Parent to Parent Spring Magazine 2015 by Parent to Parent NZ

Parent

to Parent MAGAZINE •• SPRING 2015

Sensory friendly movie A totally different world

JB Munro signs off

Connecting parents Parent to Parent is a nationwide not-for-profit organisation formed in 1983 by parents and professionals to support the families of children with disabilities and health impairments. Thirty two years later, its 11 branches nationwide help families get through tough times, and encourage and empower them to think big, have hope and create meaningful everyday lives for the whole family. Free and confidential, its two main services are the Support Parents connection and providing information. Support parents: Having contact with another parent who has ‘been there’ can make all the difference. Parent to Parent supports families/ whanau by connecting parents with a trained Support Parent who has a child with the same or similar condition, or who has experienced similar issues. More than 600 trained Support Parents nationwide can offer practical ideas, solutions and lend a listening ear. This service is unique to Parent to Parent; by supporting parents through their challenges, they are better equipped to focus on the gifts, skills and strengths of their child, and not let the disability block the pathway to a bright future. Information: Parent to Parent’s researchers offer free information on over 3600 conditions; easy to understand information tailor-made for each child – for the child’s whole family, early childcare learning centres, schools, workplaces and any organisation that works with, and for, people with disabilities and health impairments. Conditions range from the common to the rare, and could be a result of a birth injury, car accident, medical misadventure, autoimmune disease or longterm medical conditions; from behavioural to physical, sensory, mental or intellectual.

@ www

national@parent2parent. org.nz

read online parenttoparent.org.nz

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free phone 0508 236 236

Anne Wilkinson Chief Executive

Welcome to spring and this edition of our magazine. There has been a lot of discussion over past months about support for children in the education system. This raised issues that hinder true inclusion, attitude and funding. The Ministry of Education through its Special Education Update is looking at what needs to be done to improve the experience and outcomes for students with additional educational needs at school. The consultation for this was extended to include families with a series of meetings throughout the country – good to see parents and families acknowledged and participating as partners in the important processes of change and improvement in the sector. Enabling Good Lives is a partnership between the disability sector and government agencies. The Ministries of Health, Education and Social Development are contributing and working in partnership with disabled people, their families and whanau. The primary focus is to enable disabled people and their families to have greater choice and control over the supports they receive and the lives they lead. The Waikato demonstration of Enabling Good Lives was officially under way in July and welcomed its first group of participants wanting to participate. Peoples’ first connection with Enabling Good Lives Waikato is through a Tuhono or Connector; they have the opportunity to consider what a good life looks like for them and the supports they may need to achieve this. The Christchurch demonstration, in its final year, worked mostly with school leavers and has transformed the pathways for many young people. Learnings from the two demonstrations will inform the much bigger project of system transformation. For more information on Enabling Good Lives check out the website http://www.odi.govt.nz/ what-we-do/improving-disability-supports/enabling-good-lives/

Bright futures w h ere

an yt h i n g i s p o s s i bl e

Business development manager Sue Pairaudeau is the latest addition to the Parent to Parent team at the national office in Hamilton. Sue comes from 23 years in print media, the past nine as a newspaper editor, followed by three years in retail marketing and communications.

She is now leading Parent to Parent business development through funding, communications and marketing. Her first major project is travelling the country directing and facilitating the current focus group and survey exercise, which may result in a consolidation, refresh or rebrand for Parent to Parent. Her goal is to raise the profile of the organisation so it can deliver its high quality core services to more people to keep up with increasing demand. Sue comes from a large family where disabilities in young adults ranging from Type 1 diabetes to ADHD and aspergers are not considered barriers to leading full lives filled with fun. Having spent three years researching natural health and how nutrition affects the brain and body, Sue says peoples’ health and wellbeing drives almost everything in her life, and her attitude is “anything is possible”.

