CHAT 21
ISSUE 91, Spring 2022 ISSN 2744-4635 A journal about & for the New Zealand Down syndrome community.
Editorial – Spring 2022
I know I haven’t been at this for very long, but this has definitely been my favourite issue to put together so far. What a joy to speak to siblings of people with Down syndrome from ages 5 to 75, and to speak to people with Down syndrome about their siblings. The love and affection is palpable through the page, screen, phone, and zoom connection. I’ve never found it easier to encourage anyone to talk about any subject!
As I believe it says a few times in this edition, our longest relationships in life are likely to be with a sibling. 82% of us have at least one, and although these relationships can take myriad forms, there is simply nothing quite like them. My own siblings are significantly older than me (my Nana would affectionately call our shared position in the family as the ‘afterthought’ – I tend to go with pōtiki). I don’t remember the more typical fights and shared experiences that my own two sons now enjoy. What I do recall, is the love and protection that helped all of us through some tough times, and the shared humour and passions that keep us growing closer now that we’re adults.
Parenting siblings is a different experience altogether, but also one of immense joy. It was love at first sight for my boys, and although being a referee is definitely more familiar than perhaps it was for Kim (see President’s Pen!), seeing their closeness and dedication to each other is a daily gift. Based on the many wonderful
contributions you’ll find in this edition, these experiences are common to many. Although the relationships represented are completely individual, you will notice a lot of the same sentiments come up again and again, and the thoughts and feelings of particular stages of life matching the recollections from those who have already passed through them.
There are a lot of stereotypes out there, both positive and negative, about the siblings of people with Down syndrome. This is one reason why it’s important to include some of the research on this topic as well as a diverse range of personal stories. What they both indicate is that some of these stereotypes might be true – higher levels of emotional intelligence, stronger empathy, and significant earlier exposure to ideas of advocacy and raising one’s voice to injustice. Of course, these will be trends and tendencies only, and every sibling is just as individual as each person with Down syndrome.
As my own experiences of being a sister and a Mum have shown me, there really is no blueprint when it comes to sibling relationships. Age gaps, genders, personalities, early experiences, cultural expectations… the list of variables is endless! Even when you narrow it down to having a sibling with Down syndrome, something only a few thousand Kiwis get to claim. I hope you enjoy this loving and varied selection of sibling experiences.
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Page 3 Contents 4 Siblings of people with Down syndrome – what does the research tell us? 8 Covid-19 membership survey of parents & whānau of people with Down syndrome – results part 2 11 Keratoconus in Down syndrome KIND 21 Project 12 Listening to siblings 14 The art of cooking & the cooking up of art 16 IHC Art Awards 2022 17 Green Dreams – Tom’s Plants 18 Interview with Blake, age 5 19 My sister 20 Our sister Essie 21 My sister 22 My brother 23 My brothers 24 Meet the Gaede Sisters 26 Sibling Appreciation from a Person with Down Syndrome 27 Kelsey & Dan 28 Matt & Tom — Them & Their Job 30 Shona & Roderick: a lifelong relationship 34 The Bards of STRIVE 35 Poetry Page… 36 NEO Notes 40 President’s Pen 42 Music Therapy — “Putting the pieces together” 44 IHC Library 47 Notices
Siblings of people with Down syndrome – what does the research tell us?
By Sarah Paterson-Hamlin
For over 80% of the New Zealand population, our relationships with our siblings will be the longest lasting ones we have, taking us from childhood through adolescence all the way to old age, if we’re lucky. One of the earliest ways we identify ourselves is through our position in our families – are we an only child, the youngest, eldest, or middle sibling, do we come from a small family, are we the only girl or boy, and so on. Sibling relationships of all kinds have been studied by researchers aiming to find out more about these crucial relationships, and the siblings of people with Down syndrome are no different.
Crash Course on Down Syndrome for Brothers and Sisters”, and spearheading the Down Syndrome Workshops for Siblings initiative, among many other academic and community achievements.
In 2011, Skotko and Levine, alongside Richard Goldstein of the Department of Psychological Oncology, conducted a mammoth three-fold research project into the relationships of families that had a member with Down syndrome. The first study evaluated responses from over 2,000 parents and guardians, and found, perhaps unsurprisingly, that 99% of respondents loved their child with Down syndrome, and 79% found their outlook on life was more positive because of their child. Only 4% reported regretting having their child.
The second study asked similar questions of siblings of people with Down syndrome. Those aged 12 and older reported the following results (left).
Tellingly, when people with Down syndrome were surveyed in the third and final tranche of the research, their answers roughly mirrored the responses of guardians and siblings. 96-99% of people with Down syndrome liked their lives, how they looked, and who they were, with only 4% expressing sadness about their life. Advice from siblings to future parents
Feelings towards siblings with Down syndrome
When it comes to research into the experiences of siblings of people with Down syndrome, Brian Skotko and Susan Levine of Massachusetts, USA, have been leading the charge for many years now, co-authoring “Fasten Your Seatbelt:” A
The background context to this research was previous survey-based research regarding diagnosis of Down syndrome in the USA which found that parents were being given prenatal diagnoses that ranged from positive and helpful to inaccurate and offensive – with many things in between. This is why the researchers also asked siblings what they would tell expecting parents of a child with Down syndrome:
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“Siblings… most often conveyed that the experience would be joyful and rewarding, though many also said there would be challenging moments.”
Brian Skotko is himself a sibling to a woman with Down syndrome, and today is Director of the Down Syndrome Research Program at Massachusetts General Hospital and an Associate Professor at Harvard Medical School.
“Brothers and sisters of those with Down syndrome tend to be compassionate, understanding, wonderful people” he says. “But we also know that being the brother or sister of someone with Down syndrome can have its tough times too!”
When it comes to the challenges, the team’s research found that the most common issue siblings had was that they felt their parents spent too much time with their sibling with Down syndrome. This perception appears to decrease quite significantly as siblings age, and is always a minority view, but remains the most common negative feeling associated with being a sibling Benefits and challenges of being a sibling The research undertaken in 2011 involved open-ended questions of siblings regarding what they felt they had learned as a result of being a sibling of someone with Down syndrome.
“The most frequently cited lesson was an enhanced perspective on life—that life was good in many ways (e.g., ‘‘Life isn’t perfect, but that’s the best part of life’’; ‘‘Dance when the music plays’’; ‘‘I’ve learned from an early age to appreciate the small things and not take for granted anything’’).
“They have learned that everyone has talents (e.g., ‘‘I’ve learned that a role model does not need to be a superhero, it can be your brother with Down syndrome’’;
‘‘Everyone in the world has potential’’; ‘‘He gives me a sense of peace and comfort I could not get anywhere else’’).
“From their brothers and sisters with DS, they also learned that hard work pays off (e.g., ‘‘My brother never gives up and never stops trying’’; ‘‘He showed me how to push yourself to achieve a goal no matter how hard or impossible’’).
“Yet, siblings also realized that life can be cruel at times (e.g., ‘‘I’ve learned that life isn’t fair’’; ‘‘Words can cut like a sword and also make them feel like they are on top of the world’’; Skotko et al. (2011).
In Manchester, UK, a longitudinal study led by Cliff Cunningham beginning in 1973 and continuing into the 1990s, examined the family dynamics of people with Down syndrome, including siblings. This study found that a majority of parents reported increased academic achievement and prosocial behaviours among their children without Down syndrome as a result of their sibling. However, they also reported reduced opportunities for family leisure time.
This study identified 20% of the sibling population as showing signs of “poorer adaptation”. Crucially, they linked these findings to the wider family context and reported the following finding: “siblings are not at risk if there are sufficient resources to cope with such behaviour - for example the use of the social networks and support by both parents. They take their view of the sibling with Down syndrome from their parents.” Cunningham (1996).
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I might be biased, but I believe this is an immensely strong argument for the role of organisations such as Down Syndrome Associations and UpsideDowns for the wellbeing of not only people with Down syndrome but also their wider whānau. As with the US study, however, the main finding was of “positive adaptation” among siblings:
“Around 80% of the siblings stated they had a positive relationship with their parents and their sibling with Down syndrome and a positive or neutral effect of having a brother or sister with Down syndrome. They also had positive perceptions of their own self-worth. 95% were actively involved in helping roles with their sibling. There was no indication of any detrimental effect and, in fact, the helping role was more strongly associated with positive relationships with their sibling with Down syndrome. Sixty percent felt they did not take on more household responsibility than their peers whilst 21% felt they did more and 19% felt they did the same amount.”
A study by researchers in France, Lemoine and Schneider of the Université de Rennes, was released just this year, and provides some excellent insights into the long-term effects of having a sibling with Down syndrome. These two researchers had previously undertaken work in 2014 which established that “levels of personal fulfilment were greater for people with DS, their siblings, and their parents when the person with DS lived in circumstances that gave him or her more autonomy” such as employment or independent living, both supported and unsupported.
Roles and relationships
The 2022 study interviewed the adult siblings of people with Down syndrome, ranges in age from 18 to over 80, and investigated their perceptions of their childhood and adolescent relationships with their siblings and parents. The researchers were interested in the roles and relationships of siblings on a backdrop of increased life expectancy of people with Down syndrome. Now that many children with Down syndrome can be expected to outlive their parents, the researchers argue, more care and attention must be taken to involve siblings in family decisionmaking. They cite earlier research from Burke et al (2012) which: “noted that brothers and sisters expect they will have to protect their siblings with [intellectual disability] but do not feel prepared to do so and lack information about the relevant legal and financial provisions.” Lemoine and Schneider (2022).
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Lemoine and Schneider remind us that “sibling relationships are among the most durable relationships people with disabilities have – they are generally much stronger than their relationships with educators, service providers, and sometimes even their parents.”
The researchers concluded that having a sibling with Down syndrome did not negatively impact on family relationships, and that overall “respondents’ evaluations of their childhood and adolescent relationships with their sibling with DS tended to be (very) positive” and that “growing up with a sibling with Down syndrome can be a rewarding life experience.” However, they also provide some helpful conclusions for whānau looking to ensure their relationships are strong going forward.
For example, the role of gender can be significant. As with any caregiving role in our society, more responsibility and expectations are placed on female family members. The researchers here drew on previous work with family members of people with other intellectual disabilities as well as Down syndrome: “The expectations placed on women, and the resulting constraints on their personal lives (perhaps associated with a lack of recognition), may lead to greater tensions in their relationships with their parents.” (Lemoine and Schneider, 2022). They also concluded that their research, as well as other work in this field, demonstrated a paucity of provisions for siblings in social and health services: “Many researchers have stressed the need for all immediate family members to be involved in making important decisions... But it is also essential for siblings to be included the rest of the time.” (ibid).
