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CHAT 21

Issue 78, Winter 2019

CO M M U NICAT IO N | HOL ISTIC | ADVOCAC Y | TAONGA

Journal About & For The New Zealand Down Syndrome Community ISSN 11776323

Our people

Michael Dodds and his ball date Tayla Missen going to the

Sadie Shanley on her second birthday.

Cambridge High School ball.

Katie Lendrum.

Max Nyenkamp at his school ball.

Contents

From the Editor

New beginnings for Logan

NEO notes

President's pens

Jacob Dombroski on Shortland St

Down Syndrome and Autistic Spectrum Disorder: A look at what we know

Down Write Brilliant

From sign to word: One size does not fit all

Duncan Small – A man of the land

Keratoconus screening programme saved our son’s eyesight

Joe Payton: Man on a mission

Learning crumb by crumb

IHC library expands resources

NZDSA notices

Contact directory

Me and my pet

We hope this winter edition of Chat 21 will give you some great reading on those long, chilly, dark evenings. The edition in your hands should provide a variety of stories and photos that will appeal to all our readers, for people with Down syndrome of all ages, their whānau, support people, or anyone else interested in our community. I want to thank all our readers and the wider Down syndrome community for providing great stories and photos. Our community is very small, but very connected and without your support and feedback this journal would be impossible to create. My special thanks go out to Nigel Winter for sharing the challenging journey he has been on to find a place where his son Logan can have a fulfilling and happy life. He writes in detail about the obstacles and the pressure this put on his family, which will resonate with many families with a young adult with Down syndrome. For families affected by a dual diagnosis of Down syndrome and autism, I would like to invite you to have a read of the findings by US researcher George Capone, which we were kindly able to reproduce from the National DS Society in the United States. This edition also features another article on early intervention from the Champion Centre on sign language and another education article by Margi Leech on early learning methods. On top of all these informative stories, there is plenty of inspirational material from our young people and their families. Make sure you read the article by author Charlotte Gendall on Duncan Small, a larger-than-life character who passed away last year, but whose legacy lives on in the central North Island farming and equestrian community. Thanks again for sending in all your articles and photos and I can’t wait to hear your feedback or ideas. Please keep those photos coming and don’t hesitate to contact me on editor@nzdsa.org.nz Kind regards Coen Lammers

This issue of CHAT 21 was made possible with donations from Southern Stars.

Disclaimer Through the quarterly Journal, the New Zealand Down Syndrome Association will attempt to report items of interest relating to Down syndrome. The NZDSA does not promote or recommend any therapy, treatment, agency, product, political position, religion or advice. The opinions expressed in CHAT 21 are not necessarily those of the NZDSA. The editor reserves the right to make corrections to materials submitted for publication. All photos sent in to the journal become the property of the NZDSA and can be used in other NZDSA publications.

New beginnin Nigel Winter takes our readers along the challenging, but rewarding journey with his son Logan to find their place in life.

Living Options in Alexandra.

My son Logan is a 21-year old man with Down syndrome, Autism, Dyspraxia and mild intellectual disability. Recently on our Facebook page I posted a video of Logan in action at the Living Options cafĂŠ in Alexandra, Central Otago. I would like to share our incredible journey over the last three years with you all, the highs and lows in the hope it will give others the insight, that great things can and will happen for our children and families. In February 2016, during a rare weekend away for me without Logan and on a ride along the Central

CHAT 21 | Issue 78, Winter 2019

Otago Rail Trail, I came alongside a young 18-yearold woman with Down syndrome and her support worker out for a Saturday afternoon ride. I still distinctly recall the soft toy elephant in the basket on the back of her bike. As Logan was around the same age, like all of us parents, I was keen to spend a few minutes riding and talking with them to see how other families, individuals and their parents handle lifeâ€™s challenges in what for most of us is a murky, unchartered journey. We spoke only for 5-6 minutes, but that 5-6 minutes was to majorly change our lives.

ngs for Logan

Logan working on his painting “New Beginnings”.

I was explaining life with Logan and my worries and fears for the future with the support worker who asked me “have you heard of Living Options here in Alexandra?” Living Options is an organisation which came about by the vision of one woman who saw a need for families of special needs people and owing to her compassionate nature, formed the foundations of this organisation from her garage. Living Options Charitable Trust was set up in Alexandra in 2011 to provide support services in Central Otago for people with intellectual, physical

New beginnings for Logan

and sensory disabilities enabling them to live independently in their own community. Prior to that, such people often had to leave their family and community in order to receive the services they required. In recent years Living Options, has extended its services into the Queenstown/Wakatipu area. Individuals are encouraged to take control over their own lives and to have input into any major decisions affecting them. Support is flexible, focusing on the person with the family and whānau involvement. Living Options has an activity centre in Alexandra providing recreational and educational opportunities and training in life and social skills. Upon returning from my weekend away I embarked on researching and discovering what I could about this place. Once I established contact we travelled up for a couple of visits with Logan, who clearly was totally at ease and loved being there. Finally he was in a place where he wasn’t judged, could comfortably be himself and was accepted by all for the person he is. I was desperate for Logan to have an amazing life in a warm, safe, loving environment and Living Options clearly met my vision for Logan. This is a service provider which puts the emphasis, not only on the individual but also firmly on the family and the care management that the staff provide is exceptional. As we were Invercargill-based, and clearly there was nothing of this calibre there and a future that was uncertain, we purchased a home in Roxburgh (30 minutes south of Alexandra) in January 2016, which we rented out for the first year, while familiarisation with the area and upcoming changes were implemented for Logan. Twelve months later, I took the biggest gamble of my life, sold up everything and moved up full-time so Logan could attend the centre during the day and work towards a permanent residential contract,

Logan enjoying being a waiter at the CafĂŠ.

Food prep in the kitchen.

ultimately seeing him living as independently as possible while having full support when needed. This was a journey that was going to test us all and would either be a success or a failure, and I was extremely hesitant to leave what I already knew. However to keep everyone happy, and to give Logan the best opportunity possible, I made this move. This was a tough period with days starting at 5.30am, commuting 42.4km into Alexandra (at times in foggy, icy, white out conditions during winter), dropping Logan off, facing a full day at work before collecting him at the end of the day and returning home. Then began the usual regime with Logan sorting himself the evening before settling for the night so I could finally sit down, usually 10pm, for a breather and bed before the following day saw the same routines present themselves. I was also struggling with issues from my own childhood in this area and working in the town and seeing landmarks everyday was impacting more on me than I thought they would. It was difficult to come in daily to a place that harboured many unpleasant memories for me. This daily grind took a major toll on me with constant tears and breakdowns, but each time management at

the centre would promptly sit me down, make phone calls, and juggle rosters just so Logan could have 3-4 nights in a house so I could have a breather. These periods were instrumental in me keeping my sanity. The many years of living a life with a disability and daily issues ultimately took its toll on my relationship and in November 2018 my partner of 17 years and I parted ways. This had been coming for quite some time and the only silver lining was Loganâ€™s direction in life and the vision I had for him over the last decade particularly was coming into fruition. Logan is now thriving in his new environment and as of March this year is now under a fulltime residential contract. He lives in a flat with two other flatmates/friends and is involved in all aspects of running a household, including chores and meal preparations with full support when needed. The interaction with his peers is amazing and his progress in a very short time astounds me. With the help of CCS in Alexandra, and in conjunction with Living Options Logan has a supported job working with and exercising puppies in a local boarding kennel and soon will also be working

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Finally enjoying the rewards for the journey travelled.

Logan working in the kitchen at Living Options.

watering plants in the garden section of a local retailer, giving him the same things we all need in our lives, a sense of self-worth, belonging and being a team member whose contributions are valued. Thursday afternoons from 1.30 to 3.30pm Living Options run a community café open to the public with everyone involved in various roles, whether it be taking orders, plating up, being a waiter or waitress, clearing tables. It’s not uncommon for up to 70 people to come and support this incredible venture. All the food is cooked, made or baked the day prior, once again with all members of the centre being involved. Thanks to this amazing place, management and staff second to none, I now have the support I need to finally, after 21 years, get some of my life back which I will admit is exciting, but is also taking a bit of getting used to. Sitting here writing this and reflecting I guess the point I wish to share with you all is this. I’ve had two relationship breakups, faced alcohol issues, depression and mental health issues. I’ve had to confront the past and had an unstable work history in the quest for finding a good work/ life balance.

