Special Olympics gives small children a big leg-up

Young children are getting a big leg-up from a Young Athletes Sport and Play Programme running in Wellington in the lead-up to Christmas.

Special Olympics New Zealand is trialling the six-week programme for children between the ages of four and seven with intellectual disabilities. And, if the results follow overseas research, these children will develop motor skills twice as fast as children who don’t take part.

David Hibberd from Special Olympics New Zealand is leading the programme. He says the focus is about introducing basic sport skills in a fun and welcoming environment. The young athletes are also enjoying the activities with their siblings, families and friends. The sessions are being held on Sunday mornings, which encourages families to participate.

The activities are designed to develop basic sport skills such as running, kicking, throwing, balancing and jumping. There are 12 children signed up for this New Zealand launch of the Young Athletes Programme – two children aged four, two aged five, three aged six and five aged seven.

But David says there are closer to 40 people filling the court at the ASB Sports Centre in Wellington each week, including family members, lead coaches, five students from the New Zealand Institute of Sport and three Special OIympics Athlete Leaders – Michael Holdsworth, Oscar Stace and Vicki Brown. The three are all champion sportspeople and play an important role in training the young athletes. Michael has competed in swimming and skiing, Oscar in basketball and swimming and Vicki in athletics.

The Young Athletes Programme started after two weeks of initial training for the Athlete leaders and students, to develop their coaching skills, followed by six weeks of sessions. David says each session is reviewed to feed into the following session and families receive weekly updates throughout. After the final session the programme will be evaluated, and recommendations made about how best to introduce the programme more widely.

David says athletes must be eight years old to join Special Olympics clubs. He says part of the review of this programme will be the pathways that can be introduced afterwards. “It’s great getting these young athletes active, it is important this continues. We hope that some of the fundamental skills learnt during this programme will also be tried out in the home, at the park or anywhere else.

“Initial feedback received is that the programme is making a positive impact,” David says.

The IHC Foundation has contributed $8700 towards the Young Athletes pilot project.

Seeing is believing - research shows the benefits of music therapy

Ten 10 children with autism and 10 music therapists made music for a year – with convincing results. 

Victoria University of Wellington senior lecturer in music therapy Dr Daphne Rickson is conducting research to find out what benefits music therapy can provide for children with autism. The music therapists provided case studies from their sessions with the children to evaluators who were experts in autism and to a team of family and others who knew the children. Both teams assessed the effects of the therapy based on the case studies and their observations.

Daphne is now in the final stages of analysing the results and she is confident that the belief people have that music therapy benefits these children is backed by the evidence. 

“Children with autism generally are very musical and they have an interest in music and they sometimes have high-level skills,” Daphne says. “That was true for the 10 to varying degrees, but in every case the evaluators mentioned the children’s musicality, for example, their ability to beat in time and sing in tune.” 

Daphne says this major two-year research project, funded by the IHC Foundation, follows a smaller exploratory research project, in which one of the themes had been ‘seeing is believing’. 

“So that is why we went to this case study thing, because so many people said, ‘If you see music therapy, if you see it in action, if you hear the stories, you absolutely believe it’. It’s a strange situation to be in. Everybody believes in it and yet it’s really hard to pin it down.” 

Daphne says children with autism can find it hard to manage when they become stressed, frustrated and anxious because sensory regulation is difficult for them. “They can have high or low sensitivity to sound, high or low sensitivity to touch, and so on.” 

She says music therapy seems to help in sensory regulation, and from that starting point can also help with cognitive and emotional regulation. 

Daphne is planning to have her analysis completed by the end of the year and to write up her research after that.

Hear the Radio NZ interview with Daphne on the Upbeat programme.

Instruments of the World unite

Participants in an Arts Integrated performing arts programme this year plunged headlong into a world tour of musical instruments.

The Instruments of the World project started as part of the group’s class work. Tutor Sam Corry introduced a Latin American guioro and an African mbira to the class and before long participants started bringing in instruments of all kinds. The project grew with students researching the origins of their instruments – from Scottish bagpipes and Latin American maracas to the Hawaiian ukulele – and then they presented their findings, which were filmed by tutor Fiona McKenzie.

The project grew from looking at instruments to researching, playing and then presenting to the camera.

Arts Integrated is a performing arts course for young adults in Christchurch, with a special focus on enabling and inspiring those living with disability. It covers spoken word, acting, poetry, mime, dance and music and is largely student driven, responding to ideas generated by the group.

It has been providing programmes for people with disabilities since 2013, supporting up to 24 students at any one time to experience performance skills, partially funded by Hagley Community College. 

The IHC Foundation has supported Arts Integrated with funding towards the costs of employing an assistant tutor.

Gene team seeks answers for more families

A University of Auckland ‘gene team’ has launched a new research project with 20 families to find the causes of more rare genetic conditions.

Following hard on the success of a pilot project with an initial 20 families, researchers Dr Jessie Jacobsen, Professor Russell Snell and Associate Professor Klaus Lehnert from the university’s School of Biological Sciences and Centre for Brain Research are now recruiting families for their new study.

In the pilot project, from 2016–2018, the team was able to find the genes and mutations responsible for rare conditions in 14 children – a better result than they were expecting. Russell says the success rate of the first study means that clinicians have waiting lists of families who want to be involved. “There is a lot of interest out there – there is a major unmet need,” he says.