Conclusion
In general, it would appear that relationships among people with Down syndrome and their siblings are not only positive but more likely to be so than in the general population. Although relationships develop more nuance and variety as we age, it would appear that, when parents are well-supported, close bonds are overwhelmingly likely to remain in place for people with Down syndrome and their siblings.
Helpful takeaways from the research for parents, whānau, and wider support networks include ensuring that siblings of a child with Down syndrome are not being treated differently because of their gender, particularly when it comes to caregiving roles; to involve siblings in an age-appropriate manner in the care of their sibling, including significant decisionmaking and planning for the future; in all likelihood, the experience of having a sibling with Down syndrome will not only not have a detrimental effect, it will lead to stronger emotional intelligence and pro-social behaviours, almost certainly creating a lasting, close, and positive bond between people with Down syndrome and their siblings at all stages of life.
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Covid-19 membership survey of parents & whānau of people with Down syndrome – results part 2
By Sarah Paterson-Hamlin and Zandra Vaccarino
In early 2021, the NZDSA wanted to undergo a stocktake so we could understand how our members were experiencing COVID-19. The information gleaned shaped how we could support our community as well as ensuring that our systemic advocacy was relevant to the needs of our community. Omicron has had significant impact in New Zealand, and while we had some feedback we thought it would be timely to do another survey so that we have a clearer understanding of how parents, whānau, and people with Down syndrome were experiencing the Omicron environment. The stories you shared and your feedback from the survey will ensure that the NZDSA can effectively represent the Down syndrome community when we advocate to various Government Ministries and Providers. This is the second part of the results write-up of this survey. The first part is available in our Winter 2022 edition which covered who the respondents were, support and services received, and vaccination.
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The experience of COVID-19 (Omicron) for people with Down syndrome
Of those surveyed, 82% reported that their child with Down syndrome had NOT had the Omicron variant of COVID-19. Of those whose child did contract this variant of COVID-19, all whānau reported isolating together in the home, and that it was immediately decided that to isolate from each other within the home would be impractical. Several reported that the whole family got sick at the same time in any case, and so there was never a question of isolating together.
One family reported: “He didn’t become unwell. It was just like being in lockdown. Not a major.”
“We just stayed home as we all got it together.” “A family member [slept] in their room every night for fear of a reaction and rapid worsening, that would not otherwise be detected.”
Although just over half did become unwell while isolating, it was generally with less severe symptoms, and the most common response was that no symptoms were detected at all. This is in pleasing contrast to international research on the impact of the earlier COVID-19 variants, which disproportionately led to severe impacts for people with Down syndrome.
Sources of information about COVID-19
The vast majority of respondents (81%) felt that they recieved the information they needed, when they needed it during the Omicron outbreak. Sources of information were varied, and it is notable 83% of respondants recieved information from at least one source.
Wellbeing during the Omicron lockdown
Although the graded responses to questions about wellbeing during the outbreak were generally more weighted towards the positive side, the written responses are much more mixed, with many reporting stress, anxiety, and isolation – at odds with the numbers in the graph. However, accompanying these reports are statements of understanding the need for the health measures, and acceptance that it was a collective experience, which may explain the more positive wellbeing scores.
“It continues to be something we manage positively to stay safe, but we are no more impacted than anyone else who listens to and follows good advice”
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There is a direct correlation with the age of children, with parents of older children utilising words like “restful”, “minimal”, “nice to slow down”, in contrast to words such as “stressful”, “anxiety-inducing”, “stretched”, and “hectic” making frequent appearances among those with younger families.
“Very stressful and scary. Hard to go through endless lockdowns particulalry the 15.2 week Auckland one”
“It was very stressful trying to manage her education and the other parts of our lives”
“It was mostly restful, but hard to explain all the reasoning to my child with Down syndrome”
“It has been a very difficult and isolating experience”
“Extremely isolating and lonely”
“Lockdown was hectic, trying to work, but also trying to keep family happy and supported without the usual supports and caregivers”
“Quite significant stress and mental anguish not knowing how the pandemic would pan out”.
In terms of the impact on respondents’ children with Down syndrome, answers were again very mixed, ranging from lockdowns resulting in diagnoses of depression and anxiety, to those whose children were unaffected by the experience, and have chosen to adapt their lives subsequently to incorporate some of the developments of lockdowns. Many reported they were unhappy with the increased screen time their children had. In terms of the use of zoom, there was again a broad spectrum ranging from gratitude that more options were now available for communication, education, therapies, and services, to expressions of being very frustrated and fatigued by zoom.
“Time spent away from peers and ECE learning experiences is a negative, but her health is our priority”
“She was actually quite depressed for about 4-6 weeks, and didn’t want to engage in anything at all. As time went on we were able to overcome that - but with very little external supports in place.”
“Not really apparent but could tell losing his routine affected him significantly and lack of being able to go out. Non-verbal and generally withdrawn anyway. Needed stimulation-more than I could provide and he had zero understanding of what was going on with the pandemic and why we had to stay home all the time.”
“He has coped well. It is difficult to assess how much he understands.”
“It has impacted on his health greatly and overall failure to thrive.”
“Our son was happy to have family at home with him full time. He missed seeing people face to face, but loved having occasional zoom calls.”
The overall picture from this survey, as these final quotations from responses indicate, is one of variety. The age of children (both with and without Down syndrome), the location and housing situation of whānau, the experience of supports both before and during the Omicron outbreak, engagement with reputable public health and vaccination information, and the individual health and wellbeing of each respondent and their loved ones have all impacted the experience of the Omicron outbreak, and result in the fairly mixed picture described above and in our Winter edition. However, there are common threads that are evident. Increased loneliness and stress, reduced services impacting whānau life and wellbeing, and challenges re-integrating into classrooms, jobs, and communities. However, the overall picture is of positivity when it comes to information provided, health measures taken, testing and vaccination, and the efforts of health workers and service providers.
For the whānau of people with Down syndrome it seems, the Omicron outbreak while predominantly acknowledged as necessary to avoid the tragic consequences and devastation seen elsewhere, was a testing, challenging time, that exposed existing gaps in our health, education, and social development services while also demonstrating some of their strengths.
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Keratoconus in Down syndrome 21 Project study outcomes
Keratoconus in Down syndrome KIND 21 Project
you for your support of the Keratoconus in Down syndrome 21) project, below is a summary of the main study results: common is keratoconus in Down syndrome?
Key study outcomes
Thank you for your support of the Keratoconus in Down syndrome (KIND 21) project. Below is a summary of the main study results: How common is keratoconus in Down syndrome?
• Corneal topography is a more accessible corneal imaging device. It is useful for imaging the front surface of the cornea.
Keratoconus is very common, it affected between 26.3% (~1/4) and % (~1/3) of people that participated in our studies.
Environmental risk factor
• Keratoconus is very common, it affected between 26.3% (~1/4) and 38.8% (~1/3) of people that participated in our studies.
people with Down syndrome generally tend to have a more curved cornea even without keratoconus. Therefore, imaging with a device with more detailed measurements such as corneal tomography is recommended.
• However, people with Down syndrome generally tend to have a more curved cornea even without keratoconus. Therefore, imaging with a device with more detailed measurements such as corneal tomography is recommended.
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Environmental risk factor
Corneal tomography is a better diagnostic device as it provides more information on the front and back corneal surface, and corneal thickness. Children with Down syndrome should have their first measurements taken at around 10 years old to allow comparison with future measurements.
Frequent eye rubbing should be avoided. People with Down syndrome that develop keratoconus often rub their eyes. Frequent rubbing can cause keratoconus to progress. People with Down syndrome and keratoconus should have regular eye exams to monitor for keratoconus progression.
Clinical practice
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Keratoconus severity
• Frequent eye rubbing should be avoided. People with Down syndrome who develop keratoconus often rub their eyes. Frequent eye rubbing can cause keratoconus to progress. People with Down syndrome who have keratoconus should have regular eye exams to monitor for keratoconus progression.
Keratoconus severity
• Corneal tomography is a better diagnostic device as it provides more information on the front and back corneal surface, and corneal thickness. Children with Down syndrome should have their first measurements taken at around 10 years to allow comparison with future measurements.
Clinical practice
People with Down syndrome have more curved and thin corneas even without keratoconus. This can make the classification of the early keratoconus challenging. Therefore, monitoring for change over time is very important.
Participants with Down syndrome and keratoconus were more likely have reduced vision compared to participants with Down syndrome who did not have keratoconus.
• Participants with Down syndrome who had keratoconus were more likely to have reduced vision compared to participants with Down syndrome who did not have keratoconus.
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People with Down syndrome with advanced stages of keratoconus were more likely to present to a public eye hospital than people with Down syndrome with milder keratoconus. However, treatment with corneal cross linking is available for earlier stages of keratoconus , which prevents progressive keratoconus-related vision loss.
• People with Down syndrome have more curved and thin corneas even without keratoconus. This can make the classification of the early keratoconus challenging. Therefore, monitoring for change over time is very important.
severe, potentially blinding, and painful stage of keratoconus known as acute corneal hydrops, affected 14.0% of participants with Down syndrome who had keratoconus . However, with early detection and early treatment by corneal cross-linking, progression acute corneal hydrops can be prevented.
Corneal imaging
• The severe, potentially blinding, and painful stage of keratoconus known as acute corneal hydrops, affected 14.0% of participants with Down syndrome who had keratoconus. However, with early detection and early treatment by corneal cross-linking, progression to acute corneal hydrops can be prevented.
The PhD thesis can be access via the following link: Keratoconus in Down syndrome: Prevalence, assessment, visual disability, quality of life and corneal cross linking (auckland.ac.nz)
• People with Down syndrome with advanced stages of keratoconus were more likely to present to a public eye hospital than people with Down syndrome with milder keratoconus. However, treatment with corneal cross-linking is available for earlier stages of keratoconus, which prevents progressive keratoconus-related vision loss.
Corneal imaging
• Imaging of the cornea requires the person to open their eyes wide and look at a light target for a few seconds while keeping still.
The PhD thesis can be access via the following link: Keratoconus in Down syndrome: Prevalence, assessment, visual disability, quality of life and corneal cross linking (auckland.ac.nz)
Imaging of the cornea requires the person to open their eyes wide look at a light target for a few seconds while keeping still. Corneal topography is a more accessible corneal imaging device. It useful for imaging the front surface of the cornea. However,
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Listening to siblings
By Lauren Porter, Champion Centre
“When I came home, I was saved by her smile.” – older brother of a sister with Down syndrome. What does it mean to be a sibling? On the surface, it’s simple. A sibling is a brother or sister. They share parents and usually a home. But sibling relationships are complicated. There are differences in age, development, social experience, personality, and needs. Sibling relationships include warmth, closeness, and sharing; they also include conflict, rivalry, and annoyance. Each sibling has a different relationship with each parent and the world at large. Moreover, sibling relationships change and transform across time. What it’s like to have an infant for a sibling is different when that infant becomes a teenager.