PARENT TO PARENT MAGAZINE • SPRING 2015

Looking within Throughout September Parent to Parent is conducting focus groups nationwide to find out who knows what about our organisation and to help shape our future. We aim to eventually become New Zealand’s “go-to” organisation for supporting families of children with disabilities and impairments, so we’re looking at our brand – our logo, name, strapline and what they mean to people who may or may not know what we do. Focus group participants have been invited from all corners in the communities surrounding our 11 regional offices. They represent a random selection of locals as well as our volunteer support parents, parents being supported, and board members, to share food and ideas, and win fun spot prizes.

4 5

C ontents special film screening

A totally different world

6 awareness week a timely reminder 7

parent to parent in northland

inclusive atmosphere

introducing catherine trezona

understanding ear

a special ability: JB Munro

events diary

The focus groups will then determine what we ask in a nationwide survey. Together they will determine what happens next – a consolidation, refresh or rebrand – so community input is vital and very much appreciated.

If it results in a new look, a relaunch is planned for next February, and we hope to see all the same faces back to celebrate.

The focus groups are fun and interactive, and the success of the discussion can largely be attributed to Natalie Richards, managing director of Versus Research, Hamilton.

Manager Sue Pairaudeau Editor Glenn Lambert-Vickers Graphic designer Te Reo Hughes Parent to Parent wishes to thank the newspapers that covered our people and children during Awareness Week, and consented for us to run those articles in this magazine. Cover: Photo courtesy of Hamilton News

PARENT TO PARENT MAGAZINE • SPRING 2015

This year’s Parent to Parent Awareness Week (August 10-16) received unprecedented media coverage with 13 newspapers and two radio stations from Whangarei to Invercargill reporting on the event and talking to our people. Here are a few of those wonderful stories. By Ged Cann To mark Parent to Parent’s awareness week, which begins on Monday, the organisation has organised a sensory friendly screening of the Minions movie. Parent to Parent is a nationwide charity formed in 1983 to support families of children with disabilities and health impairments by providing information packs and connecting parents who are going through similar circumstances.

Special

film screening

Jacquie Dale is a user of Parent to Parent and said for her four-year-old son Toby the chance to see Minions at the cinema was amazing. “We took him to the cinema and showed him the screen so he can work up to it. He’s never been to the cinema before and he loves the Minions.” Toby has Russell-Silver syndrome, a rare growth disorder, which means he has always been smaller than his twin brother Finn. Toby is on a growth hormone to help him catch up to his brother. Jacquie had previously taken Toby to a clown show and just the lights dipping was enough to unnerve him. “We had to take him out. Even now whenever we drive by the theatre he remembers.”

Parent to Parent will host the sensory friendly screening of the movie so children who would usually be affected or unable to go to the cinema can have the opportunity. Parent to Parent Waikato regional coordinator Carol Maynard said the inspiration for the event came from her daughter, who returned from a Sibling Support camp with the knowledge that half of the families there had had to leave a cinema in the past when a disabled child became frightened or disruptive.

experience, in an understanding environment. “This concept is very popular in the United States and the United Kingdom.”

Twins Toby, left, and Finn prepare for Toby’s first ever trip to the cinema.

Jacquie said Parent to Parent had been an immense support in the early days of her sons’ lives by providing The viewing will have dimmed rather than reading material and helping her realise she was extinguished lighting, and the sound levels will not alone when she spent most of her time at the be limited to avoid any unnecessary frights for the hospital. children. Families will be able to bring their own “We also have coffee groups, those are really food as well. awesome for the mums,” she said. “We have organised this so young people with needs that are unable to attend a screening with Courtesy of Hamilton News 7 Aug 2015 the general public are able to have a movie 4

PARENT TO PARENT MAGAZINE • SPRING 2015

A totally different world By Geoff Lewis

Parent to Parent also helped in moving children out of the home, when the time came, into more independent living arrangements, she said.

Coping with one child with disabilities is hard enough, but dealing with two takes a special person and special help – or so Hamilton mum Samantha Te Papa has found. Originally from Britain, Te Papa came to New Zealand 11 years ago, moving to I knew Hamilton in 2009 to begin where she joined Parent to Parent – an organisation which supports families of children with disabilities and impairments.

“

nothing about autism

A nationwide not-forprofit organisation formed in 1983, Parent to Parent New Zealand celebrates its 2015 awareness week, August 10-16.