I’ve battled agencies, been knocked back numerous times, shed tears and tantrums as well as experiencing laughs, smiles, milestones and magical moments on this 21-year journey. Whatever your vision, goals or desires you have for your children and their future - keep striving, keep going. You’ll have mountains to climb and dark days to face – but keep going and never give up because the destination is so worth the at times arduous journey. This I can promise you! So if you happen to be passing through Alexandra on a Thursday between 1.30 and 3.30pm, call in, say hi and check out Café 29 at Living Options centre. You’ll be warmed by the smiles on the faces and the best damn coffee and cake in town, I’ll stake my reputation in it.

New beginnings for Logan

NEO notes By Zandra Vacarino - National Executive Officer

Kia Ora “Whiria te tangata – weaving the people together” Did you join in any events to mark National Volunteer Week which was celebrated between the 16th and 22nd June 2019? The theme for 2019, “Whiria te tangata – weaving the people together” resonated with me. I think one of the most valuable roles of volunteers in the Down syndrome community is to connect people and work together. Each person has a strand that they can contribute, and when we weave our strands together we create not only a beautiful kete but also a space to connect, draw strength from others, learn together as well as collectively empower for advocacy. I believe working together in our community is the only way to bring about change for people with Down syndrome. Thank you to all our amazing volunteers – past and present - who started, developed and continue to evolve the Down syndrome community in New Zealand. The contributions of our many volunteers are diverse, ranging from: •

•

• • • •

•

NZDSA’s Annual Appeal - June to August 2019

A very important event in the NZDSA calendar is the annual fundraising telephone campaign. We are fortunate that Southern Stars, a Charitable Trust, runs the campaign on behalf of the NZDSA as the funding we receive supports so many valuable NZDSA projects. This year the campaign kicks off on the 26th June and runs through to the 6th August. If you receive a call from a Southern Stars team member, take a moment to thank them for supporting our community and if you do make a donation, thank you! The funding the NZDSA has received from generous donors over a number of years has enabled the NZDSA to host camps and workshops for people with Down syndrome. In addition, the past appeals have enabled the NZDSA to produce resources like the Plan for the Future, Turn the Page, Transition from School Resource, Creating a Positive Hospital Experience Resource, Play and Daily Routines and the more recent Dear Community and Dear Health Professionals digital stories.

Thank you Southern Stars for your on-going support.

making the time to walk alongside others to support them helping to weave enduring and meaningful relationships through hosting coffee mornings or play groups advocating for key issues raising awareness to create more inclusive communities hosting social events to promote friendships and develop networks cooking sausages, selling raffle tickets, to name just a few to raise funds to meet the needs of our community, and volunteering for … the list is endless.

Each contribution made is a thread that weaves the Down syndrome community closer together. I wonder if you can think of a volunteer in the Down syndrome community who you think should be recognised for their contributions. If you do, then you

CHAT 21 | Issue 78, Winter 2019

might want to nominate them for the 2020 National Volunteer Award. We will be calling for nominations in the October edition of CHAT 21.

Auckland Timber Industry Club Hosts a Charity Golf Day for the NZDSA

A huge thank you to all the members of the Auckland Timber Industry Club who hosted a charity Golf Day for the NZDSA. John Borkin represented the NZDSA and joined one of the teams as an NZDSA representative. Mohit and Vinnie, two self-advocates, helped to serve drinks and food throughout the day. In February, Edward Borkin, a member of STRIVE, attended the Auckland Timber Industry Club to do a short presentation and to accept the cheque for the NZDSA. The funding we received will support the core services of the NZDSA. Thank you so much to all who supported this event.

Emma with her Dad and Jennifer.

Downlights Update

Emma Sykes’ Downlights business has teamed up with Interworld Fundraising to create a branch of the business called Downlights Fundraising. This is exciting news for Emma, her mentor Jennifer Del Bel from Illumine and the Down syndrome community. This strategic alliance will assist Downlights to continue to grow and create more paid employment opportunities for the Down syndrome community. In addition, Interworld Fundraising and Downlights Fundraising have nominated the NZDSA as the recipient of funds from schools and community groups. To support Emma, Downlights and the NZDSA, you can order via the co-manufacturer’s website: www.illumina.co.nz. If you are part of a school or community group looking for a new fundraising initiative, please visit the Interworld Fundraising website: https://www.interworldfundraising.co.nz/downlightscandles-for-fundraising.html/ Finally, please have a look at the notices page to find out more about the NZDSA Ball, the AGM and the Rose Awards. Hei konei rā Zandra

NEO notes

Edward Borkin receiving a cheque from the Auckland Timber Industry Club.

President's pen By Kim Porthouse - NZDSA President

I hope this winter issue finds you well, warm and free of winter colds and flu. In the last issue, I mentioned that my family were about to start transitioning out of school using the new transformation system of Mana Whaikaha and the Enabling Good Lives principles. We have had several meetings with Brendon’s lead school teacher, our MOE Learning Support Advisor and the Mana Whaikaha Connector. Brendon was present at the first meeting. I can see the huge potential this new approach has and believe as the system develops and is refined we will have a far superior system than has existed in the past. The reason for this optimism is due to how much the system aims to see Brendon as the individual he is and puts the vision for his life to be full and rewarding right at centre stage. The Connector has also verbalised his recognition that we, his family deserve the support to make a good life for our family member whilst maintaining our own good lives. So far, we have put together a ‘path-plan’ with a vision for what Brendon’s dream job and activities look like and have come up with some ideas toward making this vision a reality. We are still working on what his long term living situation will look like, but have started drafting his ‘Enabling A Good Life Plan’.

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The process has taken longer than expected which means that halfway through the final school year there is no allocated funding towards the transition process. The lack of funding for teacher aide support means that opportunities to put transition ideas and plans into action are currently limited. I thought the Connector would make the connections to enable Brendon’s ‘Good Life Plan’, but at this stage, the Connectors are still developing their networks, which is limiting our experience. The timing of the new system coming into effect has delayed our transition plans so my advice for those facing transition next year is to start the plan before the end of the year. On a positive note, Brendon is now starting a couple of hours work experience in a café (which would be one of his dream jobs). He has also secured paid employment cleaning two afternoons a week at our local college (not the one he attends as a student) and as vacuuming and sweeping are two of Brendon’s favourite activities it’s an excellent fit for him. Hopefully, we will see some of you at our AGM being held in Palmerston North in October (see details in this issue). Cheers Kim

Our people

Greta Dixon is pleased to get to the summit of Mauao. Greta has incredibly low blood pressure and had several near faints and one full faint walking up the mount but when she got to the top she thanked me for a fun outing. Gretaâ€™s other sports are athletics, aerobics, 10 pin, netball and RDA.

Greta Dixon finishing the 5km walk at Mt Manganui.

The Down Right Dragons grading at Wellington Seido Dojo.

Jacobien Beekmans.

Jada Burnett with a friend from her class and her little sister on the playground after school.

CHAT 21 | Issue 78, Winter 2019

Dombrovski on Shortland Street By Coen Lammers The Down syndrome community in New Zealand includes huge numbers of Shortland Street fans and they were excited to see Jacob Dombrovski become the first actor with Down syndrome to feature in one of the countryâ€™s iconic shows. The Wellingtonian actor already has an impressive track record and performed his successful one-man dance, music and theatre show Big J Stylez at the Wellington Fringe Festival and Auckland's Herald Theatre. That is where he was spotted by Shortland Street producer Maxime Fleming who cast him for a three show guest appearance. The 26-year-old played the character Winston who is the younger brother of Lincoln and Prince Kimiora. The talented actor and dancer told the Herald on Sunday that his character is a "nice, chatty and always open hearted". He told the paper that he was a lifetime fan of Shortland Street and that landing the role was a dream come true. "I'm so happy about this opportunity and being able to challenge myself," he told the Herald on Sunday. The Big J Stylez show was a breakthrough moment for Jacob and shows the struggles he faced growing up. The show was created with Wellington theatre company Everybody Cool Lives Here, where Jacob gets the full support of the artistic brainstrust of Rose Kirkup and Nic Lane.