For siblings of children with Down syndrome, there is another layer of complexity. How each whānau understands, responds to, and explains Down syndrome has an impact on all the variables in the sibling relationship. And of course, each child with Down syndrome and each sibling are totally unique human beings.
Nonetheless, there are themes that emerge in the research that has been conducted. We now have research based on interviews with children, as well as research based on interviews with adults – in both cases they have a sibling with Down syndrome.
Themes extracted from the childhood research fall into the following categories: positive acceptance, negative acceptance, upset with society, protectiveness, quality of relationship, parental attitudes, and the meaning of Down syndrome. As could be expected in any sibling relationship, some siblings saw their brother or sister with Down syndrome in a negative light, with a focus on how their sibling’s diagnosis limited or impacted them, including things like discrimination and special treatment. One child with a younger sibling with Down syndrome said, “It is very upsetting, and I don’t understand why my family spoils him.” Others saw things positively; there the focus was on acceptance, happiness, and love. Here a big sister commented, “My sister is not a burden but an angel who brought happiness to the family.”
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Left: Mia & Vieda
Middle: Liam C & brothers 2021
Right: Lilyana & her sister
Many young children also talked about their indignation with society’s prejudice and judgement. A young adolescent big brother said, “We are all human beings, but why do we still discriminate?”
Children were also acutely aware of their parents’ attitudes about Down syndrome. They noticed if parents felt overprotective, how they shared the information with others, and how the family grew and changed as their sibling got older.
Adults have also been the subject of research, looking back on what it was like growing up with a sibling with Down syndrome. In the case of retrospective reflection, the feedback is mostly positive. This potentially shows how people integrate and make sense of disability across time, moving beyond the period of immediate emotional impact to a position that is both stable and positive. Overall quality of relationship with their sibling was rated as mostly positive by nearly 97% of interviewees. Emotional closeness and protection earned high scores. Worry and guilt were features too, though they scored less highly across respondents. Roughly half felt the diagnosis had a moderate impact on their own relationship with their parents and nearly half felt it had a strong impact on their relationship with other siblings.
Sibling position mattered, suggesting that feelings of early maturity were likely when you were the older sibling and feelings of jealousy and conflict were less likely.
Overall – as with all sibling pictures and analyses – a sibling with Down syndrome was just one factor amongst many in what family relationships looked like and how siblings felt about growing up. Because research highlights both common themes as well as uniqueness of each sibling and family, it seems the take-home message is this: how a child feels about their sibling with Down syndrome matters. Those feelings impact present and future relationships and are likely to reflect the larger family picture as well as the interaction with community and extended family. Positive feelings are wonderful, but negative feelings are not unusual and not a cause for panic. All children have both positive and negative feelings about their siblings. Making space to listen to siblings and include them in dialogue is important. Simple questions like “what do you like?” and “what do you dislike?” can open the door to real conversation. If a child is too young for conversation, noticing and reflecting back to them can support the growing understanding between you.
References:
1. Lemoine, L., & Schneider, B. (2022). Growing up with a brother or sister with Down syndrome: Adult siblings’ perceptions of their childhood relationships. Journal of Intellectual & Developmental Disability, 47(1), 39-52.
2. Takataya, K., Mizuno, E., Kanzaki, Y., Sakai, I., & Yamazaki, Y. (2019). Feelings of siblings having a brother/sister with Down syndrome. Archives of psychiatric nursing, 33(4), 337-346.
3. Hou, X. H., Gong, Z. Q., Wang, L. J., Zhou, Y., & Su, Y. (2020). A reciprocal and dynamic development model for the effects of siblings on children’s theory of mind. Frontiers in Psychology, 11, 554023.
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Finja gets stuck into the Art workshop with Dame Denise
Some of the yummy treats from the book available
The art of cooking & the cooking up of art
By Sarah Paterson-Hamlin
It’s been all go at UpsideDowns, as we’ve welcomed more and more friends and whānau to our new premises in Avondale, and launched our very own cookbook! When Dame Denise L’Estrange-Corbet first visited us in autumn to see our new HQ and see how she could help, our multitude of blank, white walls stood out to her. Of course we wanted them to be full of colour, but when you’re running a charity budget, artwork doesn’t get to feature. But that’s where Denise’s genius came in. She volunteered, along with her daughter, Pebbles Hooper, to run an art workshop for some of our members, that would be an awesome experience and create some artworks for our blank walls all at the same time.
Bunnings Mt Roskill donated all the supplies required – canvas, paints, scissors, brushes, etc., with Dame Denise’s WORLD fashion brand providing off-cuts from their gorgeous work.
On the day itself, the HQ was packed with kids with Down syndrome and their siblings of all ages, from little toddlers Sahra and Finja, all the way to 21-year-old Paris Parker, one of the original UpsideDowns members. Parents enjoyed a coffee and a snack while, without exception, every single young participant got down and focussed on their creations. The results are simply stunning, and you are always welcome to pop in to UpsideDowns during school hours to have a look.
While you’re there, you could also get your hands on another very special item – Chow Downs: Recipes from the Down Syndrome Community of Aotearoa. This is something we’re incredibly proud of. It came about as a result of our former Fundraising Manager, Ella Pooley, recalling a fundraiser she was part of while at primary school, and snowballed when the very talented parents of new member, Leonardo Ayers Val, volunteered their design services through Catto Creative.
The book contains over 50 recipes from UpsideDowns whānau, along with special guest entries from Mike McRoberts, Dame Denise L’Estrange-Corbet, and Leisel Shepherd, as well as a collaboration with Garden to Table and Te Reo Club. Adrian and I have also slotted in our family favourites. Many of the recipes include some background as to their origin, and all come with a full colour photo which is really special. It really does feel like being let in to someone’s kitchen!
There are scones, smoothies, soups, slices, and more to satisfy any taste, and a handy dietary requirement code as well. Some of these offerings were available thanks to Countdown, accompanied by some wine thanks to Saint Clair Family Estate, at a launch for contributors held at UpsideDowns HQ. A wider launch for sponsors and friends will be held a week from the day I’m writing this at Time Out Bookstore in Mt Eden, Auckland, who will also be stocking copies.
After such a long time of not being able to get together, we’ve been so happy to welcome so many whānau to our new home to celebrate art, food, and community. Chow Downs is available from upsidedowns. co.nz and select independent bookstores.
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Kieran Barker contemplates his artwork
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Alex, Ben & Liam Urquhart
Our People
Left: IHC Art Awards judges (left to right) Simon Lewis Wards with 'Serious Strokes', Libby Hunsdale with 'Portrait of Lorde' & Sam Johnson with 'Meeting'.
Right: Judge Libby Hunsdale in the process of assessing the artworks
IHC Art Awards 2022
Mark Warner from Auckland has won the IHC Art Awards for 2022 and a $5,000 prize.
Mark's ink drawing 'Meeting' was judged as the top pick out of more than 400 entries from artists with intellectual disabilities.
Helena Brocklebank from Kāpiti has won the Youth Award and $1,500 for her comic drawing 'Angry'. This is the second year the IHC Youth Award has been presented.
The People's Choice Award voting kicked off on 1 August 2022 and ran for two weeks.
"It was spectacular to see a record number of artists enter this year," says IHC's Janine Stewart. "The talent and variety coming through from across the country is truly impressive."
All 98 finalists are currently on display, and for sale, at a pop-up gallery at 69 Willis Street in Wellington. Those that don’t sell will be auctioned at a later date via Trade Me. 100 percent of the sale or auction money will go directly to the artists themselves.
The judges this year included actress and model Libby Hunsdale who is the first person with an intellectual disability to be on an IHC Art Awards judging panel. She was joined by former Young New Zealander of the Year and Chief Executive of the Student Volunteer Army, Sam Johnson, as well as Auckland-based sculptor Simon Lewis Wards.
The IHC Art Awards, supported by The Holdsworth Charitable Trust and L’affare, has been running since 2004. Previous winners have gone on to exhibit their work throughout Aotearoa and overseas.
Longstanding Art Awards Ambassador and IHC New Zealand Patron Dame Denise L’Estrange-Corbet, has paid tribute to the families, art tutors and support staff for encouraging artists, and to the artists themselves, for the brilliance and versatility on display.
The winners are:
• $5,000 First Place Winner - Mark Warner from Auckland with his drawing titled 'Meeting'
• $3,000 Second Place Winner - Sarah Holton from Auckland with her ink artwork titled 'Serious Strokes'
• $2,000 Third Place Winner - Emma White from Hamilton with her acrylic painting titled 'Portrait of Lorde'
• $1,500 Youth Award Winner - Helena Brocklebank from Kāpiti with her drawing titled 'Angry'.
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Green Dreams – Tom’s Plants
By Kathy Sadgrove
Thomas wasn’t keen to attend a regular vocational program, and has struggled to find employment opportunities. So, rather than have him sit around doing nothing, we looked at what he might be interested in doing. I have a large garden so we began there, as during his high school years Thomas had done plant potting for his work experience. We set up a secondhand tunnel house then found some free pots and looked at what would be easy to grow from cuttings. We started a Facebook page called Green Dreams and looked at future goals and the possibility of setting up a micro business. Thomas has had some amazing donations of pots, cuttings, plants, cups etc. from family and friends. We applied to Jubilee Trust for a grant to put in a small water tank and a new tunnel house. We formed a relationship with Bethany Gardens, our local flower and vegetable shop at the end of our road. Bethany Gardens are very community minded and totally support Thomas to have a stall to sell his plants there. He now has a regular group of plant-lovers that check in most weeks to see what’s on offer in his stall. Any money made goes back into purchasing potting mix, special plant mixes, and plants to grow for future propagation. A specialty of Tom’s plants are his cups. These have become a bit of family affair - Dad drills the holes in the cups for drainage and Mum does the labeling while Tom does the planting. Most Thursdays, Thomas’ friend Maddy and her dad Kevin join us to make garden craft. Maddy is more keen on craft than planting, and they spend time decorating pots, creating mosaic work, learning new skills, and enjoying each other’s company.
Interview with Blake, age 5
What is your brother’s name? Aiden How old is Aiden? 3
What do you like about having a little brother? I like to go on the trampoline. Sometimes when my Dad comes from work he plays on the tramp with me and Aiden. And when Aiden’s not there he bounces me up. What do you think Aiden’s favourite thing about you is?
I forgot
If you had one word to describe Aiden what would it be?
Aiden
What do you love about Aiden? How he jumps What is something annoying about Aiden? How he’s getting my robot right now Do you remember when Aiden was born? Probably 3 years ago?
Do you know that Aiden has Down syndrome? Yes
What do you know about Down syndrome? Nothing, I’ve never been there.
