DVD are available at www.carsonst.wa.edu.au

Resources:

Visual Aids for Learning – image sets developed by the parents of a young child with Down syndrome, provide visual symbols suitable for use in the classroom and to support many everyday activities. The sequence packs provide a comprehensive series of visual tools which support particular situations such as toileting, class routines, getting a hair cut and menstruation routines. Images are available for free download from:www.visualaidsforlearning.com

BoardMaker - picture communication symbols (PCS) database. Widely used picture symbols. www.mayer-johnson.com

Integrated Treatment Services Includes many picture symbols and suggestions for their use, available to download at:www.integratedtreatments.co.uk/resources

Colourful Semantics – a systematic visual strategy, developed by Alison Bryan in the UK, to support language development using colour coding for parts of the sentence. An overview of this tool is available at www.integratedtreatments.co.uk/resources/category/15/colourful-semantics

Helen Wheatley is the mother of a large family that includes Michael, 22, who has Down syndrome. Helen has recently retired from her career as a speech and language pathologist, working with children and adults with Down syndrome and other conditions associated with language and hearing impairment. She lives in Newcastle, NSW.



Education

DSA-documents/Publications/education/including_pupils_secondary.pdf

Carol Johnson, Teaching Students with Down Syndrome, Canadian Down Syndrome Society. A very useful 4 page summary of some of the factors to consider for your students with Down syndrome to be successful learners. Available at:www.cdss.ca/images/pdf/parent_information/teaching_students_with_down_syndrome.pdf

Curriculum matters, Down Syndrome Association of Queensland. A presentation, introducing the emerging concept of universal design, making curriculum accessible by all learners:http://dsaq.org.au/content/Document/curriculum%20matters.pdf

Down Syndrome Vision Research Unit, Cardiff University (Wales) - very useful advice for classroom and playground.www.cf.ac.uk/optom/eyeclinic/downssyndromegroup/downssyndromemain.html

Dave Hingsburger, 2006, The “Are” Word, Diverse City Press - an eye-opening booklet on dealing with teasing, bullying and discrimination. Practical strategies for carers responding to the bully’s victim. A very good resource in a very small package. Available from: www.diverse-city.com!"VIC"!"NSW

Positive behaviour support: see www.beachcenter.org/pbs/default.aspx

Tried and proven strategies for dealing with challenging behaviour issues. Positive behaviour support principles are summarised in Dealing with challenging behaviour using positive behaviour support available at

www.dsav.asn.au/Sharon/Positive%20behaviour%20support.pdf

There are comprehensive reference lists on speci c education topics and speci c areas of the curriculum available on the websites of Down Syndrome NSW and Down Syndrome Victoria.

Down Syndrome Education International - maintains the most comprehensive website available worldwide, with open (free) access to all of their publications, a web seminar program, details of DSEI international training events and an online store. The DVD Inclusion in Practice is both popular and highly regarded.www.downsed.org

Down Syndrome: Issues and Information Packages, Down Syndrome Education International – available both in print and online (open access). The introductory publication, Living with Down Syndrome, provides an excellent introduction to Down syndrome for parents and professionals.!"VIC"!"NSW

www.down-syndrome.org

Learners with Down Syndrome A handbook for teaching professionals Down Syndrome Victoria 2009 (see pp 4 -6)Provides a comprehensive introduction for teachers who have students with Down syndrome in their classes.!"VIC"!"NSW

Education support pack for school – mainstream primary and secondary (2009) UK Down’s Syndrome Education ConsortiumAlthough UK based, this is a very useful compendium of information, advice and strategies. It is available online at: www.downs-syndrome.org.uk/resources/publications/education.html together with a range of other resources about education

Alton, Sandy (2008) Including pupils with Down’s syndrome. Information for teachers and learning support assistants (primary) Down’s Syndrome Association & Down’s Syndrome Scotland: www.downs-syndrome.org.uk/images/stories/DSA-documents/Publications/education/including_pupils_primary.pdf

Alton, Sandy (2000) Including pupils with Down’s syndrome. Information for teachers and learning support assistants (secondary) Down’s Syndrome Association & Down’s Syndrome Scotland: www.downs-syndrome.org.uk/images/stories/

Key resources on education



Noticeboard

Launch of national book project: call for submissionsSubmissions are being sought from parents (both mums and dads) who have a child with Down syndrome and who are keen to write about their experiences: of how they dealt with their child’s diagnosis; of what they thought life would be like with their child and how, in reality, it has turned out to be; and the gifts (for instance, acceptance, respect, love, courage and delight) that child has brought into their lives.

