You do not want to miss this.

Make sure you check out the long list of world-leading presenters, who will cover most key topics that may be important to people with Down Syndrome as part of the NZDSA Virtual Down Syndrome Conference.

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The NZDSA this month will celebrate its 40th anniversary by hosting the largest Virtual Down Syndrome Conference ever organised in this country, to coincide with World Down Syndrome Month.

The virtual conference will offer a stunning variety of high-profile Kiwi and international expert speakers who will cover a wide range of topics including education, health, speech, relationships, ageing and legal issues.

The conference will have several presentations focused on health with Andrea Simonlehner from Natural Equilibrium doing two sessions on gut health and fussy eaters, while Geraldine Whatnell will share her expertise on growing old with Down syndrome.

One session that will be exciting to parents as well as younger adults with Down syndrome will be relationship expert Dave Hicks talking about the theory and practicalities of getting into a relationship. Dave is likely to become a familiar face on New Zealand television as he was the expert on the upcoming television series Down With Love.

One of the speakers from the United States will be Kavita Krell from Massachusetts General Hospital who will explain how you can develop an innovative online health plan from anywhere in the world, while her colleague Dr Brian Skotko will do a presentation about and for siblings of people with Down syndrome.

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The conference will also offer sessions wellbeing, speech therapy, advocacy and educations, so there will be there something for all stages of life and every member of our community.

The conference will also include a number of sessions specifically for people with Down syndrome, so for the full list of those events, please click here (all these sessions are marked in orange below).

The NZDSA has hosted many conferences, seminars and workshops during its history, but geographical and financial restraints often restricted the number of people who were able to attend.

All those barriers have now been removed by modern technology and the new digital skills we have learned during lockdown.

With modern video conferencing technology, there is no reason to miss out so keep an eye on our E-new and Facebook page for upcoming details how to register.

To get all this information, make sure we can send you our newsletters, so please register your details on the NZDSA website FOR FREE, at www.nzdsa.org.nz

Some sessions will be recorded as a future resource, but many others will not, so make sure you do not miss out on the webinars you are interested.

The NZDSA is non-for-profit charity that receives no Government funding and fully depends on grants and donations, so when you register or think the webinars are of value to you and your community, please remember to make a donation, so we can continue to offer these services to raise the awareness and knowledge around Down syndrome.

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THE FULL PROGRAMME OF THE VIRTUAL DOWN SYNDROME CONFERENCE

Tuesday 5th October, 7pm – 8pm

Bridget Snedden, President of Down Syndrome International(DSi)

Theme: Wellbeing and Rights

Title:  Getting to the good life – The importance of having a vision

Audience:  Everyone

 

Wednesday 6th October, 7pm – 8pm

Dr Mark Sinclair, Private Practice

Theme: Wellbeing

Title: Keeping an Emotional Balance (At home with children and teens)

Audience:   Parents, whānau, professionals – all ages

 

Thursday, 7th October, 7pm – 8pm

Trish Grant, Director of Advocacy IHC

Theme: Education and Rights

Title: Are we there yet?

Audience: Parents, whānau, professionals with a focus on school-aged children

 

Saturday, 9th October, 10am – 11am

Sir Robert Martin

Theme: Rights and Wellbeing

Title: From Institution to Knighthood

Audience: Everyone

 

Tuesday, 12th October , 7pm – 8pm

Erika Butters, Director, The Personal Advocacy and Safeguarding Adults Trust

Theme: Rights

Title: Supported Decision Making – a Human Right

Audience: Parents, whānau, professionals with a focus on youth and adults

 

Wednesday, 13th October, 7pm – 8pm

Dr Maree Kirk, Director, STPDS NZ

Theme: Education

Title: Individual Education Plan – The capabilities approach

Audience: Parents, whānau, professionals with a focus on school-aged children

 

Wednesday, 14th October, 12pm-1pm

Andrea Simonlehner, Natural Equilibrium

Theme: Health

Title: Brain and Gut Health for people with Down syndrome

Please note this session will view the recorded session hosted in September (there will be no Q&A)

It will be beneficial to view this for the session with Andrea on the 27th October

Audience: Parents, whānau, professionals – all ages

 

Thursday, 14th October, 7pm – 8pm

Who: Erika Butters, Director, The Personal Advocacy and Safeguarding Adults Trust

Theme: Rights

What: Supported Decision Making – a Human Right. 