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My sister
by Rylan Curtain
Hi, my name is Rylan Curtin, and I am Lily's oldest sibling, Lily was born in 2018 on May 20th. When I found out I was having a little sister I was so excited I actually remember permanently the time I found out she was a girl.
It was me, my younger brother Ollie, and my Nana. My parents were going to get a scan to see if my new sibling was going to be a boy or girl and my Nana took me and Ollie to the Auckland museum, and we were on our way out and my Nana got a phone call from my parents saying that I was gonna get a baby SISTER! I was so excited jumping up and down because I already had the other brothers at the time, the other one being Charlie, so I was definitely stoked all day.
When I was old enough to know that Lily had Down syndrome, it didn’t change a thing to me.
Every time I came home after a rough day at school or just had a bad day I would think of Lily, every time I’m injured in a game or sport I would think of Lily - she would give me motivation to keep going because if she got heart surgery only a few months into the world then I can definitely turn my own bad day into a good one.
Lily has helped me through many things, we all love her, she is funny, kind, cute, and no matter what's wrong she can fix it.
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Our sister Essie
An Interview with Ollie and Boston Recordon
How old are you?
O: I’m 11
B: And I’m 9
Tell me about your little sister and brother?
O: There’s Essie, she’s 5 and she’s really nice. She’s got T21 Down syndrome. And there’s Jonty who’s 2 and he’s really cute but a bit naughty sometimes.
Do you remember Essie being born?
B: Kind of but not really though.
Do you remember seeing her as a baby?
Both: Yes.
And were you excited?
Both: Yeah, really excited. What do you know about Down syndrome?
B: It’s called a disability and most people have two somethings but they have three?
O: I think those somethings are called chromosomes and it slows down your learning.
If I say Essie or Esther, what’s the first thing that comes into your head?
B: Ice cream!
O: Adorable.
What are your favourite things to do with Essie?
O: Probably draw with her – she’s really cute when she draws. She really likes when I draw a house or something she says “Oh a house, and Ollie’s room.”
B: Probably just running around and being silly.
What do you think Essie’s favourite thing about you is?
O: I don’t really know – maybe how I bribe her with treats?
B: That I have lots of drawing things because she loves to draw – art stuff. What is she really good at?
B: Drawing and running. And what does she find harder?
O: Probably speaking. She finds it hard to find her words some days. Sometimes her words are a bit muddled up and I understand it because I’m used to her but everyone else asks “What did she say?”
Do you remember when Jonty was born?
B: It made the numbers more even – so it’s Essie and Jonty and then me and Ollie.
O: You can hear them playing with each other now.
B: He kept Essie busy and they play with each other so Mum had to keep an eye on Essie a little less. So it’s different to have another kid in the family – more fun actually.
Do you feel like you had more jobs to do when Jonty came along or fewer?
O: I feel like it was more responsibility because we had to play with – we had to make sure they weren’t getting into too much trouble when Mum was looking after one of them so we had to look after them – but it’s cool.
So all in all you guys like being big brothers?
Both: (enthusiastic nodding) Yep, definitely. Is there anything else you want to tell me about being a big brother to Essie?
B: I think it’s just really cool how she’s always super excited and happy and always really – I forgot the word – about everything. Enthusiastic?
B: Yeah enthusiastic!
O: She’s always very excited and eager to explore and do more.
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My sister
by Harriet Beguely, age 9
Having a sister like mine is very different from other people. Charlotte has Down syndrome. She will always be different to others because people with Down syndrome look, act and learn things differently. Charlotte is 6 years old, and I am 9. We both go to Chelsea Primary School. She has made lots of friends (which is very good) in her class and in after-school activities.
At home she is sometimes difficult to look after! She has these sayings that she says to Dad when he goes to work in the mornings, like, “Don’t take our car!” and, “Don’t forget to la la la!”. Charlotte loves to watch TV, especially when we watch Malory Towers, Encanto, or The Sound of Music. Her favorite character in Encanto is Isabela, in Malory Towers it is Jean, and The Sound of Music is Liesl.
Charlotte also likes to play handball with me at home, and her favorite food is toast with vegemite and peanut butter.
Her face looks different to mine. She always gives slobbery kisses, but she is super cute when she does a fishy mouth and ahhhhh mouth. She has rectangle-ish pink glasses.
At school she likes to meet me at playtime and play, and usually ends up dragging me and my friends around the school, introducing me to all of her class.
When we get home she often tells stories about her friends at Learning Through Play time. On the third of August she got her 100 day smarter certificate, and in term one she got a DNA certificate and values one.
Sometimes Charlotte insists that we call her Isabela, or Liesl, or someone else. On Wednesdays, her speech and language therapist comes to school to help Charlotte with learning, and on Monday someone else comes to help Charlotte. Another thing she loves to do is help me with my Minecraft projects, and insists that I create polar bears on desert islands on the sea.
I would never trade her for anything else on the planet!!!
My brother
By Luke Simons
My brother Ben is a superhero. Ben has laser eyes like Superman. Ben can box like Hulk. Ben can run as fast as Flash. Ben is strong like Cyborg. He has big muscles. Ben can drive like Batman. He has a fast blue Subaru. Ben is my superhero. He looks out for me and we box together to keep fit.
My brothers
By Jade Laughton
I am Jade Laughton and I am going to be 28 in October. My two big brothers are James and Jesse. They are awesome and I love them very much. They are very cheeky and make me laugh and keep me safe.
I miss them now they do not live at home with me all the time but I see them sometimes and I still beat them playing last card. I am very good at that card game.
They like to pull faces when we have photos together. They are very tricky and never tell me off.
My bros are the best brothers in the universe.
Meet the Gaede Sisters
What you need to know about Emily
When some people think about kids with Down syndrome, most of them will automatically think that they will be extra work and that they can’t do stuff like other kids. Well, I think you need to meet my sister Emily.
Emily might take a bit longer when it comes to learning maths and science, but seriously, you can’t say it was always easy for you either!
Although sometimes a bit hesitant, Emily will eventually give everything a go. And she is the reason we are doing things not many other kids do like being in the pipe band. Because she wanted to learn to play the tenor drums, I joined, too, and now we’re playing in the City of Dunedin Pipe Band together. We do other stuff together, too, like gymnastics. playing netball, volleyball and handball. Sometimes we’re in different teams and sometimes we play together. And although we might not be constantly doing stuff together, we will always look out for each other and check in on each other when we need help and support. And when I'm doing something and she’s watching she will always be my personal cheerleader.
She loves baking and sometimes makes us Jamie Oliver’s spinach pancakes, and it doesn’t even stop there. She makes donuts, cakes, cupcakes, pasta meals, biscuits and cookies and more. Not every kid makes food for their family, right?
Emily also has brilliant taste in clothes and loves designing outfits. She has knowledge of what goes together and what doesn't. She also loves doing all sorts of crafty stuff. With a little bit of help she can make pillowcases and jewellery. She loves painting and making birthday cards. She always makes the best cards, because she
adds a very personalised message inside and colourful drawings.
So I would like you to remember: Whenever you hear about people with Down syndrome, don’t pity them, don’t diss them, and most importantly don’t ever underestimate them.
— Anika, aged 13 (aka little sister)
Sandwich Sisters
Anika, bird girl. Little sister but taller than me. So annoying!
Loves reading books and arts and crafts, She plays music on the bagpipes and I do the drumming. She is pretty and beautiful and sporty. She’s smart and strong. Drawing or painting together. Playing games together. Nice to each other. Looking after each other. But she does not share food!
Louisa, book worm!
Loves books and books and more books, Harry Potter and Percy Jackson. Teenager books. Lets the cat in and plays with her. Meets her friends in town. And sometimes takes me. Be nice to each other. Make friend of her and make her happy. Sometimes I walk to school with her. She’s stylish and smart. And very beautiful. But always grumpy in the mornings! And the filling of the sandwich: Me ‘Cos I like to snuggle In between them. Group Hug!
— Emily, aged 15
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My Sister Emily:
I am the eldest of three girls in my family and I love both of my sisters completely unconditionally. Like in all sibling relationships we fight and argue, they both know exactly how to get on my nerves and love borrowing clothes from my wardrobe. First and foremost, Emily is my little sister. She’s incredibly stubborn, persistent and will always stand her ground if she thinks it’s important. She has stunning, blue eyes and the softest dark blonde hair and a very creative sense of style. It also happens that Emily’s 21st chromosome tripled instead of doubled in the womb. Emily has Down syndrome, but it is no way the thing that defines her most. Emily’s extra chromosome has never been a big factor and has in fact brought out what I hope are some of my best qualities. Thanks to her being in my life I grew up with the mindset of accepting other people without a second thought, how to be patient and reframe my thinking and how to help people. I am a buddy reader at my high school and have been able to use skills that I’ve learned from working with Emily to help other people.
However, as Emily’s big sister, the sister of someone with a disability, I do often struggle – and not because of Emily’s Down syndrome, but because of how society treats people like her. It often feels like the world I live in seems to be one of hopeless contradiction. Everywhere, people talk about inclusion and celebrate diversity of different races, religions, the LGBTQIA+, which is as it should be. But this world still struggles to accept people like my sister, despite people with Down syndrome appearing more frequently on television and modelling on fashion catwalks. I have watched my mother have to fight for my sister’s right to be taught in a class with her ‘normally’ abled peers and it is frustrating and painful to watch my incredible, funny, loving sister trying to navigate a world that doesn’t accept her and refuses to learn to understand her. I simply cannot understand the wilful ignorance and ableism of our society and it is time to stop looking at people with developmental or intellectual disabilities as ‘less than’. Everyone is unique and our differences should be embraced and celebrated and accepted. Louisa, aged 17 (aka big sister)
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Left: Keen on Candyfloss
Right: The girls baking
Sibling Appreciation from a Person with Down Syndrome
By Andrew Oswin
Hi, my name is Andrew, a STRIVE member and Down Syndrome International New Zealand Representative, and I would like to take this opportunity to tell you of my siblings.
I have two siblings, an older brother and a younger sister, who have cared, loved, and supported me throughout my 32 years.
I admire my sister Kate very much because of how talented she is. She is a happy and beautiful person who makes me feel happy. Kate has been my role model. When I was younger she showed
me how to focus on my schoolwork and homework. When she was a teenager, Kate wanted to become a professional violinist and now she is playing in the fabulous London Philharmonic Orchestra showing me how to follow one’s dreams. She has always been there for me and she is also my special friend. Kate composed a piece for orchestra with a special part for me to play on the triangle. She is currently living in London and I have visited her there with my parents in 2016, when we saw her play her Master of Arts graduation recital at The Royal Academy of Music. We can’t wait to see her playing in her orchestra. My brother Matthew is also musical and I have enjoyed seeing him playing the piano and singing in a choir. He is now living in our city again and supports me at Special Olympic Ribbon Days. I was an usher at his wedding and loved greeting friends and family.