The submissions will be compiled into a national book, with the working title Now I See. The book is aimed at raising awareness (and challenging outdated ideas) about life in Australia today for children with Down syndrome and their parents. All submissions will be considered.

More information: www.nowisee.com.au

A discreet strap for glasses The InconSPECuous glasses retainer has been recommended to us by a member whose 5 year old wears glasses, kept in place by this simple device, described as “a strap for glasses that you don’t notice”.

The website includes description, instructions for use and a link to a You Tube video demonstration. The company is based in South Australia.

www.inconspecuous.com.au

If you are planning to be in the USA later this year, you might be interested in the National Down Syndrome Congress annual convention scheduled to be held in Florida:

2010 NDSC Annual ConventionJuly 16 – 18, 2010Walt Disney World, FLDisney’s Coronado Springs ResortDetails are now available at the NDSC website: www.ndsccenter.org

The Specials - on the web and on DVDThe Specials is a British internet documentary series following the lives of 5 friends with learning disabilities (some of them with Down syndrome) who live together in a house in Brighton. It is webcast in weekly 10 minute episodes with the housemates providing the voiceover, so the viewer is very much seeing the world through their eyes.

An interview with the director, Kathy Lock, posted on the blog, WheelchairPride in January, giving some insights into how the documentary came about, and where it might go,

……. let me assure you The Specials is not ction! The guys are not actors but are real people who allowed me to enter their home and follow them with my handheld camera. I lmed them over a 6 month period and during that time I saw them have a lot of fun but also go through some very dif cult emotional situations e.g. break ups, parental divorce. Over that time we built up a lot of trust and so, hopefully, you can see they trusted me enough to be really open. (Kathy Lock)

Season 1 of The Specials is expected to be released on DVD in March, and can be purchased from the website. To see the 10 episodes of The Specials:

www.the-specials.com

To read the interview with Kathy Lock:

www.wheelchairpride.com/2010/01/special-tv-series-that-is-must-see_12.html

Noticeboard



My Voice Compiled by Stephanie Papaleo

My Voice

HAPPY NEW YEAR EVERYONE AND WELCOME TO NSW READERS!!!!

I hope you all had a wonderful Christmas, and I hope you all have a fun and exciting New Year.

My name is Stephanie Papaleo. I have been working at Down Syndrome Victoria for 10 years as Administration Assistant, and also I am really interested in the Voice magazine.

I would like to introduce to you a section in our magazine called ‘My Voice’. It’s about sending some photos of yourselves together with your families with a little story about the photo and all the things you have been doing and all the wonderful achievements you have successfully completed.

You are more than welcome to contact me at our of ce, the of ce phone number is 9486 9600 or email me at [email protected]

Thank you

Stephanie My Voice Editor

Emily Collins’s parents, John and Kathleen were very surprised that the very rst time she went ten pin bowling, she knew exactly what to do!

Marcel Reyes is a 26 year old living in Melbourne - he is a fantastic uncle to his niece Charlie. We are very proud of him!

regards from Elizabeth Reyes



Reserved for My Voice

My Voice

My 16 year old brother, James recently graduated year 10 achieving both his year 10 School Certi cate and an Award for Best Dancer of his year. This photo is from the night of his Year 10 Formal. My dad and my family and I are extremely proud of all of James’s achievements and look forward to being a part of James’s future endeavours.

Katherine Wolfe

This is George Kempton at his Year 12 Valedictory Dinner in November 2009, at the completion of his secondary schooling at Emmanuel College in Warrnambool. George has attended Emmanuel College since Year 7 in 2004 . He thoroughly enjoyed his experience as a student at the College or as he says, “ he liked it”. He appreciated the visits on a regular basis from Ian Cook to guide him (and his parents) through his education. In 2010, George will be doing a range of activities, including continuing his education at South West College of TAFE.

I am very proud to play basketball for Victoria in the Special Olympics National Games in Adelaide in April, 2010. I can defend and shoot 3 pointers. I am running with the torch in Melbourne on the 9th April.