Jacob Dombrovski

Shortland Street producer Fleming said that they were always looking for new voices and she had heard about Jacobâ€™s outstanding performance in Big J Stylez. "So we flew him up to discuss creating a guest role for him on the show as Lincoln and Prince Kimiora's brother," she told the Herald.

Down Syndrome and Autistic Spectrum Disorder: A look at what we know By George T. Capone M.D., at the Kennedy Krieger Institute in Baltimore

During the past 10 years, I’ve evaluated hundreds of children with Down syndrome, each one with their own strengths and weaknesses, and certainly their own personality. Sometimes parents bring their child with Down syndrome to the clinic—not always for the first time— and they are deeply distraught about a change in their child’s behaviour or development. Some families do their own research and mention they think their child may have autistic spectrum disorder (ASD) along with Down syndrome. Others have no idea what may be happening. They do know it isn’t good and they want answers now. This article is for families in situations like this and other, similar ones. If your child has been dually-diagnosed with Down syndrome and autistic spectrum disorder (DS-ASD) or if you believe your child may have ASD, you will

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learn a little more about what that means, what we are learning through data collection, and insights to the evaluation process. There is little written in the form of research or commentary about DS-ASD. In fact, until recently, it was commonly believed that the two conditions could not exist together. Parents were told their child had Down syndrome with a severe to profound cognitive impairment without further investigation or intervention into a diagnostic cause. Today, the medical profession recognises that people with Down syndrome may also have a psychiatric-related diagnosis such as ASD or Obsessive Compulsive Disorder (OCD). Because this philosophy is relatively new to medical and educational professionals, there is little known about children and adults with DS-ASD medically or educationally.

Over the past six years we have gathered data and studied DS-ASD at the Kennedy Krieger Institute in Baltimore. We have collected and analysed data from clinical medical evaluations, psychological and behavioural testing, and MRI scans of the brain. We now follow a cohort of approximately 30 children with DS-ASD through the Down syndrome Clinic, possibly the largest group of children with DS-ASD that has been gathered.

What Should I Look For? Signs and Symptoms

As parents, it is common, if not expected, for you to worry at times about your child’s development. This can be especially troublesome if your child suddenly picks up a new habit you associate with ASD such as incessantly shaking toys. The children we have seen at Kennedy Krieger Institute who have DS-ASD present symptoms in several different ways, which we have separated into two general groups:

Group One

Children in this first group appear to display “atypical” behaviours early. During infancy or toddler years you may see: • • • •

• •

Repetitive motor behaviours (fingers in mouth, hand flapping), Fascination with and staring at lights, ceiling fans, or fingers, Extreme food refusal, Receptive language problems (poor understanding and use of gestures) possibly giving the appearance that the child does not hear, and Spoken language may be highly repetitive or absent. Along with these behaviours, other medical conditions may also be present including seizures, dysfunctional swallow, nystagmus (a constant movement of the eyes), or severe hypotonia (low muscle tone) with a delay in motor skills.

If your child with Down syndrome is young, you may see only one or a few of the behaviours listed above. This does not mean your child will necessarily progress to have autistic spectrum disorder. It does mean that they should be monitored closely and may benefit from receiving different intervention services (such as sensory integration) and teaching strategies (such as visual communication strategies or discrete trial teaching) to promote learning.

plateauing) in their acquisition and use of language and social-attending skills. This developmental regression may be followed by excessive irritability, anxiety, and the onset of repetitive behaviours. This situation is most often reported by parents to occur following an otherwise “typical” course of early development for a child with Down syndrome. According to parents, this regression most often occurs between ages three to seven years. The medical concerns and strategies for these two groups may be different. There is not enough information available to know at this time. However, regardless of how or when ASD is first discovered, children with DS-ASD have similar educational and behavioural needs once they are identified.

ASD 101: A Crash Course Signs and Symptoms Vary

Although we are documenting some similarities in the way DS-ASD presents, autism is what is considered a spectrum disorder. This means every child with DSASD will be different in one way or another. Some will have speech, some will not. Some will rely heavily on routine and order, and others will be more easygoing. Combined with the wide range of abilities seen in Down syndrome alone, it can feel mystifying. It is easier if you have an understanding of ASD disorders separate from Down syndrome. Autism, autistic-like condition, autistic spectrum disorder (ASD), and pervasive developmental disorder (PDD) are terms that mean the same thing, more or less. They all refer to a neuro-behavioural syndrome diagnosed by the appearance of specific symptoms and developmental delays early in life. These symptoms result from an underlying disorder of the brain, which may have multiple causes, including Down syndrome. At this time, there is some disagreement in the medical community regarding the specific evaluations necessary to identify the syndrome or the degree to which certain “core-features” must be present to establish the diagnosis of ASD in a child with Down syndrome. Unfortunately, the lack of specific diagnostic tests creates considerable confusion for professionals, parents, and others trying to understand the child and develop an optimal medical care and effective educational program. There is general agreement that: • •

Group Two

A second group of children are usually older. This group of children experiences a dramatic loss (or

•

Autism is a spectrum disorder: it may be mild or severe. Many of the symptoms overlap with other conditions such as obsessive-compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD). ASD is a developmental diagnosis.

Down Syndrome and Autistic Spectrum Disorder: A look at what we know

•

• •

•

Expression of the syndrome varies with a child’s age and developmental level. Autism can co-exist with conditions such as intellectual disability, seizure disorder, or Down syndrome. Autism is a life-long condition. The most commonly described areas of concern for children with ASD include: • C o m m u n i c a t i o n ( u s i n g a n d understanding spoken words or signs), • Social skills (relating to people and social circumstances), • Repetitive body movements or behaviour patterns. Of course, there is inconsistency in any of these areas in all children, especially during early childhood.

Children who have ASD may or may not exhibit all of these characteristics at any one time nor will they consistently demonstrate their abilities across similar circumstances. Some of the variable characteristics of ASD we have commonly observed in children with DS-ASD include: • • • • • •

• • • •

Unusual response to sensations (especially sounds, lights, touch or pain). Food refusal (preferred textures or tastes). Unusual play with toys and other objects. Difficulty with changes in routine or familiar surroundings. Little or no meaningful communication. D i s r u p t i ve b e h av i o u r s ( a g g re ss i o n , throwing tantrums, or extreme noncompliance). H y p e ra c t i v i t y, s h o r t at te n t i o n , a n d impulsivity. Self-injurious behaviour (skin picking, head hitting or banging, eye-poking, or biting). Sleep disturbances. History of developmental regression (esp. language and social skills).

Sometimes these characteristics are seen in other childhood disorders such as attention deficit hyperactivity disorder or obsessive compulsive disorder. Sometimes ASD is overlooked or considered inappropriate for a child with Down syndrome due to cognitive impairment. For instance, if a child has a high degree of hyperactivity and impulsivity only the diagnosis of ADHD may be considered. Children with many repetitive behaviours may only be regarded as having stereotypy movement disorder (SMD), which is common in individuals with severe cognitive impairments. Most parents agree that severe behaviour problems are usually not easily fixed. Finding solutions for

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behavioural concerns is one reason families seek help from physicians and behaviour specialists. Compared to other groups of children with cognitive impairment, those with Down syndrome, as a group, are less likely to have behavioural or psychiatric disorders. When they do, it is sometimes referred to as having a “dual-diagnosis.” It is important for professionals to consider the possibility of a dualdiagnosis (Down syndrome with a psychiatric condition such as ASD or OCD) because: • •

It may be responsive to medication or behavioural treatment, and A formal diagnosis may entitle the child to more specialised and effective educational and intervention services.

If you think your child may have ASD disorder, share this before or during your evaluation. Don’t wait to see what might happen.