Audience: People with Down syndrome

 

Saturday, 16th October, 10am – 11am

Dr Brian Skotko,  Director of the Down Syndrome Program at Massachusetts General Hospital

and Susan Levine, Co-founder and social worker at Family Resource Associates, Inc.

Theme: Siblings 18+

Title: Adult brothers and sisters of siblings with Down syndrome: Exploring past experiences and current roles

Audience: Siblings 18+

 

Tuesday, 19th October,  7pm – 8pm

Fiona Kenworthy, Speech & language therapist

Clinical Director /Small Talk Therapy

Theme: Speech and Language Therapy

Title: Early literacy skills for children with Down syndrome – Families making a difference

Audience: Parents, whānau, professionals with a focus on early literacy skills (not age specific)

Hosted by UpsideDowns Education Trust and the NZDSA

 

Wednesday, 20th October, 7pm – 8pm

Dave Hicks, Academic Programme Manager – Unitec

Theme: Wellbeing

Title: Relationships – Theories and Practicalities

Audience: Parents, whānau, professionals – all ages

 

Thursday,21st October, 12pm -1pm

Gretchen A. Good, PhD, Senior Lecturer in Rehabilitation and Disability Studies, Massey University and Jane Lee, MSW, Tutor in Rehabilitation and Disability Studies, Massey University

Theme: Wellbeing and Rights

Title: Parenting during a pandemic:  Have any lessons been learned?

Audience: Parents, whānau, professionals – all ages

 

Thursday 21st October, 7pm – 8pm

Who: Dr Mark Sinclair, Private Practice

What:  Managing your feelings

Audience: People with Down syndrome

 

Saturday, 23rd October, 10am – 11am

Kavita Krell, Director of Customer Experience for Down Syndrome Clinic to You (DSC2U)

Theme: Health

Title: DSC2U: An online personal care plan for caregivers and primary care physicians

Audience: Parents, whānau, professionals  – all ages

 

Tuesday, 26th October, 7pm – 8pm

Andrea Simonlehner, Natural Equilibrium

Theme: Health

Title: Fussy Eaters

Audience: Parents, whānau, professionals – relevant for all ages

 

Wednesday, 27th October, 7pm – 8pm

Geraldine (Dina) Whatnell, Nurse Practitioner Mental Health and Addictions Service Palmerston North Hospital

Theme: Health

Title: The Golden Years: Ageing and Down Syndrome

Audience: Parents, whānau, professionals – focus on adults who are 25+

 

Thursday, 28th October, 7pm – 8pm

Who: Libby Hunsdale, Michael Holdsworth, Rochelle Waters, Amelia Eades, Luka Willems, Lily Harper, Carlos Biggemann, Bradley Lewis, Jacob Dombroski, Alfie Linn

What: Meet the Stars!

Audience: People with Down syndrome, but others are welcome to join

 

Saturday, 30th October, 10am – 11am

Dr Maree Kirk, Director, STPDS NZ

Theme: Education/Wellbeing

Title: Making visions work – Social skill development for identity across the lifespan

Audience: Parents, whānau, professionals with a focus on school-aged children

 

The New Zealand Down Syndrome Association has launched a wonderful new resource to fill a “huge void” for health professionals when dealing with new parents of a child with Down syndrome.

“We have received overwhelming feedback from parents and whānau that the health professionals they deal with in those whirlwind first days, often do not have the information they need, so we hope that this will help both parties fill this huge void,” says Zandra Vaccarino, the NZSDA’s National Executive Officer.

Vaccarino says that new parents deal with a variety of health professionals, from their midwife, early intervention team and paediatrician to the Plunket nurse and GPs.

“Often these professionals seem to think that one of the other will have given given parents and whanāu specific information on Down syndrome, but often the parents fall in a big information-free abyss,” says Vaccarino.

The National Executive says that the Down syndrome diagnosis is a surprise for many parents so they have lots of questions and need to learn more about Down syndrome as well as navigate where and how to access  support.

“Parents are looking for answers and support, but often the first conversations are unnecessarily stressful and very upsetting, when the health professionals have no information – or worse – provide misinformation,” says Vaccarino.

The new brochure, Tips For Health Professionals, provides professionals with resources, key contacts and useful tips on how to approach these vulnerable parents in a respectful and sensitive manner.

“In many cases, doctors, nurses or other support workers will have limited knowledge of Down syndrome and may not be aware of the amazing resources and support organisations available to the parents.”

A large section of the brochure covers the language professionals are suggested to use and what phrases to avoid, as they may be considered offensive or archaic.