I am very lucky and ‘extra special’ to have siblings who care, love and support me.
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Kelsey & Dan
By Daniel te Kaat
My name is Dan te Kaat, and this is my sister Kelsey.
I am a designer living in Christchurch; I have been working with NZDSA for the past 8 years on brand, design and marketing - including this CHAT 21. I am also a committee member of the Canterbury Down Syndrome Association. Kelsey was born in 1992 when I was seven years old. I remember seeing Kelsey for the first time in the hospital the morning she was born. I think, at that stage, no one knew she had Down syndrome - or at least I certainly didn’t. Later that week, my dad sat with my other sister Laura and me to explain Kelsey had Down syndrome. Laura and I both went to primary school with a young lad with Down syndrome - so we already understood what Down syndrome was. At our young age, this didn’t change our excitement to have a new sister and definitely didn’t change the love an expanding family was feeling. The news of my new sister soon spread through our primary school. It was perhaps my first honest look at some of the ugly parts of the world. I think a lack of real knowledge and understanding at the time lead to an element of bullying at school. My parents were incredibly supportive, so any hard times were quickly overcome. This was an instrumental time in my life; it helped shape the person I am today. I began to comprehend empathy,
understanding and acceptance of others from an early age. These personality traits have become ingrained in me. Qualities I hold very dearly to this day. Kelsey and I had a great relationship growing up; we loved watching the Simpsons, WWE wrestling - Kelsey used to be the boss of chokeslams! We played outside on the swings and on the trampoline and had a typical family life and childhood. A highlight memory for me is riding the rollercoasters with Kelsey at Dreamworld - she can’t get enough of the high-speed action, and it was hard to get here to stop riding.
Kelsey and I are now in our 30s, and our relationship has remained strong. We don’t watch as much of the Simpsons anymore, but we always enjoy catching up for visits and family gatherings.
Kelsey is now a proud auntie to Rose and my two sons, Bill and Chester. It is incredible to look back over the past 30 years and remember everything we have done together as we move into a new chapter of our lives, as my sons expand our family once again.
I would never change anything in my life with Kelsey. She has taught me more than I could have ever imagined. Appreciation for the small things. How to care for others without expectation. What it means to protect. How to understand without judgement. Most importantly, a deep feeling of empathy at all times.
Above: The special moment when Kelsey met her first nephew Bill.
Matt & Tom — Them & Their Job
For this special sibling edition of Me and My Job, we’re doing something a little different and spoke to Alison Whittington, Mum of Matthew and Thomas, fraternal twins with Down syndrome. You may have heard of Matt and Tom from the family business, fittingly called Matt and Tom. So what’s it like to be siblings with Down syndrome who work together?
Matthew and Thomas are 20-year-old twins. They’re still at school at the moment, but a few years ago their Mum and Dad, Alison and John, started looking for post-school opportunities for the boys.
“I saw a picture of a plywood Christmas tree and I asked John who’s a design engineer, “would you be able to design a plywood tree for us?” recalls Alison. “So he designed this tree and he came up with what we thought at that time was a pretty good Christmas tree. We decided we could make a few more of these to sell. They’ve gone through quite a few versions from that first tree.”
Today, the Matt and Tom star-topped trees are a familiar sight to many, and now
come in two different sizes. “I think it was 3 years ago now that we started doing the small trees and they’re more popular than the big ones. They are perfect for small spaces. I like them better, they’re more dainty, they’re easier to deal with from our point of view and we probably sell twice as many of them.”
As the twins near the end of their school career, they are looking to take on more of the tasks involved with the enterprise. “We’ve got a list of jobs that the boys can hopefully help us with.” Alison explains. “It will be a learning curve for them this year. “We make the trees in a furniture making factory, so it’s not an appropriate place for either of them to be as it is noisy and there is the safety aspect too. John and I go to the factory and cut the trees on a CNC router that we partly own. Once we bring them home there’s a lot of preparation before they’re good to go. So the boys can help in a safe environment at home.” Once the tree components are cut, there is plenty still to do. The pieces don’t come off the machine in the order needed for each individual tree, so they must be sorted before being put up and taken back down again to ensure they will function correctly. “We tie each one with a red ribbon, add instructions and a business card, then each tree is put into a bag that we’ve made. If they’re being shipped they are put into a box and the shipping labels printed and put on them.”
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Them & Their Job
Example of Christmas tree by Matt and Tom
Alison explains that Matthew is likely to be more involved than Thomas.” Thomas has autism, he may not be able to help as much. If he just carries the trees downstairs for the courier, it is something that he can help with. Their contribution may be small but so be it, they’re involved in doing something that is meaningful and engages them during the day.”
Matthew and Thomas are the third and fourth children in the family. Their older sister lives with her partner and three children in Lower Hutt, and big brother Ben lives in Whangaparaoa.
“Both of the big kids are really amazing with Matthew and Thomas. Matthew idolises Ben, he absolutely adores him and will do anything for Ben, and Ben likewise will do anything for Matthew.”
So what is it like to live, work, and learn with your twin brother? Alison says that although they are twins, the boys are very different, and are essentially “brothers that happened to be born at the same time.”
The boys are fraternal rather than identical twins, and when it comes to personality they’re very different as well. Matthew is very gentle and passive, whereas Thomas can be rougher and more assertive. “They do like to be together, but they’re not joined at the hip or anything like that.”
When it comes to the Matt and Tom business, they also work more independently, and Alison expects that to
continue once they’ve left school and are spending more time on it.
“We’ve worked outa good system because it does get crazy around Christmas time. Because Thomas has autism, you just have to choose the moments when he can be engaged with something. It does get hectic. One weekend we dispatched 30 Christmas Trees and the poor courier had to come back a second time!”
Matt and Tom Ltd now sells felt star decorations, seed lights, and Loc Blocks in addition to the two sizes of Christmas tree, and the business reputation is growing, which means there will be plenty for everyone to do this Christmas! But there will still be time for the family to enjoy time off together. Whether at the family home or in Lower Hutt, Matthew and Thomas’s favourite aspect of Christmas is that everyone is together (although Matthew in particular is also a big fan of opening presents!)
“We’re all just a typical family really, there’s nothing fancy about us.”
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Shona & Roderick: a lifelong relationship
By Sarah Paterson-Hamlin
We’ll probably never know for sure, but Shona suspects that her little brother, Roderick, might be the oldest person with Down syndrome in Aotearoa. Shona was two when Roderick was born, and the two have now been blessed with 75 years (and counting) of a loving sibling relationship which has helped shape the lives of many other families as well as their own, through the pioneering work of Hōhepa, which came about because of Roderick’s birth.
Shona and Roderick Stronach were born in the 1940s, and spent their early years with their parents and older twin sisters, Marian and Marjorie, on the wild and rugged Highcliff area of the Otago Peninsula, where the family had a clifftop farm. Shona only has vague memories of Roderick crawling along the passageways of that home, as both were still quite small when the family relocated to the gentler vicinity of Tomohawk Lagoon.
“We bordered that lagoon and we had a wonderful life,” Shona recalls. “And of course there are a lot of stories about Roderick’s adventures there! He was a great one to run away. Once, we couldn’t find him and our mother found him right down the bottom of the next-door paddock – he was under the legs of a bull!”
It was a large family home, and Shona and Roderick spent much of their time playing together there.
“We had this big veranda and we had this four-wheel jigger thing that I used to push him in. We created ghost trains and things like that,” Shona laughed as she recalled these early years together. “I was obviously a fairly helpful caregiver in terms of entertainment! Those were lovely memories.”
Shona can’t recall any negative attitudes towards Roderick – only the care of the neighbours. She also can’t remember her parents discussing the fact that Roderick had Down syndrome with her, or that she had much consciousness of it at all until the age of about 12.
“I do remember at early adolescence being self-conscious and realising he was different, and having to really grow to accommodate that over, maybe two or three years coming to terms with it.”
From his youngest years, Roderick possessed a friendly, warm, and radiant nature. “At family picnics you’d look around and say ‘Where’s Roderick?’ and he’d be off with the next group saying “I know you!” That’s lasted his lifetime those words – ‘I know you!’ – and that lovely friendliness and warmth.”
At that time, integrated or mainstream schooling weren’t options for Roderick, and so from the ages of seven to about ten, he attended Sarah Cohen School in Dunedin, a school established for pupils with special needs in 1926 that is still going strong today.
Roderick was not academic, and though he learned some letters there he never became fully literate.
In the background of the family’s lives, since the time of Roderick’s birth, their
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aunt, Marjorie Allan, had been pursuing ambitious goals that were inspired by her new nephew. At the time, Marjorie was overseas in London studying the work of Rudolph Steiner. When Roderick came along, she decided to move into training for therapeutic education and social therapy for people with intellectual disabilities based on Rudolph Steiner. “When Roderick was born she came back to meet him, then she returned to Europe and trained in the various Rudolph Steiner curative and therapeutic homes and schools where that work was developed and gathered up as much experience as she could. And then in 1956 she came back and toured New Zealand and lectured about the work, needing funds of course. When she was in Hawke’s Bay, a farmer called Lew Harris who had an intellectually disabled daughter, came forward and really wanted to help with the work, and was a really generous benefactor and donor.”
Thanks to Lew Harris (later Sir Harris), in 1957 the very first Hōhepa building was erected in Poraiti in the Hawke’s Bay, and became a residential school, initially for only nine children. One year later, a tenyear-old Roderick joined Hōhepa. After a short time in the school, he moved on to the newly acquired farm property in Clive, where he was to spend the next six decades of his life.
Two years after Roderick made the move to Hawke’s Bay, Shona and her mother followed, their father having passed away. “My mother, Mary Stronach, took on the management and care of the house with the children and that freed up my aunt to concentrate on the valuable teaching and therapeutic work. My mother had a very important role holding the whole
management together in terms of practicalities. She was good value! I went to Napier Girls High School but I lived there [at Hōhepa]. So it was an interesting time!” By this stage there were about 24 children, living in dormitories of six to eight, each cared for by women known as ‘dormitory mothers’. Though he was now living at the farm in Clive, Shona and her mother were thrilled to be reunited with both Roderick and Marjorie.
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“You have your own life too by that age, so it was an interesting transition, but I was always very grateful for what I learned and received through Hōhepa. As a teenager you don’t always recognise it at the time! But I mean really it was wonderful. I got a chance to be one of the dormitory mothers on the weekend and I began to take responsibility which is good for teenagers.”
Once at the farm, Roderick initially lived at the main house and underwent some transitional schooling, alongside craft work, music, and therapies. At the beginning of his teens, he went to live at Anyon House, one of several small houses for around half a dozen residents at a time. At about this time, his mother and aunt purchased a beach house at Waipatiki that was to become a second home for the family.