Incidence

Estimating the prevalence or occurrence of ASD disorder among children and adults with Down syndrome is difficult. This is partly due to disagreement about diagnostic criteria and incomplete documentation of cases over the years. Currently, estimates vary between 1 and 10%. I believe that 5-7% is a more accurate estimate. This is substantially higher than is seen in the general population (.04%) and less than other groups of children with intellectual disability (20%). A review of the literature on this subject since 1979 reveals 36 reports of DS-ASD (24 children and 12 adults). Of the 31 cases that include gender, an astonishing 28 individuals were males. The maleto-female ratio is much higher than the ratio seen for autism in the general population. Additionally, in reports that include cognitive level, most children tested were in the severe range of cognitive impairment. The impact of a pre-existing medical condition such as Down syndrome on the developing brain is probably a critical factor in the emergence of ASD disorder in a child.

Brain Development and ASD

The development of the brain and how it functions is different in some way in children with DS-ASD than their peers with Down syndrome. Characterising and recording these differences in brain development through detailed evaluation of both groups of children will provide a better understanding of the situation and possible treatments for children with DS-ASD. A detailed analysis of the brain performed at autopsy or with magnetic resonance imaging (MRI) in children with autism shows involvement of several different regions of the brain:

•

• •

•

The limbic system, which is important for regulating emotional response, mood and memory, The temporal lobes, which are important for hearing and normal processing of sounds, The cerebellum, which coordinates motor movements and some cognitive operations, and The corpus callosum, which connects the two hemispheres of the cortex together.

At Kennedy Krieger Institute, we have conducted MRI studies of 25 children with DS-ASD. The preliminary results support the notion that the cerebellum and corpus callosum is different in appearance in these children compared to those with Down syndrome alone. We are presently evaluating other areas of the brain, including the limbic system and all major cortical subregions, to look for additional markers that will distinguish children with DS-ASD from their peers with Down syndrome alone.

Brain Chemistry and ASD

The neurochemistry (chemistry of the brain) of autism is far from clear and very likely involves several different chemical systems of the brain. This information provides the basis for medication trials to impact the way the brain works in order to elicit a change in behaviour. An analysis of neurochemistry in children with ASD alone has consistently identified involvement of at least two systems. • •

Dopamine: regulates movement, posture, attention, and reward behaviours; and Serotonin: regulates mood, aggression, sleep, and feeding behaviours.

Additionally, opiates, which regulate mood, reward, responses to stress, and perception of pain, may also be involved in some children. Detailed studies of brain chemistry in children with DS-ASD have not yet been done. However, our clinical experience in using medications that modulate dopamine, serotonin or both systems has been favorable in some children with DS-ASD.

How Do I Find Out? Obtaining an Evaluation

If you suspect that your child with Down syndrome has some of the characteristics of ASD or any other condition qualifying as a dual-diagnosis, it is important for him to be seen by someone with sufficient experience evaluating children with cognitive impairment—ideally Down syndrome in particular. Some of the same symptoms which occur in DSASD are also seen in stereotypy movement disorder, major depression, post-traumatic stress disorder,

acute adjustment reactions, obsessive-compulsive disorder, anxiety disorder, or when children are exposed to extremely stressful and chaotic events or environments. Sometimes when children with Down syndrome are experiencing medical problems that are hidden— such as earache, headache, toothache, sinusitis, gastritis, ulcer, pelvic pain, glaucoma, and so on— the situation results in behaviours that may appear “autistic-like” such as self-injury, irritability, or aggressive behaviours. A comprehensive medical history and physical examination is mandatory to rule out other reasons for the behaviour. When cooperation is elusive, sedation or anesthesia may be required. If so, use this “anesthesia time” effectively by scheduling as many specialty examinations as are feasible at one session. In addition to the medical assessment, you will be asked to help complete a checklist to determine whether or not your child has ASD. I use the Autism Behaviour Checklist (ABC), but there are others that are also used such as the Childhood Autism Rating Scale (CARS) and the Gilliam Autism Rating Scale (GARS). Each of these is completed either in an interview with parents or done by parents before coming to the appointment. They are then scored and considered along with clinical observation to determine if your child has ASD.

Obstacles To Diagnosing Ds-Asd

Parents sometimes face unnecessary obstacles in seeking help for their children. This is frustrating for everyone who is actively seeking solutions for a child. If you are in this situation and feel that your concerns are not taken seriously, keep trying. The best advice is to trust your gut feeling regarding your child. Eventually you will find someone willing to look at all the possibilities with you.

Lack Of Acceptance By Professionals

There is sometimes a lack of acceptance by professionals that ASD can coexist in a child with Down syndrome who has cognitive impairment. They may feel an additional label is not necessary or accurate. Parents may be told, “This is part of ‘low functioning’ Down syndrome.” We now know this is incorrect. Children with DS-ASD are clearly distinguishable from children with Down syndrome alone or those who have Down syndrome and severe cognitive impairment when standardised diagnostic assessment tools are used.

Confusion In Parents

Lack of acceptance, understanding, awareness, or agreement on the part of parents or other family members, particularly of very young children, about what’s happening is a major problem.

Down Syndrome and Autistic Spectrum Disorder: A look at what we know

Parents in this situation may find themselves at odds with each other about the significance of their child’s behaviour and what to do about it. As a result, marriages are stressed, parenting relationships with other children are strained, and life is tough altogether. Unfortunately, I have found that parents in this situation almost universally withdraw from local Down syndrome support groups because “I feel like people think I’m a bad parent because of my daughter’s behaviour.” Ideally someone in the parent group would recognize this when it is happening and offer additional support instead of watching them withdraw.

What Does It Mean? Behavioural Findings

Obtaining a diagnosis of DS-ASD is rarely helpful in understanding how ASD effects your child. It is complicated by the lack of information available, making it difficult to discern appropriate medical and educational options. To determine what behaviours are most common in DS-ASD we are conducting case-control studies which randomly match (for gender and age) a child with DS-ASD with a child who has Down syndrome without ASD. Through this process we have been able to determine the following: • Children with DS-ASD were more likely to have: • History of developmental regression including loss of language and social skills, • Poor communication skills (many children had no meaningful speech or signing), • Self-injurious and disruptive behaviours (such as skin picking, biting, and head hitting or banging), • Repetitive motor behaviours (such as grinding teeth, hand flapping, and rocking), • Unusual vocalizations (such as grunting, humming, and throaty noises), • Unusual sensory responsiveness (such as spinning, staring at lights, or sensitivity to certain sounds), • Feeding problems, (such as food refusal or strong preference for specific textures), and • Increased anxiety, irritability, difficulty with transitions, hyperactivity, attention problems, and significant sleep disturbances. Other observations include: •

•

Children with DS-ASD scored significantly higher than their peers with Down syndrome alone on sensory function, social relating, body and object use, language use, and social skills. Children with DS-ASD show less impairment

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•

in social relatedness than those with ASD only. C h i l d re n w i t h D S -A S D s h ow m o re preoccupation with body movement and object use than children with ASD alone. Children with DS-ASD scored higher on all five subscales of the ABC than children with severe cognitive impairment alone. Among children with Down syndrome only, even those with severe cognitive impairment do not always meet the criteria for ASD.

The conclusion I draw from this data is children with DS-ASD are clearly distinguishable from both “typical” children with Down syndrome and those with severe cognitive impairment (including children with Down syndrome). Thus, it is probably incorrect to suggest autistic-like behaviours are entirely due to lower cognitive function. However, the fact that autistic features and lower cognition are associated indicates there is some shared determinant(s) that are common to both features (ASD and lower cognition) of the condition.

What Now? After The Evaluation

If your child has DS-ASD, obtaining the diagnosis or label may be a relief of sorts. The addition of ASD brings new questions. From a medical perspective it is important to consider use of medication, particularly in older children, for specific behaviours. This is especially true if these behaviours interfere with learning or socialisation. While there is no cure or remarkably effective treatment for Down syndrome and autistic spectrum, certain “target behaviours” may be responsive to medication. Some of these behaviours include: • • • •

• •

Hyperactivity and poor attention, Irritability and anxiety, Sleep disturbance, E x p l o s i ve b e h a v i o u r s r e s u l t i n g i n aggression/disruption (can sometimes be reduced), Rituals and repetitive behaviours (can sometimes be reduced), and Self-injury (can sometimes be reduced).