The brochure also includes a milestone map specifically for children with Down syndrome.

“Usually parents are given a milestone list for typical children. Having a specific Down syndrome road map will provide parents with realistic expectations about their child’s development and hopefully avoid unnecessary concerns and frustration.”

Health professionals and anyone interested in people with Down syndrome can download Tips For Health Professionals, and other resources on the NZDSA website. The resources are free to download once you have registered your contact details.

 

 

Over the more than 40 years of its existence, the Champion Centre has helped transition many children with Down syndrome into early childhood centres and schools. Some teachers have good knowledge about the needs of children; but others have questions and concerns about how best to support them in the learning environment. As a result of many conversations with teachers, the Champion Centre has developed a small booklet which it offers to early childhood centres and schools to help them understand how best to support children’s learning. Below is a sample section from this booklet to give a flavour of the information and advice being offered.

Supporting learning

Learning is rarely a straight path for any of us; but for children with Down syndrome it often seems to be particularly circuitous. Learning happens because new connections are being formed in the brain. And in the brains of children with Down syndrome forming these connections can take longer and can need more repetition and reinforcement to be maintained than in the brains of typically developing children. As a result, skills may appear and then apparently disappear, only to reappear later. Sometimes this is the result of periods of poor health or the transition to a new environment; but at other times, learning requires not just the ‘addition’ of new information but the ‘reorganisation’ of existing knowledge and this can temporarily or permanently dislodge things that have already been apparently learned. As each new skill or piece of information is learned, it is important that existing ones not be forgotten, but reinforced through activities that integrate the old and the new.

An ability to sequence and to process sequences (of words, of numbers, of activities and ideas) is at the core of learning, and children with Down syndrome find sequencing challenging. They process more slowly than typically developing children, and their challenges with memory mean they often forget earlier parts of the word, sentence, instruction, or idea by the time they reach the end. In other words, because auditory processing is poor, it does not support memory (with internal speech) the way it does for most typically developing children.

Here are some strategies that teachers and other learning support personnel can use to help children learn in the classroom:

  • Use visual schedules to help the child understand the routines of the classroom and the sequence of activities expected
  • When giving instructions or directions present them both orally and with a visual support (e.g., a picture or a written word) and make sure they are simple and step-by-step and that the child is watching, listening and attending. Be aware that children with Down syndrome may process only part of the instruction and appear to have done the opposite of what was intended (e.g., “don’t cut it” may be processed as “cut”). Alternatively, if they did not understand they may simply copy another child.
  • Help children understand the steps involved in a complex task and help them think about those steps, perhaps by saying “What do I need to do before….?” “What do I need to do next….?”, “What do I need to do after….?” In this way, they will begin to understand the structure of the task (beginning, middle, end).
  • Remember that children with Down syndrome are not as flexible in their thinking as other children and will have difficulty revising their approach to a task already learned. Where possible teach to the endpoint you want to achieve; breaking the task into manageable components.
  • Limit the distractions around the child while still keeping them as part of the classroom. Think about providing them with only the tools (pencils, ruler, etc.) that they need for the job at hand.
  • While Buddy systems are important for social connection, other young children will not understand the challenges of learning for children with Down syndrome, so limit peer teaching/learning expectations.
  • Be overt with the language of “learning to learn” is important. For example, when selecting a book it is important to talk about the concept of reading for meaning e.g. “Let’s find out what this book is about…” “What will happen next?” “What was this book about?”
  • Let them use a keyboard if they find this more effective than using a pen or pencil that requires more fine motor control that they are able to manage.
  • Make sure you know whether they are staying on task, perhaps by having them working near the teacher. Help them avoid paying attention to irrelevant details of the task.
  • Give them time to process; support them when they make mistakes; and help them achieve a sense of success and achievement.
  • Make sure they know that you care that they do their best. Give praise and encouragement and expect to repeat verbal prompts and reminders even if they have a visual prompt as well.
  • Connect with the child’s parents and make sure you have good communication so that the parents understand what the tasks of school are and can support the child to practice them at home.

Motivation for learning depends on interest and meaningfulness. Ensure tasks are meaningful and where possible, playful, so that children are engaged and motivated to participate.

The above is a section on Supporting Learning from a short booklet developed by The Champion Centre, for early childhood and primary school teachers entitled “Helping Children with Down Syndrome Reach Their Full Potential”.