Free and confidential, with. It is a totally last year Parent to Parent connected . 478 parents with a volunteer support parent; provided 2860 tailor-made information packs, sibling support programmes for 92 children and teens, and Her first son, Hayden, now 8, has spastic training courses for 130 parents. quadriplegia, cerebral palsy and severe epilepsy. Other than that, he is a very bright boy. Parent to Parent Waikato regional co-ordinator Carol Maynard said the main event for Parent to Three years ago second son Harrison arrived and Parent’s awareness week in Hamilton was the while things seemed normal at the outset, he was sensory-friendly screening of the movie Minions. eventually diagnosed with autism and a severe Sensory-friendly screening means the lights are processing disorder. Otherwise also a very bright left on low and the sound volume is reduced. boy. ‘‘We want to provide an opportunity for families to ‘‘Being able to turn to Parent to Parent has been attend the movies as a whole without fear of being really good,’’ Te Papa said. asked to leave because their child might make ‘‘I knew nothing about autism to begin with. It some noises or get excited. People with special is a totally different world. Parent to Parent has dietary requirements can take their own food and provided me with lots of information and shown there is also allowance made for increased levels me where to go to meet parents of other kids with of movement and noise,’’ Maynard said. similar disabilities. Courtesy of Hamilton Press 5 Aug 2015

different world

‘‘Parent to Parent has allowed me to understand what is out there to help and to talk to therapists to better understand the professional practice – although therapists don’t have to live at home with the problems.’’

”

Hamilton mum Samantha Te Papa, with sons Hayden, 8, and Harrison, 3, says Parent to Parent was a lifesaver. Photo supplied by Bruce Miller

PARENT TO PARENT MAGAZINE • SPRING 2015

Aw ar en es s A timely reminder By Amy Johnson This week is Parent to Parent Awareness Week, and Southland regional coordinator MaryAnn Hughes is hoping to raise awareness about the services the organisation offers to families. Formed in 1983, Parent to Parent was established as a not-forprofit group by parents and professionals to support families of children with disabilities and health impairments.

W ee k daughter Bailey Peters was diagnosed with ADHD (Attention deficit hyperactivity disorder) about three years ago, followed by mild dyslexia a year later. Leanne said she was shocked when she found out about Bailey’s condition and found it difficult to find more information.

“It’s not a nine to five, it’s full on.’’ However, after talking to MaryAnn she was given a ‘‘huge information pack’’ which covered not only the conditions, MaryAnn said Parent to Parent but also strategies about how to offered a free matching and manage behaviour associated information service to families with it. throughout Southland. “There was so much good With its national office in Hamilton, reading,” Leanne said. MaryAnn said researchers would find out more information about Leanne said it was particularly a child’s condition from doctors, helpful to talk to MaryAnn, professors and paediatricians. because she has a child with Asperger’s Syndrome. “When a parent’s child is diagnosed with a condition, “I know from a mother’s often they don’t know anything perspective what it’s like,” about it.” MaryAnn said. Parent to Parent had information about more than 3600 conditions, she said. “It’s specifically tailored to that child.’’ Invercargill mother Leanne Pope has been using the service for the past couple of years. Her 6

who had been through similar experiences, there were also 42 trained support parents based in Southland. “We’ve got a wide variety of parents who have experienced and been through the journey with their child in many conditions.” If a family could not be found locally, Parent to Parent would look nationwide, or even internationally if it was a rare condition. Working alongside the coordinator from Autism Southland, MaryAnn said they made rural visits and held support groups in Queenstown, Gore and Te Anau. Parent to Parent also held family activities, such as a Sibling Support Camp, which is coming up in November, for children aged 8-18 who have a sibling with a disability or health impairment.