As you continue to take care of your child, make a point to take care of yourself and your family—in that order. You have a life and a family to consider. Learn to recognize your own difficulties and be honest with yourself and your spouse about the need for help. Counseling and medication may go a long way in helping you to be at your best, for everyone’s sake. Credit: National Down Syndrome Society (US)

A Magazine By People With Down Syndrome, For People With Down Syndrome.

Practicing with Melbourne Ballet School By Ava Hutchinson

I did a dance with the ballet girls from the Melbourne City Ballet. I was a black swan. Nana, PJ and I went for dinner in Carterton. Then we went to watch the ballet, Alice in Wonderland. I liked the Queen of Hearts.

Down Write Brilliant

Carlos showing his moves at the medical studentsâ€™ ball.

Carlos WOWS Medical Students By Carlos Biggeman One evening in in March, I received an email from a dearfriend, Ruby Wills, who is the Southern Coordinator of Upp Club Dunedin. She had sent me an invitation from The Med Students Association to speak at their Otago University Medical Students Conference. My role was to speak on behalf of people with Down syndrome so it was a challenge to make a PowerPoint presentation and a speech to go with it, because I had to speak for at least 15 minutes. First of all, I had to write a speech talking about my achievements and my experience with doctors, so it meant to choose the right photographs and to start building ap a Power Point presentation. It took me a month to get organised. I was watching some videos on YouTube on how to talk clear and loud and make myself understood, practicing

Down Write Brilliant

my speech in front of a mirror so I can be more comfortable so I can be ready to speak in front of the audience, putting my slides in order so the photos fitted with my speech. And many more details, so when the big day comes I will be well prepared. The big day comes and I was on my way to meet Ruby at the Otago Museum, because the night before we decided to meet there. All of the Med students were already there and I got myself introduced from that day until today. I have made dear friends who I will cherish forever. On Saturday May 25, my friend Ruby started to speak first because she wanted to tell the Med students how she got involved in the role of becoming the Co-coordinator of Upp Club and the wonderful opportunities that this club has to offer. Then she introduced me so I could have my turn to speak. I spoke with such enthusiasm that I made them to applaud me at the end. That night Ruby and I got invited to go to their Gala dinner at the Savoy and we had such a FANTASTIC evening. We had a delicious buffet and we danced until we dropped. There was a professional photographer who took many photographs of us. In other words, I had a wonderful experience. The topic of my speech was about a doctorâ€™s influence in people with Down syndrome lives.

Carlos charming the audience.

I said that one in every eight hundred people is born with Down syndrome; and doctors have to remember some key points if they one day see a baby with Down syndrome and they could have heart conditions, thyroid dysfunctions, vision, hearing, respiratory infections and intestinal problems. Doctors also have to understand that people with Down syndrome are not sick, that it is not a disease and we do not suffer from it. Parents who are receiving the Chat 21 journal and have a baby with Down syndrome please remember to take care of your babyâ€™s health so they can develop better. Also believe in our ability because we do extraordinary things, we can be part of society, we can be part of groups like STRIVE or Upp Club. We can learn and we have different skills, we have big dreams and want to make them come true. We can achieve many things in life if we have the opportunities and you, doctors and parents, can help us to make that big difference. Think about the great effect you have on the lives of people with Down syndrome Remember, Like Michael Jackson song says: Heal the world, make it a better place, for you me and the entire human race.

Down Write Brilliant

Toby's Racing Machine By Rebecca Mauger Toby Wilson is rolling around in his new recumbent trike looking like a mini racing driver. The little boy with Down syndrome has never seen anything like this before The impressive Hase Trets Reh trike looks like a turbo charged baby buggy, but it's a trike. And it's pretty fast. "His first reaction was 'wow'," says mum Nikki Mackenzie, when the trike arrived from Germany last week and the family assembled it. But he was a little bit confused, she says, as his new hot wheels look so different from his usual mode of transport â€” buggy or toddler trike. The trike is designed for children with special needs. It has peddles so Toby can ride the trike himself (or take a break and be pushed with a parent pole) and steering wheel. The bike can extend horizontally to accommodate his growth up to age 10. The trike came with a hefty price tag. Nikki was determined to get it for him.

Down Write Brilliant

"When Toby was diagnosed with Down syndrome three days after he was born, I knew the most important thing would be to get Toby out and about in the community. I believe the more people that know Toby, the more people would understand him, watch out for him as he grows up, and be a part of his community social support network." The Wilsons received a $6903.99 cheque from the Mazda Foundation to purchase a specialised trike. The bike can be attached to an adult's bike and become a trailer. It can fold down for easy travel. Toby has outgrown his buggy and his toddler trike. It was important to Nikki for Toby to be seen, to be social and to keep him active. Toby does not have enough muscle tone or balance for a bicycle and a specialised trike designed for low muscle toned children was the next step. And he didn't want to be carted about in a baby buggy any more, Nikki says, as he's not a baby. He also has a very close bond with his older sister and one of the highlights of his day is to accompany

her to school on his toddler trike. "They adore each other more than I have ever seen between siblings." In August Nikki began her search for a specialised bike via Trikes NZ website. "Thanks to the Mazda Foundation Toby will be enjoying trike riding in the outdoors with his family this summer." Nikki says the best gift you can give a person with a disability is friendliness. She sees people staring at him, and it bugs her. "I tell little kids that it's okay to stare at Toby as long as you do it with a smile." She doesn't want people to feel awkward about him as "a genuine friendly 'hello' really makes Toby happy". "The thing that warms my heart the most as a mum is

when a person who barely knows Toby comes up and has a friendly chat to Toby. I think people forget how a simple gesture of kindness can make a massive difference. Thank you so much to the members of our community who stop, wave and chat to Toby. Thank you to all of you that have taken time to make Toby feel important." Nikki was no stranger to children with special needs. She grew up in Paihia and her best friend's sister had Down syndrome. "I witnessed for over 15 years how a nurturing family, with high enough expectations, and a community spirit can enable an additional needs child to absolutely thrive mentally, emotionally and physically." Copyright Bay of Plenty Times

Me & My Job By Sue Duncan Courtney is 23 and has been working at New World Cambridge for two years where she packs bags on checkout. Originally, she was being funded through the Mainstream Employment funding scheme but that has just finished. This scheme allowed the business to have two years subsidised by the Government while they trained her. That has just finished and she is now employed for three hours a day for four days a week. Although it doesn't seem a lot, it works great for Courtney as she has lots of sports and recreational activities each day as well. When she was interviewed initially they were saying a previous employee with a disability was great with kids, but we knew this would not be the case with Courtney. However, she has been a huge hit with the elderly. This store has quite a few elderly folks who come to the store daily for social contact and this group particularly enjoy her. There are many who will queue to be able to go through Courtney's checkout. She has customers who she dances with, who she hugs and who she gets cheeky with. There is a great group of staff on checkout and they look after her. With the transition from the scheme, I as her Mum had a meeting with the bosses to work out how best to move forward. The owner was very open about saying that at first a couple of staff were quite resistant and were told to pull their heads in.

Down Write Brilliant

Courtney working hard at New World Cambridge.

Apparently there were also a few customers who had issues with Courtney being there. The boss told them there was another supermarket in town they should shop at! Courtney loves her job, is ready to go every day and she is enjoyed by those around her. For me the biggest compliment is when we go to the store after hours and staff and customers alike call out to her or stop to chat...and I don't seem to exist!

From sign to word: One size does not fit all 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 makeup 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-ahalf 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

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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, you can see the number of words for which a child used only sign, compared to the number for which they used both sign and word, and the number for which they had only words.

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.

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 â€˜got the hang ofâ€™ 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

From sign to word: One size does not fit all

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 childâ€™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.

Duncan Small – A Charlotte Gendall looks back at the life of Duncan Small a remarkable man with Down syndrome who left a big legacy in his rural community.