“Our discovery rate is equal to the best groups in the world and there aren’t many best groups in the world. It’s because we take a lot of care with every variant and we don’t apply carte-blanche filters.”

These scientists are gene detectives, doing painstaking work to examine DNA and find where genes might be deleted or duplicated. Klaus, a functional biologist, works to understand the molecular mechanism through which genetic variations cause disease. He uses computers to analyse large and complex data to identify these genetic variations.

Like the pilot, this latest research will be funded by the IHC Foundation. This time the Foundation is contributing $197,000, which includes funding a post-doctoral researcher to work on the project.

The team’s goal is to give children, their doctors and their families a diagnosis and a way forward. The researchers also want to build more evidence for their new cost-effective approach to genome sequencing that is achieving world-class results. How quickly the research translates into routine clinical practice will come down to advocacy by parents, clinicians and parent groups.

Jessie says traditional gene-screening approaches often fail to deliver genetic diagnoses for rare genetic conditions. “This reduces hopes for future treatments, makes assessing the risk of future pregnancies difficult, and has the prospect of lengthy and costly ‘diagnostic odysseys’.

Most participating families will be referred by their clinicians. But Jessie says families who have a child with a neurodevelopmental condition are welcome to approach them directly about opportunities to participate in the research.

To find our more, email j.jacobsen@auckland.ac.nz

New approach to gene testing provides answers for families

Guides for lawyers safeguard vulnerable people

A free online resource designed to ensure fair treatment under New Zealand’s legal system for vulnerable people is now available for use by lawyers and judges. 

A team of disability and legal experts have developed Benchmark, a set of guidelines to protect people’s rights and improve their access to justice. Benchmark is funded by the IHC Foundation and the New Zealand Law Foundation.  

The project was sparked by research showing that people with intellectual disabilities were not being treated fairly in our legal system. Some people detained under compulsory care orders were serving much longer sentences than if they had gone to prison, they were vulnerable to pressure to confess and plead guilty, and found it more difficult to access parole.

Benchmark includes guidance on pre-trial case management for vulnerable witnesses and working with court-appointed communications assistants. There are also guides for dealing with children, older adults, fetal alcohol spectrum disorder and intellectual disability, and mental distress. 

Donald Beasley Institute Dr Brigit Mirfin-Veitch, who led the led the Benchmark project and the earlier research work, says the guidelines are a collection of best practice with vulnerable people. Knowledge and experience have been shared by lawyers with an interest and involvement and understanding of the issues. “What we want to do is to make these practices much more commonplace,” she says. “I think we are starting to change. There is a growing awareness that we need to do things differently.”

Three further guides are being developed - for people with autism spectrum disorder, mental distress and people who are hearing impaired. Brigit says she also envisages the resource expanding in future to include migrants for whom English is a second language and other potentially vulnerable population groups.

Dane grabs his America’s Cup moment

For Dane Muir, possibly the best thing about sailing is being in a boat with his friend Darrell Smith – or better still getting his photograph taken with Darrell and the America’s Cup.

Dane was there when Sailability Wellington Trust recently opened its new all-tide jetty on Porirua Harbour. The America’s Cup made a special guest appearance at the Titahi Bay Boating Club, loaned for the event by the Royal Yacht Squadron in Auckland.

Dane, who is an IDEA Services client in Porirua, sails most Thursdays with Sailability Wellington. The organisation offers people with disabilities the opportunity to sail.

Dane and Darrell, a double amputee, enjoy a regular joke when they meet. Every week Dane will ask Darrell where his legs are.

“I might just say they are in the car, or they are having a rest at home,” Darrell says. Darrell has been sailing since he was a boy, but has become progressively disabled with a condition that eventually meant the removal of both legs.

Darrell has been volunteering with Sailability Wellington for eight years. Dane has been sailing for six years and he is on deck every week if the weather is good and the tide is right.

Sailability Wellington Trust Chief Executive Don Manning says almost 190 people sail with Sailability Wellington in various locations around the Wellington coast, supported by 70 volunteers, and there are 90 on the waiting list.

The IHC Foundation has supported Sailability Wellington since 2015. The Foundation’s most recent grant, in October 2018, was $15,000 towards the expansion of the sailing programme and to increase participation of sailors from Porirua, Kapiti and Horowhenua.

The Titahi Bay Boating Club’s existing jetty was strengthened to support the new jetty, which now extends into the harbour by five metres, linked by a walkway and ramp. This gives Sailability Wellington a further 50 square metres of rigging space to set up masts and sails and new floating pontoons will provide all-tide sailing.

All-wheel event brought magic to Auckland's waterfront

Inclusive performance company Touch Compass and friends brought magic to Auckland's waterfront with an all-wheel illuminated parade to mark Matariki and celebrate diversity.

The free family event, InMotion Matariki, was part of Auckland Council’s Matariki Festival in July in 2018.

Parade-goers with and without disabilities enjoyed a series of performances as they travelled from the Wynyard Quarter to Queens Wharf.

IHC Foundation contributed $25,000 towards the costs of supporting performers and audience members with intellectual disabilities. Performances included works from community and youth groups, the opening production in Silo Park, and a number of sensory art installations for parade-goers.