MaryAnn said she was thankful for the support of funders and Bailey was now reading at a 10-11 Parent to Parent’s volunteer year old age level, and was no committee who helped make longer getting sent out of class, the service possible. “Without Leanne said. “I just wish we got my committee I wouldn’t be able to do half the things I do. They’re the diagnosis [earlier].” very supportive,” she said. For people wanting to connect with other families Courtesy of Southland Express 13 Aug 2015

PARENT TO PARENT MAGAZINE • SPRING 2015

Parent to Parent

pro vid ing we alt h of sup por t

By Danica Maclean

in Nor thl and

Support is the name of the game for Emma Watson. Her 14-year-old son Tyler, who attends Blomfield Special School, was diagnosed with autism when he was two years old. She receives support from Parent to Parent and Altogether Autism Northland, and also provides support back to other mums involved. Watson first became involved when her family moved to Northland from the Wairarapa in 2013. Parent to Parent supports families of children with disabilities and impairments while Altogether Autism focuses specifically on autism support. This week is its annual awareness week. The goal is to connect parents with other parents who have children with the same or similar conditions as their own. Watson attends monthly coffee group catch ups where she has met some other mums dealing with similar issues. “Tyler has complex needs and requires a lot of support – having someone to talk to is huge,” she says. “It is critical to have support along the way when you have a child with autism.” Parent to Parent and Altogether Autism also provide people with easy to understand information on over 3600 conditions. Watson says whenever she needs information to support Tyler she puts an information request through and the research team sends out an

information pack that is specific for Tyler and the issue she is seeking information about. It also provides courses which help parents ensure their child gets everything they are entitled to at school. The free service has connected with 393 people in Northland since it launched in 1983. Watson also volunteers for the Sibling Support days. She says children who have a sibling with a disability miss out, as often parents are dealing with the child with the disability and are stretched for time. “It’s so cool to see the kids have fun on a day especially created for them.” “There have been good times and hard times, but when I look back, I see how strong this journey has made me as a mum. Tyler is an awesome son and I am continually learning methods and ways to allow him to grow and develop his skills for the future,” she says. Courtesy of Stuff 10 Aug 2015

Tyler (left) and mum Emma Watson are one of many Northland families who benefit from Parent to Parent’s support. (opposite page) Parent to Parent service users Leanne Pope (back left) and Bailey Peters (9), with Southland regional coordinator MaryAnn Hughes.

PARENT TO PARENT MAGAZINE • SPRING 2015

Inclusive atmosphere Bernie Wastney, keynote speaker at the Altogether Autism Conference

attendees with a kaupapa Māori alternative for supporting Māori learners with autism, while Betty Pulefolau-Kolose discussed bringing autism awareness to the Pasifika community. Attendees at the Applied Theatre Specialist workshop were treated to a live demonstration by The Altogether Autism AUT’BE conference 2015 Mind Over Manner (MoM) of sensory processing in Auckland on July 22 and 23 attracted 240 differences and neural anxiety through a delegates, including people on the spectrum, hypothetical family scenario. Facilitator Susan their families, and professionals. MP Hon Ruth Haldane guided the audience through each Dyson and media representatives also attended hypothetical family member’s reaction and the individual sensory processing that led to the sessions. exchange. The conference featured keynote speeches and workshops with a balance of lived experience Other notable workshops included a presentation by Nan Jensen of Quin Law about legal rights and and professional expertise. responsibilities, while Tanya Breen and Jenny Presentations from a Māori and Pasifika Gibbs presented on using psychological tests perspective, along with a sensory theatre for diagnosticians and test users in diagnosing workshop were key highlights. autism. By Glenn Lambert-Vickers

Altogether Autism national manager Catherine Trezona says the conference reflected the diversity of the Altogether Autism community. “It was wonderful to provide a balance of lived, family, and professional experience across the conference, reflecting our goal of inclusion and diversity.” A highlight was the Māori and Pasifika perspectives. Keynote speaker Bernie Wastney delivered a Māori whānau’s experience of autism, with advice for professionals on building partnerships with families. Dorothy Taare-Smith provided 8

The Parent to Parent trade stand proved a popular stop for delegates, providing resource packs and parent support services information. Feedback from delegates was overwhelmingly positive, with many commenting on the inclusive atmosphere along with the balance of personal, parental and professional perspectives on offer. Altogether Autism is a national information and advisory service for people on the autism spectrum, their families, whānau and professionals. It is provided in joint partnership by Parent to Parent and LIFE Unlimited.