“We’d all be there for weekends or holidays and my sisters would come down too. So this beach at Waipatiki was very special and a lot of the people who worked at Hōhepa shared that as well.”
Over the next sixty years, Roderick moved through various stages of life at the farm, always directed by his preferences and aspirations.
“He moved himself through his life stages at the farm, he was a farmer and a gardener, and used to get the milk and work the cows. Then he moved into the workshops and did woodwork and then there was the copper workshop. Each time he would let people know he wanted to move on.”
As he got older, Roderick struggled with the noise of the copper workshops, having never liked loud sounds. He chose to
move on to the candle workshop, before eventually selecting what he termed ‘Quiet Care’ – the retirement home section of the Hōhepa community where he still lives. Though he has many interests, two in particular stand out to Shona that he’s been able to enjoy more, once moving into retirement.
“He carries an enormous interest of the officialdom of all the meetings that he’d been to with my aunt and the Trust Board and conferences. That was in him, and he’d take his bundles of papers and do his office work. In 2018, he was given honorary life membership to the Hōhepa Homes Trust Board.”
The other great love of Roderick’s life has been classical music – unsurprising when considering both his mother and aunt began their careers as music teachers before the Hōhepa journey began.
“He always wanted to be a conductor, if there were any musicians around or bands at the fair or anything, he would be up there conducting and he was good too. Music was one of his real loves and he still has that.”
Now an “elderly and distinguished gentleman”, for the past year or so, Roderick has been unable to weight bear, and prefers to spend most of his time in his room. “But he’s still very present. I was there last week and we had such a good time – the cat had got up on the arm of his chair and was determined to interject in our conversations. It was lovely, Roderick was right on the ball. But then the next day he was just so tired.”
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Although less physically capable, Roderick’s mind is unaffected by dementia, and he retains the ability to “just radiate” that Shona recalls characterising him from his infancy.
“He never had any shyness. He would just go up to people. His “I know you”, that was to strangers, but people he knew he would say ‘Are you happy?’ He’s 75 and that’s the main thing that he says now – ‘Are you happy?’. It was like, when you reach out to somebody you’re telling them that you recognise them. So that’s followed him all his life. He has a lot of humour and I think I played up a lot with that too in terms of the fun and the games and the songs, you know. Even now he’s not so capable but he can come up with some incredible humour. He’s got a twinkle in his eye behind what he’s saying.”
Shona lives in Christchurch now, but the siblings have never stopped seeing each other multiple times a year, and their bond is indelibly strong. “When we’re together there’s no barriers between us, we’ve got a good rapport.”
Just as Roderick’s arrival started her mother and aunt on an extraordinary journey that would ultimately found the beloved Hōhepa organisation, so too was Roderick always a part of Shona’s life pathways.
“As a 5-year-old I announced I wanted to be a children’s nurse when I grew up. And that resolve followed and shaped my career decisions throughout my life. I trained as a nurse and stayed close to the work with children. I lived up in Hawke’s Bay for ten years and for a good six of those I was working as a community nurse at Hōhepa. I think the care model which surrounded Roderick very much influenced the course of my life.”
Today, Hōhepa has branches in Canterbury, Auckland, and Wellington, as well as the original community in the Hawke’s Bay incorporating both the original school community at Poraiti, and the 50-acre Clive farming and workshop community where Roderick lives.
“Some might say that Hōhepa is an institution but it’s not. It’s a community of people and wonderful people that come and go from all over the world… The essence of Hōhepa is community and it still is, it’s not institutionalising. I know Hōhepa’s had to work very creatively to retain community but also to be out in the wider community. It has widened its web but it hasn’t lost its community sense.”
It’s a community – and now series of communities – that have made an immense difference to so many lives: residents, students, staff, volunteers, and Trustees, and without Roderick Stronach, who knows if it would have ever come to pass? Shona speaks with an incredible warmth, respect, and love for her mother and aunt, and for the many others who have worked to continue their legacy at Hōhepa. But most of all, her affection shines through when she speaks about her brother.
“I hope I’ve given you a reasonable picture of somebody who is very special.”
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The Bards of STRIVE
By Sarah Paterson-Hamlin
I LOVE poetry! I love it so much I spent years reading, writing, and editing it before doing what I do now with the Down syndrome community. I love how poetry can be powerful and shape nations. I love how it can express things about who we are we don’t even understand ourselves. I love how it brings comfort in grief, tells people we love them, remembers people who aren’t in our lives anymore, and how it can be anything from silly to life-changing. I also LOVE when I get to come and hang out on zoom with the awesomeness that is the STRIVE team. So, naturally, I was thrilled when Zandra asked me to facilitate a poetry workshop. We looked at what defines a poem, and talked about how there are almost no rules – they don’t have to rhyme, they can be about anything, be any length, and by anyone. We talked about what rhyme schemes have in common with ABBA, and we went over three big tools in the poet’s toolbox:
1. Metaphor (like ‘Love is an Open Door’)
2. Rhythm (like in anything by Dr Seuss)
3. Alliteration (like many of the names in Harry Potter)
The STRIVE team are so creative, and have such a love of poetry. There is nothing that could have thrilled me more than the reaction when Zandra revealed the theme of the workshop! They dove into our final challenge with great enthusiasm and creative skill too. This was to write something called a ‘found poem’. This is when you take existing words – they can be anything from instructions on a shampoo bottle to notes left in a visitor’s book – and turn them into a poem.
I am thrilled to share with you the STRIVE team’s Found Poem, Our found poem
Scotland o Scotland, You make my heart skip a beat; Van Gogh the experience, The Pokémon Movie, Posh nosh, A night we will never forget.
Catch up with friends of the STRIVE membersSuper kind.
Love is a string on the bow of life Tonight I can call you later. Chew for a brighter smile!
Here I am on the slide Field master, smarter gear, smarter care. Goodbye everyone I will see you after lunch.
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Poetry Page…
Editor’s note: It was so exciting to receive many poems this season – it was very hard to choose! Hopefully we will be able to include some of the other entries in future editions, but don’t let that stop you sending in poems! I love how both of these poems capture how the weather can affect and sometimes reflect our feelings. This seemed very appropriate for our spring edition. Congratulations Saskia and Abigail – you’ll be receiving book vouchers in the post thanks to our friends at Time Out Bookstore!
Winner – over 15 category Piha Beach Nightmare Turns Good
By Abigail Knight
So many nights, I sit by my window waiting for someone to rescue me.
The waves crash around me, the wind is howling like werewolves and sharks surround my boat.
I’m scared, cold and lost What am I doing here? The senses from the deep sea lurks, I look out the window to the beach, my friend is calling out to me faintly. So I turn the boat around and takes me back to my friend.
Winner
– 15 & under Poem by Saskia Manning
The sun makes me happy The rain makes me sad The wind makes me laugh And the snow makes me glad
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Poetry Page
NEO Notes
Kia Ora
What does the NZDSA do?
You will have noticed that for a number of editions of CHAT 21 I have focussed on responding to a frequently asked question “What does the NZDSA do”? In this series, I have shared the following areas of foci for the NZDSA:
• systemic advocacy as a means to influence changes in policy and processes so that all people with Down syndrome can benefit and enjoy more equitable access to the same rights as all New Zealanders
• securing funding to deliver our core information, support and systemic advocacy work as well as all the additional projects we undertake as the NZDSA receives no government funding
• celebrating: people with Down syndrome; the incredible contributions of our regional groups and all our volunteers
• raising awareness of Down syndrome in the wider community to bring about social change and transform our communities and society, and
• creating and providing a hub of resources across a wide range of topics and issues for our members, professionals and the wider community.
In this edition of CHAT 21 I thought I would focus on educating and empowering our members and the wider community. The NZDSA has traditionally focussed on providing face-to-face workshops, road shows, seminars or forums on a range of topics for parents, whānau, people with Down syndrome as well as educators, health professionals, support people and other interested professionals. The purpose of these workshops were, and are always to educate on specific topics and to empower participants so that we can achieve our vision that people with Down syndrome are respected, valued and equal members of their community fulfilling their potential and aspirations. Whilst all these educational opportunities were supported by our members, we still found that it only reached a small percentage of our community as location and costs prevented many people from participating. The NZDSA has limited resources so it was difficult to offer workshops in all areas of New Zealand. So, we explored how we could address this need and, whilst COVID-19 has had so many negative impacts on our community, one positive outcome is that we have all become more comfortable with online formats. So, in 2021 the NZDSA embraced technology and offered a range of education opportunities for our members and this included online sessions on Wellbeing, Speech and Language Therapy, Down syndrome and Autism, and our 1st Virtual Conference.
In 2022, we have also collaborated with Care Matters to bring an online seminar series on the Enabling Good Lives approach. We have continued to host sessions in our Wellbeing Series and will be launching the final episode in November 2022.
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Creating a good life for people with Down syndrome often means going flatting, but where do you start and how do you go about doing this? We are pleased to share that Kaye Young will join us online on the 8th November at 7pm to share how she achieved this goal. This session will be of particular interest to parents who are interested in flatting for their child who has Down syndrome and Autism but it will be a session relevant to all families. Another event not to miss is the NZDSA’s 2nd NZDSA Virtual Conference in October.
Down Syndrome Awareness Month – 2nd Virtual Conference
I hope that you will take time during October to celebrate Down Syndrome Awareness Month. We hope to see you at the Virtual Conference which the NZDSA is hosting from the 3rd to the 21st October. It isn’t too late to register and you can find information about the Virtual Conference on the NZDSA website and Facebook. The NZDSA will continue to organise online events that will educate and empower our members. If you are interested in specific issues please contact me neo@nzdsa.org. nz.
Down For Love has spotlighted relationships so we are busy organising workshops for parents and people with Down syndrome and will be advertising the dates via social media and Enews. Hosting workshops, seminars, conferences, meetings, and hui are also means to educate and empower our members as well as the wider community so that we build inclusive communities.
1st July heralds ground-breaking changes for disabled people and their whānau I am sure you joined in the celebration of the establishment of Whaikaha - Ministry of Disabled People. It is a world first! We have to acknowledge the tireless advocacy, leadership and partnership with disabled people, Māori and government to establish Whaikaha, with the vision to transform the lives of many New Zealanders.
The NZDSA was delighted with the news that Te Kawa Mataaho Public Service Commission appointed Paula Tesoriero MNZM, to the position of Chief Executive, Whaikaha - Ministry of Disabled People. Paula is an ally of the NZDSA and we certainly concur with Minister Williams’ statement: “we are delighted that someone of this calibre, who has experience, mana and deep connections to the disability community has been appointed to this important role”. I am sure you all join the NZDSA in congratulating Paula and trust that with her leadership, Whaikaha will achieve its vision to transform the lives of many New Zealanders.