Thank you to everyone who has sponsored me so far. It is great.

Keziah Glenane



World Down Syndrome CongressAbstracts from the 10th World Down Syndrome Congress now onlineDown Syndrome Ireland hosted the 10th World Down Syndrome Congress in Dublin in August 2009, and has now published the Abstracts of the Congress papers online:

www.downsyndrome.ie/index.php/information-centre/research

The full proceedings will be published in print in time.

Down Syndrome South Africa has won the bid to host the 11th World Down Syndrome Congress in Cape Town in August, 2012.

Visit this web page for further details as they are posted:

www.downsyndrome.org.za

Research

New brain research from Stanford UniversityNew research on particular brain functions in mouse models of Down syndrome was released by the Down Syndrome Research Center at the Stanford University School of Medicine, in California in November 2009.

Among the several different brain centres involved in complex learning and memory functions, the study examined the in uence of one neurotransmitter (signaling chemical) on a particular type of receptor cell that was found to be damaged in the mice brains, and the type of learning that was affected. When the neurotransmitter was replaced, contextual learning improved, even though the cells remained damaged.

The work builds on earlier studies, and the researchers caution that it is a long way from a clinical application, and is not a “cure” for Down syndrome:

This study has revealed another potential therapeutic strategy to improve learning in a mouse model of Down syndrome. ..... these ndings are very promising. However, we would like to emphasize that these studies were done in a mouse model and more work is required before commencing clinical trials in humans.

(http://dsresearch.stanford.edu/community/)

A possible clinical application, which is still not able to even be trialled in humans, may be in the treatment of dementia in older people with Down syndrome.

“It’s a very positive development,” says Roger Reeves, a geneticist at Johns Hopkins University in Baltimore, Maryland. He notes that other recent rodent studies have suggested that drugs that target the neurotransmitter GABA, among others, may also help improve cognition in Down syndrome. Although some researchers have begun to test such cognitive-enhancing drugs in people with Down syndrome, Reeves says the studies to date have been small and fraught with methodological problems, so he doesn’t consider them to be reliable. Even so, he says, “5 years ago I never would have believed we would be looking at this kind of fundamental therapy for Down syndrome.”

Science Now, 18th Nov, 2009

The publication of this research has reignited an ongoing debate about the potential for curing Down syndrome, and the implications of such a possibility. Michael Bérubé has commented that

....the discourse of the cure is everywhere, and the discourse of reasonable accommodation,

so far as I can see, is understood only by those people who already know something about disability ....

and

We’re talking about the potential for the mitigation of some aspects of Down syndrome. Not a “cure.” …… And mitigation can take many forms - including reasonable accommodation! ……. when you make it easier for people with disabilities to get around in society, whether they have mobility impairments or intellectual disabilities, you are mitigating the effects of their disabilities.

The Stanford research is important, and exciting, but there are many steps between laboratory studies in mouse models, and the translation of the results into safe, effective and ethical therapeutic treatments for humans.

Reference:Salehi, A. et al, Restoration of Norepinephrine-Modulated Contextual Memory in a Mouse Model of Down Syndrome, Science Translational Medicine, 2009: Vol. 1, Issue 7, pp. 7 – 17

Michael Bérubé is an academic and father of Jamie, who has Down syndrome. He writes for the blog Crooked Timber. His comments are extracted from his 14th January 2010 post , entitled Mighty Moloch, cure me of my severe allergy to the discourse of the “cure” at: http://crookedtimber.org



Education

World Down Syndrome Day will be celebrated with events around Australia on 21st March.We wish people with Down syndrome, their families, friends and communities well for their celebrations, and invite you to send in your stories and photos.