InMotion Matariki will run for the third time in July 2019. As well, the Auckland Tourism, Events and Economic Development Agency has included InMotion Matariki in their new Winter Festival for 2019.

Touch Compass plans to continue developing the event, and looks forward to more input from stakeholders in the intellectual disability community.

Pre-schoolers with autism are playing to learn

Upper Hutt mother Tabitha Harlow is trying a different way of playing with her two autistic pre-school daughters, Mackenzie and London, to support their development. 

She is practising a play-based therapy called the Early Start Denver Model (ESDM), which has been developed in the United States for pre-schoolers. Tabitha and the girls joined one of the playgroups that have been running each term this year, through Victoria University of Wellington. 

The ESDM team at the university’s School of Education is providing the early intervention programme alongside research to evaluate its impact. Learning is embedded in normal routines and skills are taught through play-based activities. The services on offer include one-to-one ESDM therapy, parent coaching, playgroups and workshops offering practical strategies for parents. The programme is funded, in part, by the IHC Foundation and led by Dr Hannah Waddington and Dr Larah van der Meer, who are both lecturers and ESDM therapists. 

Tabitha and the girls went to an ESDM playgroup once a week for eight weeks in the first term. “I would have loved to have kept doing it. It really was fantastic.” She says the team would play with the children and then pull the mums aside. “They would find out what problems we were having and made suggestions about what to try.” 

Tabitha says from the time Mackenzie was a baby she didn’t make eye contact and wasn’t interested in faces. “She would do things like lining up her toys, and she seemed to be more interested in random objects than toys. After London was born, Mackenzie started having meltdowns.” 

She says she began to suspect that London was also on the spectrum when she was about three months old. London did not make eye contact either or show interest in faces. The sisters don’t relate well to each other. “They are not very happy to be in each other’s spaces a lot of time.” 

Mackenzie, now three-and-a-half years old, was diagnosed with autism a year ago. London, nearly two years, was diagnosed at 18 months. But Tabitha says attending the playgroup had boosted her confidence in helping the girls to communicate. Now when she plays with the girls she focuses on what they are interested in at that moment and doesn’t overdo the language. “It’s just changing the way you interact with your kids all the time.” 

ESDM therapy focuses on relationship-building between families, the therapists and the children, and aims to support children with autism across all areas of development. Hannah Waddington says the ESDM team has been working with more than 25 families this year and the main goal of the playgroup is to empower parents to use these strategies so they can be comfortable and confident.  

They are looking for improvements in imitation, communication and engagement – all skills that children with autism can struggle with. Hannah says international clinical trials of the therapy are showing dramatic results for children, including increased understanding, improvement in language abilities and fewer autism symptoms.

Te Rito Gardens plans its next move

A community garden that supports people unable to get paid employment is starting again – from the ground up.   

Te Rito Gardens has been operating for nearly 10 years from the grounds of the old Porirua Hospital and has so far supported more than 240 people – many with intellectual disabilities – to gain practical and life skills. But Te Rito is on notice to move to make way for a housing development. It has been offered a new location with a long-term lease, but this is a bare site and the volunteers must now build the infrastructure needed to get their organics cooperative up and running again. 

Te Rito Gardens Coordinator Steve Wilson and his team of 24 volunteers plan to work out of two converted shipping containers until a more permanent building can be erected, and to set up a large covered area that will be used for plant propagation and workshop facilities. The gardens will be powered off-grid by a solar-powered system. 

The IHC Foundation has contributed $20,000 towards the installation of the solar panels and battery bank to run the propagation house and irrigation pumps. 

As hard as it is to uproot themselves and their plants, the Te Rito volunteers see many opportunities at their new flat and sunny site bordering Mitchell Stream in Raiha Street, Kenepuru, where they have a chance to build an even more sustainable enterprise. They are hoping that earthworks on the site will be completed by March 2019 and they will be in their new location by September 2019.  

The mains power at the Porirua Hospital site has already been disconnected so Mike Scaife of RM Software volunteered to install the off-grid power system at the current site so that they can continue to provide services until the shift. 

This is a small temporary solution to provide immediate low-storage AC power to the existing site. Stage two will involve fitting the remaining batteries, along with associated electronics and control systems. 

The solar-powered system, being paid for by the IHC Foundation, will power the irrigation pumps, control systems, lighting, fridge for seed storage, and a small office with tea-making facility. These will be run from a 24/48-volt bank of lead carbon battery cells and charged by solar panels mounted above the propagation structures. A small petrol-powered generator will be on hand for extended periods of insufficient sunshine. 

Te Rito’s main business is to supply local eco-sourced native plants, particularly for planting along riverbanks and in wetlands. It grows many thousands of plants from seed or by propagation. It sells these to local councils, environmental groups and is involved with the Enviro-schools programme, supplying plants to 10 local schools. 

Until recently it has been growing organic vegetables for sale, and this part of the operation will be resumed after the shift.

Jolt Dance school raises the bar

It’s not just the bodies that move in the Jolt Dance programme for primary school children. The dance company is shifting people’s thinking about who can dance and who can teach.

The integrated dance company is running a programme in Christchurch primary schools taught by Jolt Move trainees, all of whom have disabilities.