Shepherd, shearer, dog trialist, horseman, bartender and all round man of the land: Duncan Small was a big character around the small town communities of Taihape and Hunterville in the northern Rangitikei. At a recent equestrian competition in Taihape, visitors might have been intrigued by the Duncan

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Small Memorial Jump. The blue and white obstacle featured in the premier ring at the showjumping championships and was also the centre piece of a special class named after the said Duncan. With riders from all over the North Island taking part, I had to ask “Who was Duncan Small?” The answer

man of the land was instantaneous. “You didn’t know Duncan? Everyone knew Duncan!” From talking to his friends at the show, it became clear that their affection for this man was motivated by multiple factors: admiration for his determination, his talent as possibly the only shearer with Down syndrome in the country, and his enthusiasm for life, coupled with the way the unconditional support of a loving family had helped him thrive. Duncan Small was born in the Taihape Maternity Home in June 1970, the first child to Paula and Jimmy. A formal diagnosis of Down syndrome six weeks later made little difference to getting on with life - it was home to the farm. Duncan was out on the horses with his father while still in nappies - “my mate,” says Jimmy – and the youngster was frequently rocked to sleep while sitting in front of the saddle by the paces of Dad’s shepherd’s hack they travelled around the hill country of Pohonui Station. Talking, laughing and gathering friends as he grew, Duncan initially went to school in Taihape and then when the family moved to Hunterville, he attended the local school and later Whanganui IHC and then on to flatting in a supported environment. But truly, Duncan’s heart lay in the country. As a talented teen, in 1987 he and Paula travelled to the USA as part of the New Zealand Special Olympics squad, and three years of training paid off with multiple medals. However, it seems taking the boy out of the country couldn’t take the country out of the boy. The 17-year-old rang Jimmy from the States. “Dad, I got two golds and two bronze. I finished Olympics, I’m coming home to go docking.” Retiring from international sport, Duncan threw his heart into rural life. He was given a former pack horse called Scooby, and now had the freedom to get around the steep country independently. A series of dogs followed: Bacon, Scruff and Sam. Sam was his favourite partner, and Duncan was hugely proud of their victory in the Maiden Huntaway

Duncan Small – A man of the land

Baby Duncan with mum Barbara.

at Poukiore Dog Trials. At about this time, the Man from Snowy River came out as a movie which Duncan loved dearly. Styling himself as Banjo Patterson’s hero, he was the selfstyled “Man from Pohonui”. Clearly, Duncan Small knew his own mind. For one birthday, Paula and Jimmy asked Duncan what he wanted. The answer was a bar. A bar? “A bar. Like a pub.” A bar was installed at Pohonui with all the fancy bits: nip pourer, mirrors and so forth. Duncan loved to entertain and his gregarious manner made him a natural at hospitality, always topping

The Small siblings, from left to right, Rachael, Ginny, Dunc, Rebecca.

everyone’s glass up before it was empty so no one could go home early. In 1999, Jimmy and Duncan moved to Otiwhiti Station where they spent five very happy years and then in 2004, Jimmy placed the sum for a house deposit in Duncan’s account. Duncan wrote the cheque and purchased “Dunc’s Place” in the Pukeori Valley where Jimmy still lives. Rural life was Duncan’s life: he loved travelling to shows and hunting events with Jimmy in the horse truck. He competed in the shepherd’s classes at sports meetings, watching his dad showjump while helping out with the competitions. When the partnership with Scooby ended, it became difficult to find another horse so perfectly suited to Duncan. Recognising his love of their sport, the Rangitikei Hunt appointed him as their non-riding honorary kennels man, a role Duncan took extremely seriously. Wearing his committee badge, he was constantly on hand to release and truck up the hounds on farms all over the district. Shearing sheep is one of the most gruelling occupations around but always strong and fit from gymnastics, Duncan made the task look easy and wasn’t just for show – he notched up a best crutching tally of 200 in a day.

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As a fastidious homemaker with skills learnt from his mum Paula, a big brother to Ginny, Rachael and the late Rebecca, it’s clear Duncan Small lived a full and happy life. When the onset of dementia revealed itself, he continued to be lovingly cared for at home by Jimmy and the family until called up to a final muster last year at the age of 47. Which brings us on to a hot summer’s day at the Taihape championships six months later, on the sportsground Duncan knew, the arena surrounded by burnt pasture, steep hills and sheep. In years to come, the Duncan Small Memorial Jump will continue to be contested here and at other venues around the district. Perhaps other people will ask “what’s that all about?” It would be their privilege to learn about a man who combined the very best qualities of character, friendship and loyalty. I wish I’d met him. AUTHOR’S NOTE: Charlotte Gendall wrote this article after speaking to people who knew Duncan Small, after talking to his dad Jimmy, and with the benefit of reading a tribute from his sisters Ginny and Rachael, some of which she has adapted for this article.

Duncan on the beach with dad Jimmy and dog Anna.

Duncan was a strong young man who could hold his own.

Shearing was one of the many skills Duncan learned, and he was able to crutch up to 200 sheep in one day.

Duncan Small â€“ A man of the land

Keratoconus screening programme saved our son’s eyesight By Karen Nyenkamp

the Milford Eye Clinic to discuss Max’s results and she scheduled Max to have a procedure called Crosslinking. It is basically soaking his corneas in Riboflavin for 30 minutes and then hitting them with a UV light for 20 minutes. This changes the cells in the cornea so that they settle down and don’t become cone shaped. As you can imagine this would be very difficult for Max to do without going under general anaesthesia. We visited the Manukau Super Clinic in January to have Max’s procedure done by Dr Altaie and so far it looks like it is working. He goes back every three months for checkups to make sure. If it wasn’t for the screening process done, we might not have caught it at such an early stage as most optometrists do not have to equipment necessary to checking for Keratoconus and Max would have had a more invasive procedure done. If left too late a total cornea replacement would be necessary or blindness occurs. My husband and I own a company that supplies optical equipment to optometrists and hospitals. We have always supported the Special Olympics Healthy Eyes programme by donating the equipment they use during the National games. At the last Special Olympics National games held in Wellington in November 2017, the University of Auckland did a special screening for people with Down syndrome to test for Keratoconus. We supplied the machine they used for this screening process. As you may have read in earlier editions of CHAT 21, the University of Auckland is doing research paper to see if people with DS are more susceptible to getting it. Our son Max was screened for it then and he did not show any signs of it. However, they did determine that there was a remarkably higher instance of people with DS having it than the general population. They are continuing their research now to see just how prevalent it is in the DS community. They set up another screening a year later in November 2018 at the Pullman Park Special Olympics Basketball ribbon day. Max was screened again at this event and unfortunately this time he did show signs of Keratoconus. We immediately contacted Dr Rasha Altaie at

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Our people

The Minehan siblings hanging out with Ted the horse.

Alex Mulholland rather happy about holding his new brother

Lily Curtin at 12 months on her first family holiday in Christchurch

Liam for the first time.

at the Margaret Mahy playground.

Joe Payton: Man on a mission

Joe Payton has good reason to celebrate his 40th birthday this year. Joe completed Run Away: Hawke’s Bay International Marathon over the weekend and succeeded in more ways than one. Joe was running for his son, Otis, who turns 10 this year and has Down syndrome. Otis, like many kids with Down syndrome, faced an uphill battle learning to communicate. A combination of low muscle tone, a larger tongue inside a smaller oral cavity, and intellectual developmental delay, make it much harder for kids with Down syndrome to learn to speak. So, in 2011 when Otis was only an infant, the Payton whānau became members of the UpsideDowns Education Trust, a charity that provides speech language therapy for kids with Down syndrome. “While I was out running one day, I thought, I turn 40 this year and Otis turns 10, so it would be good to do something to celebrate this 'milestone'. I thought it would be a good idea to raise money for the UpsideDowns Education Trust as they have supported Otis with speech language therapy over the years,” said Joe. He set himself the huge fundraising goal of $10,000,

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and to inspire donors to ‘go big’ themselves, aimed to complete the marathon in under 3 hours, something fewer than 4% of male runners achieve. “It all seemed pretty simple, train hard and run as hard as I could and I was reasonably confident I could get under the 3-hour mark, but about 5 weeks into a 12-week training programme, my left calf muscle started tightening up and I would get minor tears which meant I couldn’t run,” said Joe. Only a week out, Joe was fearing the worst but got the tip from his brother-in-law to roll a golf ball under his foot which released all the tension in his calves. “I felt like I might be able to actually run it,” said Joe. “I didn’t get under 3hrs, but I couldn’t have gone any faster. It’s been an awesome experience and I hope the money raised has a real impact on the kids that need speech language therapy and their families,” said Joe who raised over $13,000 for kids like Otis. “That’s enough to provide speech therapy for a child with Down syndrome for their whole primary school education. It’s an extraordinary achievement for an individual fundraiser – by far the biggest I’ve seen in my time with UpsideDowns,” says Sarah PatersonHamlin, Operations Manager of UpsideDowns.