Disability Investment Group report released – feasibility study commissioned

The campaign for a National Disability Insurance Scheme is gathering momentum.On 3rd December 2009, the Australian Government released the Disability Investment Group’s report commissioned as part of its commitment to set out a ten year agenda for coordinated, across-government action for Australians with disability.The report, The way forward: a new disability policy framework for Australia, is an important contribution to the Australian Government’s National Disability Strategy. With the number of people with a severe or profound disability predicted to rise to 2.3 million by 2030, the Government says it recognises the need to look at how people with disability can be supported over the long term.The Government has commissioned the Productivity Commission to undertake a comprehensive feasibility study into a national disability insurance scheme. The Productivity Commission will investigate the feasibility of new approaches, including a social insurance model, for funding and delivering long-term disability care and support for people with severe or profound disabilities however they are acquired. This will include detailed modelling and analysis to determine if a long-term disability care and support scheme would be appropriate, practical, economically responsible and whether it would t with Australia’s health, aged care, income support and injury insurance systems.The Disability Investment Group was established last year to provide advice on ways to explore funding ideas from the private sector to help people with disabilities and their families access greater support and plan for the future. The report also makes recommendations on employment, housing and research. The report and membership of the Disability Investment Group can be found in the document The way forward: a new disability policy framework for Australia.It can be accessed online at: www.fahcsia.gov.au/sa/disability/pubs/policy/way_forward/Pages/default.aspxPrint, Braille or audio copies can be requested on 1800 050 009Links to the report and media responses are available on DS NSW blog, Keeping Up with Down Syndrome NSW: http://keepingupwithds.blogspot.com/2009/12/disability-investment-group-report.html

Inquiry into the migration treatment of disabilityThe Australian Parliament’s Joint Standing Committee inquiry into the migration experiences of people with a disability is continuing. Ninety written submission have been received, and are available online, as are the transcripts of public hearings that are expected to be completed during February. The Committee’s report is expected to be tabled in Parliament during April, and the Government and Opposition responses could be expected before the federal election.The inquiry website is:www.aph.gov.au/house/committee/mig/disability/index.htm

Self directed fundingA national movement in support of self-directed funding support for people with disabilities is emerging in Australia. In Control Australia held a forum at NSW Parliament House in November 2009, with speakers from Victoria (where implementation of the principles is much further advanced than in NSW) and from NSW. The presentations from the forum are now available online at the Family Advocacy website: www.family-advocacy.com

News



Reviews

Gifts 2 – How people with Down syndrome enrich the worldby Kathryn Lynard Soper (ed), Woodbine House, 2009

reviewed by Shelley Phillips

It seems appropriate as I plan for Christmas that my copy of Gifts 2 - How people with Down syndrome enrich the world arrived yesterday - and I dived right in. It is a little repetitive - which just highlights to me that even though no story is identical, the discoveries we make of ourselves, our world and our children are all very similar. I love the stories I have read so far, and it will take its place on my growing shelf books related to disability Down syndrome so that I can dip into it regularly.

My favourite story so far is ‘The missing piece’ by Beth Duncan - the photo that accompanies it and the opening paragraph - re ect my daughter exactly. She holds my face either side with her hands tight, looks totally focussed into my eyes and says loudly and clearly and sometimes repeatedly, with intensity and love “Mummy”. I love it. Those moments are so precious to me.

I smiled as I read ‘Mulch’ by Julia Pewitt Kinder - oh yes, I recognised that doctor and the child who didn’t t the medical box - a ‘healthy’ child with Down syndrome?.

I recognised the new shoes of Amy Armstrong in ‘This walker doesn’t match my drapes -yes I wear a pair of those new soft shoes! And the love in ‘Angelico’ brought tears to my eyes. My Dad feels that way, I am sure, about Hannah. She brings him peace and helps him, like nobody else can, as he adjusts to life as a ‘widower’

The stories by siblings and friends - I think of my own Kit as I read each one. One day he will tell his story about his twin sister who happens to have Down syndrome. I am sure it will be a remarkable story re ecting their remarkable and unique relationship.

Jennifer Marie Seiger says “We are raising awareness. We are on the path of acceptance. We are passing it on.” It is a gift. A most wonderful gift. That gift is almost as good as the other great gift of children like Hannah and Emily. As Beth Duncan writes, “I’m glad that Emily came into my life because, among other reasons, she is gradually showing me who I am.” I agree wholeheartedly. Can’t wait to keep reading!

Shelley Phillips is the mother of 5 yr old twins Hannah and Kit. Hannah has Down syndrome. A dedicated reader, Shelley works as a secondary teacher, and lives with her family in Sydney.

Gifts and Gifts 2: !"VIC"!"NSW

Dance like nobody’s watching, DVD, directed by Elizabeth Collins (2009)

reviewed by Diane Tymms

Good documentaries can elicit emotion, debate and discussion amongst viewers. Great documentaries can educe the full gamut of human emotions and provoke the viewer to analyse their own opinions and ideals. Dance like nobody’s watching is one of those great documentaries, where from the moment the charismatic star of the lm, Paul Matley, introduces himself and the story to follow, you are immediately captivated.