Jolt Diversity Dance Project is a new initiative as part of its Move Tutor Training Scheme. The project offers dance sessions for Years 3–7 students in mainstream primary schools. Up to 35 students are taught exclusively by the Jolt Move trainees in each session.

Jolt Artistic Director Lyn Cotton says the project was piloted in Christchurch primary schools last year and was a success with teachers reporting that the visits had a big impact on their students. The pilot was funded by the IHC Foundation in 2017 and the programme received further funding this year.

“It won't be the math strategies or how to paragraph that stand out for the children this year. It will be most definitely this experience,” said teacher Mandy O’Sullivan after a session at Somerfield School last year. “Diversity Dance is about movement but I also believe that it is a movement – it is a mind-set shift that all of society should be exposed to. It starts with the children.”

Last year the programme ran for four weeks of each term, this year it has increased to seven weeks a term and the programme is in demand. The Move trainees lead a 45-minute dance session that encourages students to express their individual dance moves and to work with others. There is also a 15-minute discussion time when the students can ask the tutors questions about their lives and gain a deeper understanding of what it is like to live with a disability.

Before the sessions, schools are sent an information sheet introducing the Move trainees. Each school can then decide if they want to prepare questions and discuss issues around disability or to leave the students to experience the session spontaneously.

The aim of Diversity Dance Project is to encourage young students to think about disability and difference in a new way. The trainees lead the sessions independently and the dance activities encourage students to watch others and be confident in expressing their own unique ideas. The hope is that students will gain an understanding that everybody is valuable and deserves to feel like they belong.

Lyn says she is committed to career progression for the trainees as dance teachers. “There is a whole assumption around it – that they can only be assistants or volunteers. “I don’t believe that. I think the only thing that is holding people back is opportunity and time,” she says. Lyn started with five trainee tutors in 2013 and has boosted their numbers to seven. She is still working with the same core group. They start as assistants in the community classes run by Jolt, then progress to teaching part of these activities, then finally to plan their own classes. The Diversity Dance Project was the most recent progression.

“What I love about my work is that I continued to be amazed at what’s possible and to think where can we go next. I have got to work out the ways that bring out the best in my guys.”

Christchurch Symphony Orchestra violinist Sarah McCracken and Zac explore music and movement.

Sailors tackle the choppy waters of Tauranga Harbour

Up to 75 sailors with disabilities have now signed up to tackle the choppy waters of Tauranga Harbour with Sailability Tauranga.

The group was formed in 2016 by former Tauranga Yacht and Power Boat Club Commodore Peter Dallimore, now Chairman of the Sailablity Tauranga Charitable Trust. They now have a small fleet – Hansa class 303 boats – and 50 volunteers committed to giving people with disabilities the opportunity to sail.

Early in May 2018, the group held its first Sailors Award Ceremony. Sailors were awarded certificates for individual achievements, such as courage, perseverance, taking the helm, regular attendance and going solo.

“For some, just getting into a boat was a challenge, to steer a boat an even bigger achievement and to sail solo is a massive step forward. It gives us all a great sense of fulfilment and joy to see the beaming smiles of our sailors as they come back into the dock after an hour on the water,” Peter says.

Since Sailability Tauranga purchased its own sailing dinghies in late 2017, it has been able to offer group bookings to community organisations. Of its 75 registered sailors, half sail on a regular basis. They come from a variety of organisations, including IHC/IDEA Services, The Blind Foundation, The Stroke Foundation, Tauranga Special School, Geneva Health and many privately enrolled sailors. 

Rhonda Ritchie, the Club Captain, says the group sails on four days each month in summer and for two days a month in winter. Each session is an hour long. On top of that, it runs a separate programme for schools. It has recently engaged with three secondary school special education units. Trial sailing days have been held with the view to channelling the students either into its regular sailing programme or setting up regular schools sailing days. 

Expanding its sailing opportunities in the future depends on being able to recruit and train suitable volunteers to operate safely on Tauranga Harbour’s exposed and challenging environment. “We do not have any sheltered sailing areas so our current fleet is always accompanied by at least two patrol boats requiring two crew members each and we will have to add a further patrol boat as our numbers increase.”

Funding provided by the IHC Foundation has helped to provide safety equipment, including a RIB (rigid inflatable boat) and motors.

New approach to gene testing provides answers for families

A new approach to genetic testing funded by the IHC Foundation has provided diagnoses of rare genetic conditions for 11 New Zealand families so far, with more positive results expected from a pilot programme.

A research team, led by Professor Russell Snell, Dr Jessie Jacobsen and Associate Professor Klaus Lehnert at the University of Auckland, used the latest genome sequencing technology to look for a genetic diagnosis for children with undiagnosed, rare neurodevelopmental disorders.

Twenty families from throughout New Zealand participated in a two-year pilot study to discover the genes responsible for disorders that couldn’t be explained through standard tests. The team hoped to provide answers for at least 10 of the 20 families but the results are even more encouraging.

Of the 20 families, researchers discovered the gene or mutation responsible for the condition in 11 individuals. These results will now be confirmed by a diagnostic laboratory and clinicians will discuss treatment options and other implications with the families.

The results from a further seven families are still being analysed but Russell says he is optimistic that they will be able to provide a diagnosis for at least half of these families.

Researchers were not able to provide a diagnosis for two families, but Jessie says the team has no plans to give up and will now look for more complex causes. She says they will look for things like deletions or duplications or more complex breaks in the chromosomal material.