Learning crumb by crumb In her second article on education, Margi Leech focuses on taking tiny steps in the earliest stages of teaching your child. Most parents and teachers have discovered that what they do for children with learning difficulties works for all children. This article does not intend to be the final note on learning, or your child, but rather an introduction to approaches and strategies that have had success internationally. Keep in mind that not all children learn the same way. You may need to try different approaches. What does work, is taking tiny steps. How do you eat a chocolate cake? The whole lot at once? No, piece by piece. Children with Down syndrome learn ‘crumb by crumb’. What is learning? There are many theorists who have written about this over the years, but simply put: A memory journey of putting together ideas and making connections between them to solve problems. When does learning begin? Before we are born. We can hear, feel, be aware of emotions and see light. We arrive knowing about communication. What about ‘learning’? “All children can flourish and enjoy learning when the environment is safe with the right supports and framework or pathway to structure and organize their thinking,” says Neil MacKay in Total Teaching (SEN Books). Our children are NOT learning disabled. They are not an educational disaster. Expect that your child will learn. Our children are not sentenced to a life of being ‘taken care of’, being excluded and not making a contribution to our community. Be careful, because their education will reflect whatever values you hold. You will have to sort these out before you enter the child care, early childhood centre, and school settings.

Learning crumb by crumb

And, you will have to educate/remind all those who you meet to uphold your values if they don’t already have them. Be strong! We know that there is a huge range of abilities of the entire population, same too with the Down syndrome population. The impact of other challenges should not be overlooked. Some of our children will have aspects of Autism, dyslexia, dyspraxia, ADHD, OCD, memory and organisational difficulties. Explore these differences so that you are aware of them and can support your child. A great book to help you is: The Parent’s Guide to Specific Learning Difficulties by Veronica Bidwell. There are copies to borrow in the IHC library. The best thing you can do for all your children of all ages is to build up their ‘working memory’. Working memory is necessary for all learning. It is the memory that is seen when your mum is trying to call your name but calls everyone else’s first! This is now being researched and found to be very significant. The challenges to using our working memory are: • • • • • •

Distractions and noise Too many requirements Having to think about the activity AND concentrate on instructions Instructions in sequence Too many words to listen to Too much to look at

Best tips: Listen, look, do, know! Touch it, see it, hear it, got it! •

•

• •

•

Write down your instructions on a sticky note and point to them while explaining what to do. Give them something to DO. We learn best by doing. It’s known as kinaesthetic learning. Give time to think Repeat it exactly, immediately and later until confident. (Our Emily took 3 weeks to learn somethings.) Whakarongo, Titiro! Mahia kia mau!

Approaches • • • • • • •

•

Education is all about relationships. Build a positive learning journey and fun times together. Use multi-sensory activities to strengthen memory – seeing, doing, touching… Use art, music, drama, play, games, movement Be creative and adventurous Keep it short – 1 minute or even less to start with If you find the task too difficult, think about the little steps that together complete the task. Remember how you learned to drive a car. You probably didn’t drive down the motorway on the first day! Finish with success always! You will both want to do it again later. I found the best time was as Emily was finishing her breakfast. I brought to the table what she was going to do on a tray already set up the night before.

Strategies • • • • •

Copying Matching Sorting Exploring relationships (bigger, smaller…) and positions (behind, inside…) Social stories

Start when your child is 18 months. The UK early intervention team starts working with children at 18 months. The activities they do are around speech and language, reasoning, problem-solving to find, fix, match, sequence and sort. Look at the great supports on: https://www.portage.org.uk/support/ resources/parent-list/317 • • • •

Reading books together Talking about pictures in books, newspapers, magazines, social media Singing rhymes and songs Cultural music activities (poi, haka, hula…)

Begin the activities below from 3 or 4 years of age. Here are websites to explore with lots of fun activities: • • •

Little Bins for Little Hands Fun Learning For Kids Oxford Owl

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Reading, spelling and writing

Many people have studied how our children learn and there are some great programmes available. Teach letter sounds and names, writing his/her name with slim chalk, then pencil. Explore these programmes: Handwriting Without Tears – preschool and school – book and app activities. See and Learn and all the apps and programmes from Down Syndrome Educational Letters and Sounds – children learn to read and spell at the same time. Mona McNee has a son with Down syndrome. She taught him using phonics. Her programme is now used throughout the UK with support from the government (http://www.lettersand-sounds.com/) and is available for free from her website: http://www.phonics4free.org/home ADSA also has some of the resources in the library and are available through me. Margi.leech@gmail.com Use readers that have been written to help children learn to read. These are decodable readers. You can download these from Reading A-Z. There are also Fitzroy Readers. Also choose readers that help children enjoy the language of reading. These readers are: PM Readers available from: Cengage. Begin at the Magenta level. Ready to Read from schools (Jodi Wickstead, one of our mums is the graphic designer!) Joy Allcock resources Jolly Phonics The Learning Staircase

Maths

This is more difficult for children with Down Syndrome because so much is abstract and has special language. Remember that Maths is all about patterns and relationships which our children are good at. Rhonda Faragher’s research on people with Down syndrome and their mathematical thinking showed that a majority have dyscalculia (the maths version of dyslexia) - their own version. Create patterns with objects you find on the beach, in the park, in the kitchen, with food on your plate! You can download great beginning activities from www.numicon.co.nz - Resources and Free Downloads for patterning, sequencing and counting. Counting – is really hard. There are five thinking processes to remember and coordinate when counting. Some children may not learn for years or never count, but they can still learn maths which is more than counting. Follow these steps to begin with:

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Hold a small block or object in one hand and another in the other hand at the same time. Place one small block or object beside the other. Pair an object with another the same. Eg., shoe and shoe, spoon and spoon. Roll forwards and backwards under the hand a small cylinder – a pill container or cotton reel Pile then a tower of blocks or stack of plates or cups. Duplo is good for this. Match another – find the same. Join two, then three blocks together. Lego or Snap Cubes work well. Draw over a thick straight line with a finger, from left to write. Draw over a thick straight line with a finger, from top to bottom. Place a block on an outline of a block, a cylinder on a circle, an object on a circle. Place blocks or objects into a pattern line; first horizontal, then vertical, and then diagonal. Place blocks or objects into a pattern – Numicon patterns are so good for this because then the children learn what a group is and that a group has a name. Then sequence the patterns.

Learning crumb by crumb

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Recite and count objects into egg cartons, along a line, into a drawer, onto the table, out of the bath… Programme a small toy or robot to move forwards and backwards. A Chess board works well to guide this.

You can find products at Switch Learning, Sensory Corner and Edushop.

Enjoy this precious time together! Next time you can read about activities and learning in the primary school years.

IHC library expands resources IHC Library is very pleased to announce that a collection of resources belonging to the Wellington Down Syndrome Association is being managed by the IHC Library and is available for all library members to borrow. Included in that collection are several See and Learn kits that we have been asked for in the past and are now have available. “See and Learn Language and Reading is designed to teach children to understand and use spoken language from first words to early grammar and simple sentences. It also introduces children to reading first sight words, learning letter-sounds and using phonics for reading.” – from the See and Learn website Other recent additions are-

Off to a good start: a behaviourally-based model for teaching children with Down syndrome by Emily A.

Jones "The authors [of this book] share the compelling research about the benefits of using ABA methods with children with Down syndrome, describe ABA principles and procedures, and provide the ABA-based curriculum they’ve used for nearly 20 years to successfully teach infants through kindergarteners with Down syndrome. With these books, readers will learn ABA practices for teaching children the all-important foundational skills in motor, social-communication, cognitive, and self-care development." – Publisher’s website.