PARENT TO PARENT MAGAZINE • SPRING 2015

Introducing...

Catherine Trezona

Catherine Trezona was formally introduced as the new national manager of Altogether Autism at last month’s AUT’BE conference. Glenn Lambert-Vickers talks to Catherine to find out more about her new role and her background. Catherine, can you tell us about yourself?

I grew up in the Waikato and I am the mother of two Cantabrian-born sons. I’ve previously been a mohair wool classer, a goat farmer, and a Playcentre supervisor. I recently completed a Masters at Massey University in Health Psychology. My Masters involved a qualitative research project working with parents and children involved in a child weight management programme. I have worked for Altogether Autism since 2014 as a researcher.

What do you do outside of work? Faith, family, farming! I’m a country girl at heart. I live on my uncle’s farm so am still involved with stock work with assistance from my beautiful dog Bethany Beagle. I love visiting my sons who are both based in Wellington. I enjoy experimenting with new gourmet vegan creations and sharing them with the community through a monthly recipe club.

What do you see as the key priorities for you going forward as national manager? I’d like to focus on enhancing our community and networks to ensure people on the spectrum, families, and professionals have a voice in all aspects relating to autism. I am also passionate about building relationships with Māori and Pasifika communities, using the connections formed through the AUT’BE conference. Migrant communities are another group I would like to see us connecting with further. What other community needs do you see as a focus for Altogether Autism? I feel it is important we offer support for people on the spectrum who are experiencing a transition, for example transitioning out of the school system. Transitions can be a stressful time for people with autism and it would be wonderful to be able to provide support for the person, their family, and professionals working with them. PARENT TO PARENT MAGAZINE • SPRING 2015

Connection

& an understanding ear

Carolyn Jury leads a busy life as a mother, a student, and as Parent to Parent’s support and information coordinator. Glenn Lambert-Vickers talks to Carolyn about her involvement with the support parent programme, her studies, and her passion for helping families of people with disabilities.

As the support parent and information coordinator for Parent to Parent since April, Carolyn connects people who want to speak with a trained Support Parent – someone who has been through similar experiences and can offer an understanding ear. Connecting with another parent who has “been there” reduces the sense of being overwhelmed by the situation.

years Carolyn has been studying towards a Bachelor of Applied Social Sciences in counselling at Wintec, Hamilton, and is completing her final paper this semester. She was motivated to study counselling from her experiences of parenting a different child and her volunteer work with Parent to Parent. The enjoyment Carolyn felt from supporting other parents with calls inspired her to learn more about counselling and develop her skills to help others in the community.

After graduating Carolyn sees herself still working within the disability sector using her passion for supporting families to encourage and empower people to reach their full potential. After balancing a busy range of commitments, Carolyn will hopefully have time to celebrate mum to a son who and reflect on her journey while enjoying a well-earned is different helps rest from study!

“Being

Carolyn says: “They understand the small steps and resultant celebrations in a way that the wider world may not comprehend.”

Carolyn knows the benefits of me to understand and a connection from personal experience, having been connected with a Support Parent and later becoming one herself. As whānau and families. the mother of a son with Asperger’s Syndrome, Carolyn contacted Parent to Parent in 2007 for information and support. The connection was so beneficial that Carolyn trained to be a Support Parent soon after and joined the local Waikato Parent to Parent branch.

empathise with our

”

“Being mum to a son who is different helps me to understand and empathise with our whānau and families,” Carolyn says, “and I find it rewarding being part of a team that makes a real difference in the community.” For the past three 10

PARENT TO PARENT MAGAZINE • SPRING 2015

JB Munro received a 2013 Attitude Hall of Fame award for outstanding lifelong service to the disability community.