The full booklet has sections on supporting language and communication, supporting learning, supporting behaviour, and supporting children as people.

A printed copy is available from the Champion Centre for $9.50, including postage, payable by cash or via direct deposit. Please contact [email protected] for more details.

The Champion Centre in Christchurch has kindly agreed to provide a regular contribution to CHAT 21 to assist parents of young people with Down Syndrome. In this edition, Dr. Susan Foster-Cohen, Champion Centre Director reviews the guide Are You Worried About Your Child?

Are you worried about your child? A guide to support families of children with complex needs and the professional who care for them (This free guide can be downloaded from: http://www.tacinterconnections.com/images/Guide2-to-Support-Families-of-Children-with-Complex-Needs.pdf)

A group of professionals from the UK, South Africa, Australia, Italy, Canada, and New Zealand, including The Champion Centre’s founder, Dr. Patricia Champion, has compiled this 20-page guide aimed at supporting parents raising children with disabilities to feel less tired and stressed and to enjoy life with their child. Written in an accessible style, it consists of five main sections, each one addressed to both parents and professionals and illustrated with comments from parents about their experiences. The introductory section ends with the following challenge that speaks to the hopes and fears of many parents:

Wouldn’t it be nice…

…if your child received the same welcome to the world as every child?

…if you were seen as the expert on your child by everyone?

…if you felt you were listened to and knew people who share you concerns about your child?

…if you felt cared for and supported by an understanding community?(p.1)

A child having fun at The Champion Centre

The first of the main sections “Let’s start at the beginning”, explains the guide is “to help you and your family manage everything without getting too stressed and exhausted” as well as “help you create enjoyable moments together with your child every day.”

In other words, it aims to help parents achieve a better quality of life for themselves, their children and their family.

Its call to professionals in this first section is to put their focus on supporting the family to promote the best possible relationship with their child and the wellbeing that it brings.

Working on hand-eye coordination

The second section, entitled ‘Respect”, puts the focus on how families cope with the news that their child has an illness or disability and encourages them to celebrate their arrival as they would any other child.

It reminds parents that all children need love, warm responsive predictable care from their parents, safety and fun, even while it acknowledges the sadness many parents feel.

Mum and daughter working together at The Champion Centre

It encourages parents to find those friends, other parents, and sympathetic professionals who can support them.

It then encourages professionals to recognise the multiple sources of stress in parents, to always to ask them about their priorities and to work in partnership to plan a respectful way forward.

Children enjoy the challenge of the playground

“A quality of life”, the third section, addresses causes of stress in lives made overly busy by multiple appointments, assessments, and interventions.

It asks parents to identify, through a series of questions, where those stresses lie and what might help.

The questions include “If you have been keeping it all to yourself, can you find someone to talk it over with?” “Does your child sleep badly?” “Are you struggling financially?”

The advice to professionals in this section suggests that not all parents will admit to the levels of stress they are under and may need them to open the conversation and listen carefully to what parents are saying.

It also urges them to put the infant’s quality of life at the centre of their thinking and to help parents get a break from caring if that is what they need.

Early intervention at The Champion Centre

The fourth section, “Keeping it all together”, is about making sure that early intervention is coordinated, integrated and working towards common aims.

It acknowledges that in many cases, parents are left to pull everything together from an often overwhelming number of different appointments and professionals.

It proposes a key worker model or a multi-disciplinary ‘Team Around the Child’ approach that includes parents as team members and can help avoid them having to answer the same questions over and over again, and of getting different and conflicting information in response to their questions.

Early intervention at The Champion Centre

Finally, “Getting the Family Back on Track” is about looking towards the future when parents become more confident in parenting their child and feel in charge of their lives.

It includes the sage advice that “one of the best ways of caring for your child is to look after yourself.”

At the same time professionals are reminded that “Families need to find time and energy to enjoy being together, to develop strength and resilience. Families need to move at their own pace without pressure to conform to other people’s timetables”.

But they are also reminded that “while it is a professional instinct to be positive and upbeat about the child, this can sometimes discourage parents from voicing their anxiety and other negative emotions.”

Throughout, the guide is gentle in tone; asking questions to help parents and professionals solve issues for themselves, rather than telling them what to do.

Together with the honest reflections of parents that appear as margin quotes, this guide will help families to understand and express what they experience, encourage good communication between parents and professionals, and introduce both to practical ideas that can help improve quality of life for child and family.

Children enjoy music at The Champion Centre

Reviewed by Dr. Susan Foster-Cohen, Champion Centre Director.