Census by Jesse Ball

“A powerful and moving new novel from an awardwinning, acclaimed author: in the wake of a devastating revelation, a father and son journey north across a tapestry of towns. When a widower receives notice from a doctor that he doesn’t have long left to live, he is struck by the question of who will care

CHAT 21 | Issue 78, Winter 2019

for his adult son—a son whom he fiercely loves, a boy with Down syndrome. With no recourse in mind, and with a desire to see the country on one last trip, the man signs up as a census taker for a mysterious governmental bureau and leaves town with his son.” – Goodreads

A major adjustment: how a remarkable child became a remarkable adult by Andy

Merriman "Sarah Merriman is just like any other urbane young woman in her twenties... She has a job in a Central London hotel, a boyfriend, commutes to work on the Tube, eats out, goes to films and theatre... This is all the more remarkable (though not to her) because Sarah was born with Down's Syndrome. Her parents having no prior inkling, it came as a huge shock to them that they now had a daughter with a disability. In 1999 her father Andy wrote a frank and moving book, A Minor Adjustment, about the challenge of her early years. The national publicity it gained saw it become a treasured resource for other families on a similar journey. Now he follows up with the inspirational story of how his daughter, whose favourite expression is `I love my life', has grown up, featured on Michel Roux's compelling Kitchen Impossible series, and is making a life of her own at a time when pre-natal testing is threatening the very existence of people with Down's syndrome. Sarah has contributed throughout." - BOOK JACKET Please contact your library team (Phil, Ros, Ann and Michael) on 0800 442 442, email us at librarian@ihc.org.nz or visit the online catalogue at https://ihc.mykoha.co.nz/

You can watch our library video at https://www. youtube.com/watch?v=AunmBYTIZTM

NZDSA notices Don't forget the NZDSA Ball

Announcing the NZDSA AGM

I hope you will join us at the NZDSA Ball which will be held on the 2nd November at the Remuera Club in Auckland. It will be an evening of fun with entertainment by the very popular The Mermaid Dance Band, featuring ABBA Heaven. See the back page for more details. You can contact Linda if you want to purchase tickets, 0800 693 725 press 2 or email nzdsai@xtra.co.nz

Date: Saturday the 19th October 2019 Venue: Conference Room at the Chancellor Motor Lodge, 131 Fitzherbert Avenue, Palmerston North Time: 5pm RSVP: By Monday 23rd September 2019 to Linda te Kaat 0800 693 724 press 2 or nzdsai@xtra.co.nz Please indicate if you have special dietary requirements

Rose Award

You will note that no one was nominated for a Rose Award in this edition of CHAT 21. So, I would like to encourage you to nominate a deserving individual or organisation for the next edition of CHAT 21. The Rose Awards provide the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community. Please email nzdsi@extra.co.nz your nominations for an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”. We will acknowledge the person in CHAT 21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

Top 10 Maths Applications

The NZDSA would like to know your favourite apps for maths. Please email your list to Jess at hello@nzdsa.org.nz

NZDSA Treasurer Position

The position of Treasurer has come up for election. Please see enclosed nomination flyer for details. If you have any queries please contact Linda 0800 693 724 ext 2.

Thanks

Thanks to the following funders and sponsors who have made donations to the NZDSA this financial year: • • • • • • • • • • • • • •

Joyce Fisher Charitable Trust Lottery Minister’s Discretionary Fund NZ Lottery Grants Board Holdsworth Charitable Trust Thomas George Maccarthy Trust Pub Charity Southern Stars Mana Whaikaha COGS Christchurch COGS Hamilton COGS Manukau COGS Manawatū/Horowhenua COGS Central Otago COGS Whangārei

The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories. Please check it out at facebook.com/NZDSA

NZDSA notices

NZDSA Committee

Contact directory

New Zealand Down Syndrome Association PO Box 4142, Shortland Street Auckland, 1140 0800 693 724

Gwen Matchitt

Kim Porthouse

Angela Hawke

Diane Burnett

President

Zone 1 Representative

Wellington & Wairarapa

Northland

Northland/Auckland

021 297 0298

027 246 0160

022 034 6475

president@nzdsa.org.nz

northland@nzdsa.org.nz

auckland@nzdsa.org.nz

Treasurer

Kerry Ryan

Shelley Waters

Zone 3 Representative

Zone 4 Representative

Zone 5 Representative

Zone 6 Representative

Whanganui, Manawatū, Gisborne

Wellington & Wairarapa

Ashburton & all areas above

All areas below Ashburton

& Hawkes Bay

021 108 9505

021 046 0482

027 627 3069

027 356 3229

zone4@nzdsa.org.nz

zone5@nzdsa.org.nz

zone6@nzdsa.org.nz

Vice President Zone 2 Representative Waikato, BOP & Taranaki 027 244 4543 zone2@nzdsa.org.nz

Geraldine Whatnell Averill Glew

zone3@nzdsa.org.nz

NZDSA Staff

Linda te Kaat

National Executive Officer

National Administrator

0800 693 724 ext. 1

0800 693 724 ext. 2

neo@nzdsa.org.nz

nzdsai@xtra.co.nz

Regional Liaison Officers

Jess Waters

Zandra Vaccarino

Christel van Baalen

Donna Higgs-Herrick

Sandra Slattery

Auckland Community

Canterbury Community

Taranaki Community

Liaison Officer

09 527 0060

021 208 8203

027 604 5786

clo@adsa.org.nz

cdsainc@gmail.com

taranakidownsyndrome@gmail.com

NZDSA Membership

Membership charges are as follows: $30 one year Financial membership fee, $50 one year Affiliate membership fee, $15 one year Self-advocacy membership fee. To obtain full details and a membership form please either email – nzdsai@xtra.co.nz or telephone 0800 693 724 ext 2.

Database Updates

The NZDSA would like to update their database. If your details need updating please contact us either by email – nzdsai@xtra.co.nz or telephone 0800 693 724 ext 2.

CHAT 21 | Issue 78, Winter 2019

Social Media and Information Officer 021 032 8539 hello@nzdsa.org.nz

Daniel te Kaat Graphic Designer 021 22 333 93 daniel@slaughterhaus.co.nz

Coen Lammers CHAT 21 Editor 027 730 239 editor@nzdsa.org.nz

Donations

The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you are able to make a donation please either send a cheque to us at P O Box 4142, Shortland St, Auckland, 1140 or direct credit to ASB 123073 0090784 00 using your surname as reference. If you require a receipt please email us to let us know you have made a donation via internet banking by telephoning 0800 693 724 extension 2 or emailing nzdsai@xtra.co.nz. If sending us a cheque please include your address so a receipt can be posted to you.

Me and my pet Greta & horses Our Greta is 33. She has had pets in the past but now the only animals she has regular contact with are the lovely horses at Tauranga RDA.

Heidi & Noodle This is Heidi aged 6 with our family pet Noodle who is now 11. These two girls have a very special bond, Heidi is Noodle's favourite family member and loves to sleep on her bed. Heidi gives her lots of love and attention and enjoys feeding her.

Toby & Bob This is Toby's sister's dog. His name is Bob and we got him from the SPCA. Bob is 7-years-old and is a Boarder Collie, Labrador, Grey Hound cross. Toby loves to hug Bob he has just learnt to play fetch with Bob and loves throwing the ball to him.

My and my pet

Entertainment – The Mermaids Dance Band featuring ABBA Heaven. They perform all around NZ to sold out audiences. This event is open to anyone 15 and over but anyone under 18 must be accompanied by an adult. We encourage families & friends to attend. There is no supervision on the night.

WHERE Remuera Club 27-33 Ohinerau St, Remuera, Auckland

WHEN 2 November 2019 7.30pm – 11.00pm

PAYMENT • • •

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Payment must be made to ASB 123073 0090784 03 Use your surname as reference. To receive your tickets you MUST email nzdsai@xtra.co.nz to advise your address and number of tickets required. No ticket no entry. OR telephone your details to 0800 693 724 ext. 2 – use this number for any queries you may have as well.

PRICE Early bird price $30 per person until 1 August 2019. After this date prices will be $40 per person as they will then be advertised to the public. Ticket price is for entry only. Food and drinks can be purchased on the night. Tickets are limited so get in quickly.