Dance like nobody’s watching is a documentary that allows the viewer direct access to Paul Matley, a young man with Down syndrome, who, along with his family candidly discusses his life, from childhood, his school years through to adulthood. All of the triumphs, heartbreaks, joy, anger, pride, personal aspirations and fears of this journey are laid out for all to hear and feel. The director, Elizabeth Collins did a fabulous job in casting Paul to be the main subject. Paul is a handsome, articulate, good-humoured and immediately likeable lead. Most importantly Paul is believable. This documentary gives us a clear insight into what it feels like to have Down syndrome in 21st century Australia. The lack of opportunity, the discrimination, the general lack of knowledge and ignorance displayed by the general public, whilst dif cult to look and listen to, is a story that had to be told. Whilst the subject matter focuses on Down syndrome the story could be translated to any disability.

For any parent or person with Down syndrome, this story of Paul’s and the other families featured will provide inspiration and will resonate with experiences already had, or in the future. One of the standout eye-openers was Paul’s questioning of the general public. Although every person interviewed scored themselves as a perfect ten in social acceptance and understanding of disability, all then admitted to never having spoken to a person with a disability! That is why the release of this lm is a long overdue necessity if we want to further the rights of those with disabilities and change attitudes in the community.

This documentary should not only be essential viewing for every family which has a connection to Down syndrome, but should be mandatory viewing for all teachers, medical students, paediatricians, other professionals, policy-makers, politicians and the general public.

Diane Tymms is a mother to Harry who has Down syndrome and his twin sister Louisa. Diane is a medical sonographer who enjoys writing and is passionate about increasing awareness and acceptance of disability.

!"VIC"!"NSW

DVD’s are available for sale by phoning 1300 658 873.



Access Finder www.access nder.com.au

Activ Parent Portal www.parentportal.activ.asn.au

Arts Project Australia (03) 9482 4484 www.artsproject.org.au

Association for Children with a Disability (03) 9818 2000 or www.acd.org.au

1800 654 013

Better Health Channel www.betterhealth.vic.gov.au

Centre for Developmental Disability Health www.cddh.monash.org

Centrelink 132 717 www.centrelink.gov.au

Continence Aids Assistance Scheme (CAAS) 1300 366 455 www.intouchdirect.com.au

Commonwealth Carer Respite Services 1800 059 059

Down Syndrome Centre www.downsyndromecentre.ie

Down Syndrome Down Under Swimming Organisation www.dsduso.org

Down Syndrome Education International www.downsed.org

Down Syndrome International www.ds-int.org

Down Syndrome Nutrition www.downsyndromenutrition.com

Down Syndrome: Health Issues www.ds-health.com

Down Syndrome Research Center, Stanford www.dsresearch.stanford.edu

Early Support Developmental Journal www.earlysupport.org.uk

Family Advocacy www.family-advocacy.com

Lifeline 131 114

MyTime 1800 889 997 www.mytime.net.au

National Young Carers www.youngcarers.net.au

Parentline 132 289

Personalised Lifestyle Assistance Project www.plavic.net.au

Raising Children Network www.raisingchildren.net.au

Telecommunications Industry Ombudsman 1800 062 058 www.tio.com.au

Understanding Intellectual Disability and Health www.intellectualdisability.info

United Nations Enable website www.un.org/disabilities/

Visual Aids for Learning www.visualaidsforlearning.com

Connections



Your logo could be here. Phone Janene on 1300 658 873 to discuss sponsorship opportunities.

The joy of living in the moment ..... Annalise Haigh, Special Children’s Christmas Party, Sydney, 2009

Endnote

Club 21’s Abdullah enjoyed work experience at AFL House during February

There’s always time to dance - SCCP, Sydney, December

Director Liz Collins with the cast from Dance Like Nobody's Watching. Down Syndrome Victoria screened this lm as a fundraiser during December. DVD’s are available for sale by phoning 1300 658 873

Club 21 members at the Australian Open

Club 21 members enjoyed ACDC tribute band Thunderstruck at Melbourne Zoo Twilights


Voice March 2010 - Education

Documents

Transcript of Voice March 2010 - Education