A special ability JB Munro is stepping down. The former head of IHC, fundraising maestro and global disability advocate talks to Bruce Munro about the poliovictim foster child who left school without any qualifications and went on to play a pivotal role in the most significant advance in disability rights in the history of New Zealand.

time for the disability sector and the country: The end of institutionalisation for thousands of people who were now being integrated into mainstream New Zealand life, often for the first time; the rise of disability rights, which was challenging social stigma and expectations around disability; the culmination of two decades of slow but steady progress, now spilling over into people's everyday A photographer at the Otago Daily Times tells a lives. And in the eye of the storm stood JB, story about JB Munro that is hard to reconcile with enthusing, cajoling, envisioning, and sweating the quiet, elderly gentleman sitting here in the towards his vision for a better tomorrow for armchair of his modest Mosgiel townhouse. everyone. ''I was a cadet photographer and I asked him what ''It was a very hard battle. But I wouldn't change the JB stood for,'' the photographer recalls. it for anything,'' says the 78-year-old in the blue ''He replied, ‘It’s JB. Go ask your chief of staff','' the overawed youngster was firmly told.

cardigan with a glint in his eye. ''No one should be institutionalised. It must never be lost.''

''JB – he's a legend,'' the now senior photographer concludes. The incident occurred in the mid1980s.

Mr Munro was born on August 15, 1936, the son of an unwed 16-year-old girl from Gore. He became a ward of the State and was fostered at a few months old by William and Lily Munro, who farmed on the outskirts of Invercargill.

Mr Munro was in the middle of a 20-year reign as national director of IHC, the organisation providing services for people with intellectual The Munros had begun fostering when their own disabilities and their families. It was a tumultuous children, including Burt Munro, of World's Fastest PARENT TO PARENT MAGAZINE • SPRING 2015

Continued from page 11 Indian fame, had grown up and left home. ''Burt was 36 years older than me. He lived at the far end of the farm on Tramway Rd and liked to speed along the gravel road on his motorbikes,'' Mr Munro says.

floor foyer of the old YMCA building, in Moray Pl. One day, he noticed a young man with an intellectual disability standing outside watching those on the trampoline. Mr Munro invited him in to have a go. The next day the boy returned with several friends. ''It was that young man who triggered John's More than 100 children were given short or long- interest in disability,'' Mrs Munro says. term care in the Munro home. By 1968, JB was the administrator of Southland IHC. At only a few weeks old, JB Munro contracted For several years, he combined that with being an polio. As a result, his left foot was twisted outwards Invercargill city councillor ... invited to stand as the at a 90-degree angle and his heel hung in the air. Labour candidate for Invercargill. It was a timely In 1944, he came under the care of orthopaedic offer as he was becoming increasingly concerned surgeon Major Renfrew White. The next eight about the needs of people with disabilities. months were spent in Dunedin, between the ''It was the reality that things could be much hospital and Kew Convalescent Home, enduring improved,'' Mr Munro says with feeling. four operations that included the grafting in of a ''We had 10,000 people with an intellectual bullock bone to lengthen his leg. disability in state institutions. Forty to a bedroom. (Some four decades later, Mr Munro would buy A health department that was absolutely ... A lot the South Dunedin Convalescent Home he had of individuals who were self-centred so-and-sos.'' spent so much time in and convert it to the service of people with intellectual disabilities.) In Parliament, he championed the groundbreaking Disabled Persons' Community Welfare Teased for his callipered limp, and then unable to Act. The Bill, which was passed during the last get School Certificate despite repeated attempts, week of Parliament before Labour was defeated Mr Munro left school at the age of 18 and took in the 1975 general election, gave disabled people work at the Vacuum Oil Co (later Mobil). It was just community services as of right for the first time. to pay the bills. His real focus was youth work. It was during a chance meeting at Wellington He led the large local airport that chapter of Boys Brigade former IHC head and was superintendent of Donald Beasley It was a very hard . a Sunday school that had 35 suggested Mr volunteer teachers working Munro apply for But I with 400 children. After two the top IHC job. In years’ youth work training in October 1977, the it for . Sydney, the energetic natural family packed up leader returned to New for a new life in Zealand, married his fiancée Wellington. They Val (nee Sharfe), and shifted would not return south for 21 years. to Dunedin to work for the YMCA. ''It changed our lives completely. The things John Adopting the radical approach of asking teenagers was able to accomplish with a willing staff, '' Mrs what they wanted, JB (as he was now known) Munro says. organised and ran weekly and fortnightly dances Human rights had been slowly on the rise since which attracted up to 500 young people. The the 1960s. Women's rights, indigenous rights, gay money he raised went towards the construction of rights ... Now was the hour for disability rights. the joint YMCA facility and Dunedin City Council Up until then, the focus had been on keeping carpark later built on the Moray Pl site at the disabled people locked up and out of sight, Dr bottom of View St. Hilary Stace, a disability researcher at Victoria, During this time, the couple's two children were University of Wellington, says. born. ''He was really important in the deinstitutionalisation Mr Munro had set up a trampoline in the ground of people with disability and then in the shift from