Another significant change on the 1st of July 2022 was that New Zealand moved to a new national health system with the establishment of Whatu Ora - Health New Zealand and Te Aka Whai Ora / Māori Health Authority. We realise at first it will be business as usual, but we have heard the rhetoric that transforming the health system will create a more equitable, accessible, cohesive and people-centred system that will improve the health and wellbeing of all New Zealanders.
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So, remember that when you are engaging with the health system, hold people accountable to ensure their practice reflects these guiding principles:
• People-centred: a system that brings together the voice of all communities
• Equitable: a system that focuses on working in partnership with Māori and honouring Te Tiriti o Waitangi
• Accessible: a system that offers more equitable, convenient, and integrated access to services for all New Zealanders
• Cohesive: a national health system that delivers locally, supported by coordinated planning and oversight.
Employment Resource
The NZDSA recently launched a partnership with Kindred – Psychology at Work who will be developing a range of resources to support more people with Down syndrome into work. Kindred is a boutique Organisational Development Consultancy run by two organisational psychologists, Georgina Kirk based in Wellington and Kate Maroulis based in Auckland. They offer a wealth of experience partnering with public and private sector organisations in the design and implementation of organisational development systems. They are passionate about creating more inclusive workplaces and know the lifechanging impact that being included in work can bring to an individual.
The NZDSA is delighted that George and Kate are so excited to donate their time to develop a toolkit of resources. The resources will be designed for people with Down syndrome, employers, parents/caregivers and whānau. To gain an understanding of what is needed they would love to hear from employers, parents/caregivers/whānau, and individuals with Down syndrome about their experiences and the resources they feel would help them.
With that in mind, we would love to hear and share stories of the work that you do. We are asking people with Down syndrome and their employers to get together and film a short video of you at work answering the following questions:
For people with Down syndrome:
• Tell us about your job.
• Tell us about the things that you do at work.
• What are the favourite parts of your job?
• What does having a job mean to you?
For Employers:
• Can you tell us a bit about your company?
• What does inclusion mean to you in your workplace?
• Can you tell us about some of the positive aspects of having someone with Down syndrome as part of your team?
If you want to share your story but would prefer not to be on camera, we still want to hear from you – just send us a written story.
We would like to share these stories with our network to raise awareness. This may include online via our website and social media, so please make sure that anyone included in the videos is comfortable with this. Please also make sure your video is no longer than 2 minutes and is filmed in a landscape format.
Please send your videos to Zandra neo@ nzdsa.org.nz before the 31st October. The NZDSA will also produce a video, so if you are in Auckland and would like to share your story, please email me on neo@ nzdsa.org.nz
For further information about Kindred: www.kindredwork.co.nz and you can contact George on george@kindredwork. co.nz or Kate on kate@kindredwork.co.nz.
NZDSA AGM 2022
I hope you will join us on the 19th October at the NZDSA online AGM meeting. At the AGM we will present the NZDSA’s Annual Report. If you would like to read the NZDSA’s Annual Report, please email me (neo@nzdsa.org.nz) and I will email you a full copy.
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Southern Stars
The NZDSA is very grateful that Southern Stars, a non-profit organisation, supports the NZDSA by running an annual telephone appeal on behalf of the NZDSA. These appeals are extremely important to the NZDSA because we receive no government funding so the donations we receive from the annual telephone fundraising campaign enables the NZDSA to raise awareness and support ongoing work. Previous appeals have enabled the NZDSA to produce a number of resources and to host camps and workshops for people with Down syndrome.
The focus of the 2022 Southern Stars appeal, which ran from 11th July to the 26th August 2022 was for three critical projects:
• The first is to host our annual Youth Development Camp at Vaughan Park Retreat Centre and MERC, Long Bay, Auckland in November 2022. This camp will focus on building self-esteem, wellbeing, gaining independence and confidence, as well as some activities like rock climbing, archery, and abseiling.
• The second is to publish and distribute our quarterly journal, CHAT21.
• The third is the vital information and support service the NZDSA provides to people with Down syndrome, their whānau and professionals.
The NZDSA is very grateful for the support provided by the small, but very dedicated team at Southern Stars.
Rose Awards
I haven’t received a nomination for a Rose Award for a number of editions. 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 me on neo@ nzdsa.org.nz any 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 CHAT21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.
Notices
Just a reminder to look at the NZDSA notices which include:
• a call for expression of interest in accessing the NZDSA Numicon kits
• nominations for the 2023 NZDSA National Achievement Awards.
Special Olympics National Games
I would like to extend my best wishes to all the athletes competing in the Special Olympics National games. I hope that you all enjoy the experience, that you achieve your personal goals and that you form lasting friendships. I look forward to hearing and reading all about your personal achievements.
The
Down syndrome community of Aotearoa New Zealand remember Lena Zhang Harrap and her loved ones at this time of year. Rest in peace Lena.
Hei konei rā Zandra
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President’s Pen
By Kim Porthouse
This edition has a theme around siblings. My preconceived views were that siblings were just as often at war with one another as they were great mates, and parents were often forced to act as referees between siblings sorting out squabbles, one picking on the other, and to be discerning when one was trying to get the other into trouble. But for me, I've always been appreciative that I didn't seem to need to be the referee parent too often. Instead, as kids my boys generally seemed to get along and have a special bond. Chris was always the leader and Brendon went with the flow which I guess made things more harmonious, but I’ve often wondered if that was down to personalities or if maybe it was partly because Brendon had Down syndrome, so Chris developed an innate sensibility around Brendon having some additional needs that bought out awareness not always seen in children. I think it is probably a mix of both.
As I write this, I can almost hear some of you saying “come to my house, my children fight just like in any other family, no particular sensibilities here!” Let me assure you we did have our moments too! And I have to admit now, as an adult, Brendon is far more assertive with his brother and certainly lets everyone know if he isn't happy with him! Unfortunately, with Brendon’s autism and preference to be non-verbal, Brendon does not partake in conversation so communication isn't easy, even between family members, and this means that my sons don't do a lot of mate-like things that perhaps other adult brothers may normally do. Despite this, there is still an obvious kinship between them.
Whilst behind closed doors siblings will always have their quibbles about each other, our children’s siblings are also their biggest allies. I know with my own sons, right from early school years, Chris was very protective of Brendon. That protective attitude has flowed through to adulthood where he will not only stand up for his brother but has become a defender of people with a disability in general. If he hears anyone saying anything unkind or derogatory about a disabled person, he is quick to shut it down and defend their right to be in society. He wants them to be treated like any other human and to get a fair deal because this is what he wants for his brother. I see this sensibility time and time again in the siblings I meet. We can be very proud of the siblings in our community. They each are helping to make society more inclusive. Being a sibling seems to bring to them an extra dimension of character that creates extraordinary humans that have compassion, humility, civility, and resilience.
Over my years of involvement with the Down Syndrome Association I have been privileged to observe the bond between many siblings of all ages; it is a very special thing. Some siblings have really become champions of people with Down syndrome and we have been lucky enough over the years to have several siblings work for the NZDSA in a number of roles, including support workers at camps and events. In my experience, siblings really bring their love for their brother or sister to the role, and it gives them a passion to do their best for our community. NZDSA is a family/ whānau run organisation; the Governance committee must be made up of parents
or siblings and, wherever possible, we will look within our community for the right staff member. We are fortunate to currently have several amazing siblings that share their talents for the benefit of the NZDSA and people with Down syndrome. I would like to take this opportunity to thank some remarkable siblings who currently work for NZDSA and often go above and beyond: Dan Te Kaat - graphic designer and marketing/promotion; Jess Waters - Social Media Officer; and Siobhan Vaccarino who works on a casual basis as a support worker and an administration assistant. We really appreciate everything you amazing humans do for the NZDSA and the Down syndrome community as a whole.
Lastly, I share some joyous news for our family: a few weeks ago Chris became a Dad, and thus Brendon became an uncle –he is over the moon with his little nephew. Along with a couple of photos of the brothers, I couldn’t help but share a photo of when Brendon met his nephew for the first time.
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Left: Brendon meets baby Gordon
Right: Chris & Brendon
Music Therapy — “Putting the pieces together”
by Paula Beguely
Making music has always been a source of joy for me – particularly singing in a choir, playing music in a concert or for a stage show, or a smaller group for a wedding. No matter how out of sorts I felt before a rehearsal or performance –I always felt GREAT afterwards. I loved working together with others to achieve something amazing that would bring joy to other people.
When Charlotte was six months old, we started attending a music and play group for children with disabilities run by Margaret Davidson, retired paediatrician –and music lover.
At first, I was completely terrified of these encounters. I wasn’t sure if I was ready to meet other parents or see other children with “disabilities”. I didn’t realise that this is EXACTLY what I needed, and what Charlotte needed too.
This little group became my refuge, my social connection, a place where we were accepted and welcomed with open arms. A place where I could connect in a lovely way with my child – without worrying about anything else. After every session we left feeling lighter, happier, and more connected to this little community – but also to each other.
It allowed me to slowly form friendships with other carers – many of whom are now close friends.
Music allows us to put aside our inhibitions – and gives a way to communicate even when we are too young to have words. Listening to music, playing instruments, moving to music, and singing is an amazing way to build communication, trust, and is a lovely way to build friendships –especially when verbal communication is challenging.
For little ones, music can enhance many social skills – listening, turn taking, copying actions, participation, and concentration and improves memory. Action songs are a great way to improve auditory memory, as the physical action paired with the song words helps our children to remember words and understand their meaning.
As a parent, my favourite part is seeing my child’s reaction to the music – the songs she likes, and doesn’t and best of all when she was old enough to copy the songs, and sing them to herself at home. Much of our learning at home is turned into songs – the repetition, actions and rhythm having a huge impact on memory and speech.
Margaret Davidson and her wonderful crew of volunteers host face-to-face events fortnightly at 130 Remuera Road – this is the courtyard meeting room at the back of St Lukes Presbyterian Church. The room is lovely, opening onto the courtyard, coffee, tea and often homemade goodies are provided for carers.
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There is a morning session for 18 months – 4-year-olds, and an early afternoon session for 0-18 months. It is a wonderful, non-judgemental environment where parents of children who are differentially abled can meet each other and make connections.
Along with our Auckland Down Syndrome Association coffee groups – this music group is a key meeting place for parents of children with Down syndrome in Auckland. Music group was suspended in lockdown – but after so many sessions cancelled – Margaret Davidson called me, to talk about the option of trying this on zoom. Knowing how much I had benefited from this group, and how much Charlotte still enjoyed the songs – I thought this was something that could work. “let’s try it –even if it’s just to get the mums on for a chat”.