 

 

From sign to word: One size does not fit all.

INTRO:
Early intervention experts Susan Foster-Cohen from the Champion Centre in Christchurch and Anne van Bysterveldt from the University of Canterbury have found some interesting patterns when researching the use of sign language alongside developing speech.

In New Zealand, most children with Down syndrome are explicitly encouraged to use manual signs (either home signs or NZSL signs) as a means to help children communicate and encourage their spoken word development.

The value of this approach is now well established thanks to the work of researchers such as Sue Buckley, Carl Dunst, and others.

However, we still don’t know much about how individual children use their signs and words as they move through early childhood and what parents and teachers need to know in order to encourage the transition to spoken words.

In our research, we have been examining the make-up of children’s vocabularies and how they change over time, because children appear to vary greatly in the degree to which they use signs, both initially and over time.

Some children start out using (almost) exclusively sign and then gradually transition to only using spoken words. Other children stay with sign as their primary means of communication or they operate with a bilingual system where they use both sign and word for the same thing.

We asked parents of children with Down syndrome attending the Champion Centre to complete the New Zealand Communicative Development Inventory (CDI) every six months from the age of two-and-a-half or three to when they went to school.

The CDI has a list of 675 items that are typical of pre-school children’s vocabulary (including words for food, animals, places, people, colours, etc.) and we gave parents the option of indicating whether their child had a sign, a word, both, or neither for each item.

All the children were growing up in spoken language families (i.e. none were using a full sign language).

We were not worried whether the sign was a recognisable NZSL sign or a hand gesture the family had come to recognise as a sign; and we were not worried about whether anyone outside the family could understand either the sign or the child’s version of a word.

We simply took the parents’ perspective on their child’s communication, which they knew so much better than we could ever know as researchers.

We are immensely grateful to the parents for completing this rather tedious task so often as part of our study.

When we looked at the changes over time for each child in the study, we found a number of different patterns which we can illustrate with the graphs below. In these graphs, the green bars show the number of words for which a child used only sign, the blue shows the number for which they used both sign and word, and the red shows the number for which they had only words.

Graph 1

In the first graph you can see data from a child who started early in her transition from sign to word, progressing steadily over the time period from 36 to 66 months, and went on to school using mostly words and just a few signs, most of which had a word equivalent as well.

As a strongly oral language user, this child is likely to be able to use her spoken language in the classroom and to be understood by her classmates and teachers.

She does not, however, have a very large vocabulary overall, as measured by the CDI, having only 234 of the 675 possible items that can be ticked, so we would hope to see her teachers encourage her vocabulary to grow now she has the transition to spoken words sorted.

Graph 2

In the second graph we see a child who has a larger vocabulary at school entry (384 items) and a greater proportion are signs.

It does appear, however, that this child ‘got the hang of’ spoken words somewhat later, fairly shortly before transitioning to school and will be using both sign and word with their teachers and classmates.

Here we would hope that the school welcomes the use of signs and supports what looks like the beginning of a strong transition to spoken words.

Like other researchers before us, we found a range of patterns such as these. In addition to the two patterns shown here, we also found some children who never, or almost never, used sign but who still succeeded in building a spoken vocabulary and children who used only sign and did not succeed in developing spoken words before they went to school. This last pattern only occurred where the overall vocabulary was very small.

However, unlike other researchers, we did not find a minimum of signs was needed before spoken words emerged. Indeed, some children in our study were able to use spoken words as part of even a very small vocabulary.

The important points to take from our work, which we have presented at national and international conferences and are currently writing up for publication, are:

(a) that each child with Down syndrome is an individual and will use signs and words to engage in the key relationships in their lives;
(b) that parents and others should offer and encourage both signs and words when engaging with children, so that the child can take and use what makes the most sense to them; and
(c) that teachers and speech-language therapists should know about the early developmental path of sign to word of each child so that they can support the continued growth of the child’s communication in school and beyond.

We have known for some time now that language development continues throughout childhood, adolescence and into adulthood for people with Down syndrome and that continuing to support that development is vital.

That lifelong trajectory starts with the early years we study at the Champion Centre.

Dr. Susan Foster-Cohen is Director of the Champion Centre and Adjunct Associate Professor of Linguistics at the University of Canterbury.

Dr. Anne van Bysterveldt is a Speech Language Therapist and Senior Lecturer in Early Intervention at the University of Canterbury.  

Child at The Champion Centre