“Sometimes I underestimate how brilliant it is to be able to provide a family with a diagnosis. Having an answer can be a real relief for the family,” she says. For families dealing with very rare conditions, it means they can connect with others elsewhere in the world for support and to share information. For others it will mean the end of a long ‘diagnostic odyssey’ to get an answer, or to know whether or not it is an inherited condition.

Russell says the team is achieving results with their streamlined sequencing process as good, if not better, than anywhere else in the world. “We are quite good at this. Most people use a simplified process that struggles to discover the very rare disorders.”

He says their process is more cost-effective than standard tests that screen gene by gene. The team sequences the whole genome of the affected individual but only 1 percent of the DNA (the exome) of the parents. Sequencing the exome – the protein-coding regions – is about half the cost of sequencing the genome. The exome is thought to harbour about 85 percent of DNA variations that cause disease. Their aim is to provide evidence to the Ministry of Health that this is the best clinical approach to genetic testing.

“It will simplify clinical genetics in the broader sense. If you do what we are doing you can replace all the clinical genetic tests with this single test – that is, sequence the genome and evaluate that. Because it’s simpler it will be more efficient and it will be cheaper in the long run. “It is of course hugely dependent on having biology experts with computer skills who can relate findings to the biology and we are very fortunate in having Klaus in our team.”

Former IHC Foundation Chair Sir Roderick Deane says the result of the research is great news. “I cannot tell you how pleased I am with the quality of this work and its outcomes. For parents to know what the problem is becomes hugely important to the families. “In the case of my wife Gillian and me, very many years ago, we did not know about our daughter Kristen having Rett syndrome until she was well into her teens. It was an agony not understanding.

“Some so-called specialists had the gall to tell us it was our ‘fault’ and others totally misled us with wrong diagnoses. In contrast, other medical people were marvellously supportive but did not know what the problem was. Then the specialist in the United States whom we saw wrote to us after we had returned to New Zealand and said she had just heard Andreas Rett talk at a conference and she immediately knew she had a patient with the syndrome. Even today, it moves me to think about it and what that information meant to us.”

Dr Juliet Taylor, Clinical Geneticist at Genetic Health Service New Zealand, says without this research many of the families would not have had access to the type of genetic testing that had the great chance of making a diagnosis. “The benefits of getting a diagnosis for these families are immense and include changes in medical management and/or reproductive options becoming available. Just as important, these families find out the reason why, and the benefit of this, for parents in particular, can never be discounted even many years after the birth of a child.”

The IHC Foundation funded the $147,000 cost of collecting and reading the DNA.

Gene researchers seek cause of rare disorders

When it started to rain there was standing room only

When it started to rain there was standing room only in the covered venues at InterACT 2017. But that was perfect.

It meant the workshops and classes at the annual disability arts festival at the Corbans Estate Arts Centre in Henderson were full of festival-goers wanting to have a go at the activities on offer.

In 2017, the IHC Foundation provided funding to Interacting Theatre to run InterACT2017 – a three-day festival showcasing performances, classes and workshops in Auckland. The Foundation has supported the festival since 2011.

The festival was held for the seventh year running in October-November. It attracted 4800 visitors over three days, there were 29 performances on the main stage, a wearable-arts parade each day and a display of artwork by more than 40 exhibitors.

Interacting Trust Chair Rod Wills said the wet weather on two days kept more festival -goers inside, who became the informal audiences for many of the workshops and drop-in sessions. Workshops were held in drumming, dance, clowning, hip-hop, looped recording music-making and masks. There were also drop-in sessions where participants could make comics and a poetry zine. Drop-in sessions included jewellery-making, face-painting and costuming.

Interacting community filmmaker Hank Snell made a documentary during the festival, assisted by festival participants.

Festival Director Paula Crimmens says the event is well-supported by special schools and disability providers. “It’s a great vibe. The atmosphere is terrific – it’s very affirming. When people ask, ‘Shall I perform?’ I say you will kick yourself if you don’t.”

Paula is now looking for performers to sign up for InterACT2018, which will be held at the same venue from 31 October to 2 November 2018. Email her on interactfest@gmail.com or phone 09 8495595.

For expressions of interest, go to www.tinyurl.com/interactfest18 

InterACT 2016 - Community showcase in sixth year

InterACT 2015 - Disability festival attracts crowds

Workshops build awareness of Fragile X

Fragile X school workshops send a positive message that people with the condition can achieve if they are given the right support and opportunities.

Since 2015 Fragile X New Zealand has received three grants from the IHC Foundation to run its ‘No Longer Fragile’ workshops in schools. 

The workshops – usually held five or six times a year nationwide – are run in schools where there are children affected by Fragile X syndrome.  The workshops are delivered free and their aim is to build inclusive communities.

Fragile X Executive Director Andrea Lee says despite Fragile X being the leading inherited cause of intellectual disability internationally, and easily diagnosed by a blood test, the genetic condition is not well known in New Zealand.

Andrea says her 13-year-old son was diagnosed at the age of three. “It was life-changing for us because we suddenly had access to information that explained many things we had struggled to understand about Andre. And it made a big difference to know a little of how he might be experiencing the world, about his sensory sensitivities and high anxiety.”