In Term 4 2021 we were able to provide 6 zoom sessions at 10am on a Wednesday morning. It was fantastic to see that some families were able to join in – we had between 4 and 6 families each time – some who had never been to the faceto-face group, so were tuning in to meet new people.
Margaret and I shared the hosting, along with some lovely loud singing from the children!
It was a nice chance for carers to set aside some time for bonding with their little ones, seeing some familiar faces, and to see the children’s faces light up at the sound of familiar songs.
It is always great to remind ourselves that we are not alone. Many families in our community are remaining “distanced” until their children can be vaccinated, which presents many social and mental health challenges.
A great thanks to Margaret for her continued commitment to this group and generously sharing her knowledge and expertise.
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IHC Library
In this library update we have mainly focused on what it is like to be a sibling of someone with a disability, particularly someone with Down syndrome.
If you are interested in any of these items or would like to know what else the library has please contact your library team (Phil, Ros and Michael) on 0800 442 442, email them at librarian@ihc.org.nz or visit the online catalogue at https://ihc.mykoha. co.nz/ You can watch their library video at https://www.youtube.com/ watch?v=AunmBYTIZTM
New journal article: Growing up with a brother or sister with Down syndrome: Adult siblings’ perceptions of their childhood relationships
By Lemoine, Lise and Schneider, Benolt
Series: Journal of Intellectual & Developmental Disability ; 47 (1) 39-52: 2022
The sibling survival guide: surefire ways to solve conflicts, reduce rivalry, and have more fun with your brothers and sisters
By Dawn Huebner
Summary: Having a brother or sister can be tough. It can also be great, but it’s hard to see the great parts with so many bad parts getting in the way. Problems like fighting and bossing. Teasing and jealousy. Tattling. Pestering. And more. But what if you could do something about those problems? Clear them away? Then you’d be able to actually enjoy your siblings! This indispensable guide from bestselling author Dr. Dawn Huebner speaks directly to children ages 9-12, teaching skills to help them manage feelings and resolve conflicts, strengthening the bonds between brothers and sisters. Warm, witty and packed with practical strategies, this interactive book is the complete resource for educating, motivating and empowering siblings to live in peace. – BOOK JACKET
What happens when someone in my family has Down syndrome
By Jill and Sam Keppeler Summary:
“Everyone on Earth is different. Kids who have someone in their family with Down syndrome might wonder about their family member’s unique differences. This title will help children who have questions about Down syndrome. What is it and how is their family member different? How can young readers respond to questions from their own friends about their family member? The age-appropriate text and full-colour photographs presented in this sensitively written book will help children tackle questions and situations that might arise”-- Provided by publisher. Also available as an eBook
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IHC Library
A
World
Without
Martha: A Memoir of Sisters, Disability, and Difference
By Victoria Freeman Summary: “Victoria Freeman was only four when her parents followed medical advice and sent her sister away to a distant, overcrowded institution. Martha was not yet two, but in the 1960s Ontario there was little community acceptance or support for raising children with intellectual disabilities at home. In this frank and moving memoir, Victoria describes growing up in a world that excluded and dehumanized her sister. She writes too of her own journey to understand the policies and assumptions about disability that profoundly affected her entire family. Despite society’s long insistence that only a “normal” life was worth living, changing attitudes to both disability and difference would eventually offer both sisters new possibilities for healing and self-discovery. A World Without Martha documents the collateral damage of institutionalization on families, as well as the ties, both traumatic and loving, that bind family members to one another over the course of a lifetime.”BOOK JACKET
Beauty exposed: captivating stories of life with siblings who have Down syndrome
By Chloe Goulding Great book by a sibling of a child with Down syndrome! She collected stories from other siblings to get their perspective of having a brother or sister with Down syndrome, and she did a fantastic job with this book. The stories are grouped by ages of the siblings, and the stories chosen are real, and raw and beautiful. Highly recommended. - Amazon, review
Fasten your seatbelt: a crash course on Down syndrome for brothers and sisters
By Brian Skoto Brian and Susan both have extensive professional experience working with and advocating for those with intellectual disabilities with an emphasis on Down syndrome. They have jointly produced a delightful and intriguing book, full of answers on a wide range of questions any sibling is liable to ask or secretly worry about. The questions were originally asked at a brothers and sisters conference they had attended. The theme of fastening a seatbelt is carried through in both the chapter headings and the corresponding illustrations. Headings that include Gearing up to go; getting the facts about Down syndrome; Backseat driver: Handling your family issues; Detour ahead: sorting out your feelings. This book will prove a supportive inspiration for all siblings and families that are coming to terms with their understanding of Down syndrome and how it will affect them throughout their future shared lives.
I Love You Natty: A Sibling’s Introduction to Down’s Syndrome
Mia Goleniowska, Hayley Goleniowska. Review:
Beautifully illustrated, this picture book tells the story of two sisters, their feelings, and relationships both with each other as well as with friends and school peer groups. Written from the older sister’s point of view we see how Alicia May, who has Down syndrome, behaves, what her interests are and how she reacts in various situations. This is a touching account of a real-life relationship which could be an excellent introduction for siblings into the mind set and behaviour patterns of a child who has Down syndrome.
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Kim Porthouse
President 0800 693 724 president@nzdsa.org.nz
Gwen Matchitt
Vice President Zone 2 Representative Waikato, BOP & Taranaki 0800 693 724 zone2@nzdsa.org.nz
Angelique van der Velden
Zone 5 Representative Ashburton & all areas above 0800 693 724 zone5@nzdsa.org.nz
Bev Smith
Zone 1 Representative Northland 0800 693 724 northland@nzdsa.org.nz
Zone 3 Representative Whanganui, Manawatū, Gisborne & Hawkes Bay 0800 693 724 zone3@nzdsa.org.nz
Maia Faulkner Zone 1 Representative Auckland 0800 693 724 auckland@nzdsa.org.nz
Carey-Ann Morrison Zone 4 Representative Wellington & Wairarapa 0800 693 724 zone4@nzdsa.org.nz
Glen Jelley Zone 6 Representative All areas below Ashburton 0800 693 724 zone6@nzdsa.org.nz
Averill Glew
Self-Advocacy Portfolio averill@nzdsa.org.nz
Zandra Vaccarino
National Executive Officer 0800 693 724 neo@nzdsa.org.nz
Daniel te Kaat Graphic Designer 021 22 333 93 daniel@slaughterhaus.co.nz
Paula Beguely Auckland Community Liaison Officer 0800 693 724 clo@adsa.org.nz
Kathryn Sadgrove
Northland Coordinator 0800 693 724 ksadgrove@xtra.co.nz
NZDSA Socials
Linda te Kaat
National Administrator 0800 693 724 na@nzdsa.org.nz
Shelley Waters Treasurer treasurer@nzdsa.org.nz
Sarah Paterson-Hamlin CHAT21 Editor editor@nzdsa.org.nz
Jess Waters
Social Media & Information Officer hello@nzdsa.org.nz
Pauline Marshall Canterbury Community Liaison Officer 0800 693 724 cdsainc@gmail.com
The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories. facebook.com/NZDSA
Follow us on Instagram to see what our communities are up to at nz_down_syndrome
Check out the NZDSA’s website at nzdsa.org.nz
Sandra Slattery
Taranaki Community Liaison Officer 0800 693 724 taranakidownsyndrome@gmail.com
NZDSA Membership
Membership is now done online. For all details please go to www.nzdsa.org.nz or for any queries please ring 0800 693 724. If you have not received an email to update your membership online please call the number above.
Donations
The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you can make a donation big or small, please go to www.nzdsa.org.nz or ring 0800 693 724.
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NZDSA Committee
NZDSA Staff
Contact Directory
Regional Liaison Officers
Announcing the NZDSA Annual General Meeting
When: Wednesday 19th October, 7pm
Where: Online – Zoom Meeting ID: 851 1606 3562 Passcode: 099604
RSVP: By Friday 14th October 2022 to Linda te Kaat na@nzdsa.org.nz Closer to the time we will share the zoom link via Facebook and Enews.
Please check our website www.nzdsa.org.nz for any updates regarding the AGM.
Numicon Kits: Calling For Expression Of Interest
Yes, now is the time to start thinking about whether you would be interested in loaning the NZDSA Numicon kits for 2023. Numicon is a multi-sensory, structured maths programme. If you would like to know more about Numicon the website is http://www. numicon.co.nz/
• The NZDSA has 16 kits to loan to NZDSA members.
• These kits can be used at home or school.
• The loan period is from February/March to the end of November.
• The NZDSA does require you to pay a refundable bond of $60.00.
• The NZDSA will reimburse you the $60.00 bond if the kits are returned clean and complete.
• The only cost to you is the courier and handling fee which is $30.00 and the cost of returning the kit to the NZDSA. If you would like to loan a kit please email Linda te Kaat by Monday, 31st January 2022; na@nzdsa.org.nz
NZDSA National Achievement Awards
The NZDSA is calling for nominations for the NZDSA 2023 National Achievement Awards. These awards recognise the accomplishments of people with Down syndrome during 2022. If you would like to know how to nominate a person please email Linda te Kaat at na@nzdsa.org.nz
The NZDSA has curated information on COVID-19 on our website
The NZDSA attends MoH disability engagement meetings so please contact Zandra neo@nzdsa.org.nz if you have experienced difficulties in accessing vaccines. The NZDSA will be sharing the latest information available from the Ministry of Health and resources in our COVID-19 EBulletin.
Websites that have the latest and best sources of information
• https://covid19.govt.nz/
• https://www.health.govt.nz/our-work/ diseases-and-conditions/covid-19-novelcoronavirus/covid-19-information-specificaudiences/covid-19-information-disabledpeople-and-their-family-and-whanau
Thanks
Thanks to the following funders and sponsors who have made donations to the NZDSA this financial year:
• Lottery Grants Board
• Bluesky Community Trust
• COGS: Christchurch
• COGS: Auckland City
• COGS: Coastal Otago
• COGS: Manukau
• COGS: Whangārei
• COGS: Waitakere City
• Holsworth Charitable Trust
• Eastern & Central Community Trust
• The Catholic Women’s League of Aotearoa New Zealand
• Ministry of Health
• Ministry of Social Development
• Joyce Fisher Charitable Trust
• Pub Charity
• Rata Foundation
• T G Macarthy Trust
• Lion Foundation
NZDSA Notices
Top left: Benjamin Khong - Matariki Art
Top right: Carlyle siblings
Centre: Toby (7) and Mya (10) Wilson from Tauranga, camping at Mt Maunganui. One of Toby’s favourite things is playing on the beach with his big sister who he adores.
Bottom left: Lulu with siblings Isaac, Sophia, and Cooper
Bottom right: Siblings and best frenemies, Cooper and Belle Bulled
Our People