She says the condition has been widely studied and a lot is known about the neurobiology of the condition. “We understand what is happening in the brain and the impact that has on learning.” This information is shared through one-hour workshops in pre-schools, primary schools and high schools. 

“Instead of everyone having to research every time a child with Fragile X comes along, we go out to them and we individualise the information to the child, working together with the whanau and school community.” 

The request for a workshop usually comes from the family and after preliminary discussions with the family an approach is then made to the school. The aim is to build a partnership between the family and the school. “Hopefully, it supports and deepens the relationship the family already has with the school.”

Andrea says it’s about letting people see the world through the eyes of someone with Fragile X and to say “these are the things that will help the child or young person to be successful in your community”. 

“One of our aims is to show people they are not dealing with children who are choosing to behave badly.” Andrea says if a child is highly anxious they are unable to process what is being said.  However if the child can be supported to self-regulate then they can learn.

“What we are trying to say to people is when a child or an adult is in that state, that is compromising how they function. We are keen to send a positive message that people with Fragile X are really capable people, given the right support and opportunities to learn and develop skills.”

There is a high demand for the ‘No Longer Fragile’ workshops, but they are limited by cost and by the availability of those who are trained to deliver them. Andrea says there are already four lined up for 2018 with people who were on waiting lists from last year. 

Her son, Andre, now in Year 7 at an inclusive mainstream school, has made big progress. “We have been able to share with the school how he learns – what we call the Fragile X learning style. For example, we know that he learns visually and simultaneously, not sequentially. It has changed the way he has been taught to read.” She says students like Andre learn better if they can see the whole picture, rather than the learning being broken down into parts.  We know that visual applications work very well for helping students to learn to spell for example and he is very motivated by the use of technology.

Now you see me – young artists explore identity

The artists’ faces were everywhere – in photographs, in painted portraits and in amazing combinations of the two. And in front of the portraits were the artists themselves proudly exhibiting their work to the public – joyful and confident.

Between May and September 2017, 11 young people from IDEA Services in Henderson, Auckland, spent time learning about digital photography and then applying that knowledge to develop self-portraits. At the end of the course they held a six-week public exhibition at Zeal West – an organisation committed to developing creativity in young people.

The IHC Foundation contributed nearly $12,000 towards the 20-week course in photography and art. The project explored identity, focusing on what people and places mean to the participants.

In the first 10 weeks, the students were shown how to hold and shoot using digital SLR cameras, they learned about composition and lighting, and how to edit. A drone was used to capture aerial landscape shots of places they identified with. In the second part of the course, the images were manipulated to capture the personalities behind the images.

 Zeal West Programme Coordinator Naomi Reese says the idea is to nurture self-expression and to create a sense of belonging. The students – all between the ages of 20 and 26 – were all at different levels, but “their level of engagement is incredible and their level of patience with each other. For a number of them this would have been the first time they had handled a proper camera.” 

Photography Tutor Anieszka Banks says the students were focused and committed. Over the 20 weeks each of the students made remarkable progress in confidence but also in ability – from not being able to hold a camera or paint brush to being completely confident and using both unassisted. 

“The students loved working with the drone, which was dubbed the ‘flying camera’. “We integrated it into the lessons in a few different ways. I had a stack of coloured cards and I got the class to hide them throughout the park. Then we led JP (John Puleitu, the manager of Zeal West) on a treasure-hunt style adventure through the park with the drone. We watched the footage back on the projector to see him find each thing that we had hidden. 

“We also used the drone to take photographs of us as a group in different patterns and formations. This way the students got to see the link between how things on the ground level and how they looked from a bird’s-eye view.”

The youth organisation Zeal Education Trust has been working with young people in New Zealand for the past 18 years. It says it is committed to positively influencing young people through creativity. Zeal also engages with up to 500,000 young people online through its Live for Tomorrow programme, tackling issues such as mental health, identity, bullying, self-harm, alcohol and suicide.

The IHC Foundation has been supporting the Zeal Education Trust since 2014 and has funded barista training, music-making, photography and art initiatives in Auckland, Hamilton and Wellington. IHC Foundation Chair Sir Roderick Deane says Zeal makes a point of including young people with intellectual disabilities in its programmes. “This goes a long way to create a real sense of belonging and confidence.”

 [Caption: Mitchell Richards, 24, with his exhibition of self-portraits at Zeal West in Henderson.]

The other mothers knew what was going on

Doctors told Denise Bray that her 18-month-old daughter was vomiting because she had a virus. But it was the mothers of other children with Williams syndrome who told her what was really going on. 

Denise says it was the family’s first time at a New Zealand Williams Syndrome Association family camp. “My daughter was 18 months. She was just on solids and she was vomiting all the time and about three mothers said: ‘She’ll have Celiac Disease – get her tested’.”

So Denise did get her tested and the doctors confirmed it. “They said she had severe allergies and she was probably allergic to several things, but she definitely had Celiac Disease.”

No one understands what it’s like to raise a child with an intellectual disability better than other families struggling with the same issues. Intellectual disabilities, such as William syndrome, aren’t always well understood at the local medical centre and it’s often other parents who can throw the lifebelt at the right time.

“Because it’s quite a rare condition, the doctors in New Zealand often don’t know much in terms of day-to-day support. You get it from other parents,” Denise says. “Sometimes other parents can give you that invaluable advice as to what they have done.”

The IHC Foundation makes it a priority to fund organisations that support families. Top of its list of five priorities for funding are projects that build family networks and support access to information.

The Foundation has contributed funds towards the New Zealand Williams Syndrome Association’s biennial conference since 2012. The conference alternates between the South Island and North Island to make it as easy as possible for families to attend. As many 30 families come to the camps to participate in educational and support forums and to hear visiting experts provide updates on the latest research, treatment and support strategies. The association has between 80 and 90 members.

“Conferences for parents/caregivers and people with disabilities can make a huge impact through the sharing of information, resources, strategies and experiences,” says IHC Foundation Chair Sir Roderick Deane.

The association’s most recent conference, in Rotorua last year, featured Dr Melanie Porter, a Senior Clinical Neuropsychologist and Director of Director Centre for Research in Atypical Neurodevelopment at Macquarie University in Sydney. She is a specialist in Williams syndrome, Down syndrome and autism – and her research now includes New Zealanders as well.

To its previous conference, in 2015, the association invited American Developmental Psychologist and author Dr Karen Levine. She camped on site and spoke to families about how to coach children out of the phobias and anxieties they often experience – how to deal with the noise of thunder or even the lawnmower.

New Zealand Williams Syndrome Association Camp is a lifeline

Rett New Zealand brings in the experts

Rett New Zealand conferences make it possible for families to hear directly from international experts about  the latest developments in understanding Rett syndrome.

Since 2012 the IHC Foundation has contributed funds towards the Rett New Zealand Trust’s biennial conferences, which regularly feature American Rett education specialist Susan Norwell along with local medical specialists. 

Rett syndrome is a neurodevelopmental disorder that almost exclusively affects girls and has a profound effect on their ability to communicate. Susan Norwell has introduced New Zealand families to eye-gaze technology that allows them to communicate with their eyes.

Rett New Zealand conferences allow families to network with other families and professionals. They offer individual consultations between families and local and international experts, lectures on genetics, discussion groups and practical sessions on caring for someone with Rett syndrome. 

For the 2018 conference in Auckland in May, Susan Norwell was invited to talk to parents and teachers about supporting girls to learn to read and write through eye-pointing technology. 

Rett New Zealand Trust Chair Dugald MacBrayne says some girls with Rett syndrome can speak, but most cannot. “The ultimate cruelty is that some speak and then lose the ability to do so. Susan Norwell is a specialist in communicating with non-verbal children.” He says the eye-gaze technology has opened new horizons for the girls and their families.

Auckland Paediatrician Dr Rosie Marks, who works at Starship Hospital’s Developmental Paediatrics Service, also made time for individual appointments during the conference.

Dugald says about 40 families attend the conferences. Some bring their daughters, but not all the girls can travel. “It’s a huge networking opportunity for parents. It also allows people from Southland, Northland, all over the country, to meet people with the same problems and who think the same way.”

Dugald says it’s costly for parents to travel to Auckland, but the Rett New Zealand conference itself is free, thanks to support from the IHC Foundation, the Deane Endowment Trust and other sponsors.

Study to explore benefits of music therapy for ASD

Dr Daphne Rickson from Victoria University’s New Zealand School of Music

A Victoria University of Wellington academic has been awarded nearly $100,000 in funding to research the effectiveness of music therapy for children with Autism Spectrum Disorder (ASD).

The New Zealand IHC Foundation funded-project, led by Dr Daphne Rickson from Victoria’s New Zealand School of Music, explores the potential of music therapy for 10 New Zealand children with ASD.

Dr Rickson says there is a need in New Zealand and internationally for studies that provide hard evidence about the impact music therapy can have on the development of a child’s interpersonal communication skills. These skills include attention, imitation, initiation, turn-taking and/or emotional expression.

“We know that music therapy is beneficial for children with ASD, but the nature of the therapy makes it difficult to provide evidence of this. By working alongside music therapists, we will develop a strong set of data that includes written reports and video, which can be further analysed to determine how effective music therapy can be,” says Dr Rickson.

“The most important part of this research is that we want more children with autism to receive music therapy. This research project will provide more evidence to argue the case for its place in the treatment of children with ASD.”

Read more about the project on Victoria University’s website here.

The IHC Foundation has also funded the NZSM’s ACTIVE MUSIC research project which you can read about here.

Gene researchers seek causes of rare disorders

Families may be closer to discovering the genetic causes of intellectual disabilities affecting their children thanks to a University of Auckland research project being funded by the IHC Foundation.

A research team, led by Professor Russell Snell, Dr Jessie Jacobsen and Associate Professor Klaus Lehnert, of the School of Biological Sciences, is using the latest genome sequencing technology to look for a genetic diagnosis for children with undiagnosed, rare neurodevelopment disorders.

Twenty families from throughout New Zealand are participating in the two-year pilot study to discover the genes responsible for disorders that can’t be explained through standard tests. The IHC Foundation is meeting the $147,000 cost of collecting and reading the DNA.

“Sequencing is reading the DNA that is in all of our cells,” Russell says. “The great advantage of the new method is that you are reading all the pieces of DNA in one step. The magic is taking all of these small pieces and comparing them to a standard.”

A genome is the complete set of genetic instructions or genes contained in each cell. In humans, each genome contains all of the information needed to allow us to grow and develop.

“We get the DNA from either blood samples or saliva samples. We collect DNA from the parents, where available, along with the affected individuals,” he says.

The participants with intellectual disabilities are mainly children.

Only the individuals will have Whole Genome Screening, which looks at the complete set of DNA at a single time. “In the parents we sequence all the exome – the protein-coding regions. It’s approximately half the cost of sequencing the genome,” Russell says.

The exome in humans is about 1 percent of the total genome, but is thought to harbour about 85 percent of DNA variations that cause disease.

“The rationale behind that is that we expect to see variations in affected individuals. Some of the variations might be in the protein coding, but some of them might exist elsewhere.

“If we had more money we would sequence the whole genome in all individuals, but this group of cases will tell us how successful this more limited approach is,” he says. “For the current work the funding has come from the IHC Foundation, which is extremely generous. We are always looking for more funding as we have vastly more requests than we can support.”

The direct cost of sequencing is now as low as an overnight stay in hospital, but it’s not yet part of a routine approach to treatment. Russell says the aim is to build a case for making genome screening part of routine clinical practice for undiagnosed conditions and conditions likely to be inherited.

“Traditional gene-screening approaches, where you only select one gene at a time for analysis, are appropriate only for well-known conditions.

“The majority of conditions are rare and cannot be identified through this slow and expensive process. This leaves the patients and their families without a way to assess the risk of future pregnancies and can lead them on lengthy and costly diagnostic odysseys,”he says.

“Fundamentally, understanding the genetic basis of a condition is a very important first step towards the identification or development of a treatment.”

He says that a diagnosis can often help focus treatments.

Being able to put a name to a condition and to be able to describe causation can give families comfort and remove the worry that some environmental factor has caused a condition.

“Some families are interested in having more children, and finding a cause can mean they can make choices about having more children.

“We are working hand in hand with clinical geneticists across the country and we are building the evidence for the routine application of these technologies. Our hope is that as soon as a child presents with a developmental condition, the first port of call is that they will have their DNA sequenced if they choose.

“All the variations that we discover in our research lab are re-checked by the formal diagnostics laboratory and the results, if the patient or parents would like them back, are delivered through the formal genetics service,” Russell says.

The team believes that the new, cost-efficient genome-wide sequencing can dramatically increase the rate of genetic diagnoses in rare conditions.

In the course of this research project, the team is expecting to find the gene mutations responsible for neuro-developmental disorders in more than 10 of the 20 participating families. Russell says they can make that prediction based on past experience.

“There are some conditions where intervening early with a therapy can prevent longer-term damage.” Already the team has been able to identify two cases where early intervention has proved to be beneficial. “If the conditions were recognised from birth, the benefit of treatment could have been even greater,” he says.

“As a group we are quite good at identifying causal DNA variants now, and at least as efficient as the best groups in the world. This is because we are a research group. We spend more time on each case than a diagnostic laboratory can currently. However, with the experience being gained through our work and internationally, the process is becoming increasingly efficient.”

Williams Syndrome Association camp is a lifeline

IHC Web Specialist Mao Vaireka had a special reason to attend a two-day camp over Easter for people who have Williams Syndrome.

Mao’s daughter Tatiana, now aged 12, was diagnosed with this rare, non-hereditary genetic condition when she was a year old. The syndrome affects only one in 10,000 births. This compares with Down Syndrome which, according to United States statistics, affects one in 690 births.

Mao and his partner Kylie, with Tatiana and her young sister Lania aged five have been attending the camps, held every two years at different parts of the country, since Tatiana was three years old.

The camps are sponsored by the New Zealand Williams Syndrome Association and some funding for this year’s event was donated by the IHC Foundation.

This year Mao and his family travelled to Brightwater, near Nelson, to join 30 other families for what Mao describes as a lifeline of support.

“We get to share our experiences about Tatiana’s schooling and life stages with families who have younger children. We also learn a lot from the families who have teenagers with the syndrome, which is a great help for Tatiana,” says Mao.

“It’s also helpful to share our experience with families of younger children who are newly diagnosed, so they can see that they are not alone,” says Mao.

Mao says that children with Williams Syndrome can have developmental delays in walking and talking and a calcium allergy that affects their nutrition intake. In more severe cases there can be heart problems.

At the camp there was plenty of expert advice to hand. Noted Williams Syndrome expert Dr Antonio Chasouris, author of Williams Syndrome, A Handbook for Parents and Professionals, who is based in Invercargill, presented his latest research.

“It was really great for us all that he made himself so accessible to families over the two days,” says Mao.

An occupational therapist helped parents identify characteristics around developmental delays and explained therapies to improve coordination. There was a transition session for teenagers moving into adult life, a music workshop and shared meals.

Siblings weren’t forgotten, with a confidence-building course for them, and volleyball and outdoor activities for all.

“If it wasn’t for the camp, we wouldn’t know there were other families in New Zealand to share our experiences with. It would be overwhelming.

“Getting together like this helps Tatiana and our family understand her condition and learn how to cope. There’s endless information about Williams Syndrome on the web, but there’s nothing like spending time with families in the same boat as ourselves,” says Mao.

For further information: www.williams-syndrome.org.nz