“

battle wouldn’t change anything

”

large community housing to smaller community applied to fight for others. housing in residential neighbourhoods,'' Dr Stace, ''He is very caring. And he fights for anything, who is researching a book on JB, says. always with words, using his intelligence,'' Mrs Fundraising continued to be an active sideline. Munro says. The calf-rearing scheme he set up, and which still They could just be the sentiments of an admiring operates, was netting the IHC about $500,000 a spouse. But they are repeated in different forms year. He gave seed funding to Parent to Parent, by many others. which supports families of people with disabilities. Alan Somerville, past president of Otago Some of the money donated during the 1981 Playcentre and Abbeyfield Dunedin chairman, nationwide Telethon, which he co-chaired, got shoulder-tapped for the role by Mr Munro, says JB mobility taxis started in New Zealand and brought has an ''anything is possible'' attitude. teletext to the country's television sets. He The downside of that is that it is ''exhausting for founded what became the the rest of us'', Mr Fundraisers Institute of New Somerville jokes. Zealand, and hosted the first JB has an disability television show in The aim was the country. always to secure attitude ... the change and In 1998, the same year he assistance that was was made a Companion of needed to help the Queen's Service Order, others, the couple Mr Munro voluntarily stepped down as chief say. The chief example was ''bringing children out executive of IHC and took up the role of Otago of institutions'', Mrs Munro says. administrator, ''to get back to the grass roots''. But two years later, he was on the move again, ''Some parents were frightened that going into the seconded to disability self-advocacy group big wide world, they [their children] were going to Inclusion International as chairman and roving suffer for it. But it didn't happen. ''They would go off to dances, live by themselves, ambassador. get a job. All these things happened. And they In recent years, he has been president of Rotary had been told by the doctors years ago that their Mosgiel and served on Rotary's international children would never amount to anything and they service committee. The New Zealand wing of needed to be put into an institution. Rotary International's disaster relief ShelterBox project has raised millions of dollars since JB was Mr Munro's only regret is that he was not able to its first New Zealand secretary. He has also raised raise more money to put IHC on a more secure funds, and served as international chairman footing. for seniors’ community housing organisation ''But the thing is, dear, you were focused on doing all the humane things,'' his wife replies. ''Ralph is Abbeyfield. Now he is stepping down, stepping back. A move building on that now. You got it all started.'' given impetus by the onset of Alzheimers. Beyond that, Mr Munro says there is not a thing he Mrs Munro says she noticed the beginnings of his would change about his life, not even being a ward memory loss up to five years ago. A brain seizure of the State. At the age of 50, he was reunited with last year, however, has sped up the degenerative his birth mother, his siblings and relations. ''Now I have two wonderful families,'' he says. process.

“

‘anything is possible’

“There's no point taking responsibility if you can't remember something right at the crucial time or you make the wrong decision,'' a philosophical Mr Munro says. But there is still much of the mental spark and verbal skill that made him a fearless advocate and fearsome opponent. Mr Munro admits he was always quick with his tongue. It was a skill he acquired to counter schoolyard bullies and then

”

Mrs Munro glances over at him, another reason to be grateful, not bitter, forming in her mind. ''If John hadn't had all those experiences, he might not be the man he is today. He might not have done the things he did.'' Courtesy of Otago Daily Times 6 Jul 2015

PARENT TO PARENT MAGAZINE • SPRING 2015

introductory autism workshop in early intervention best practice EARLY START DENVER MODEL INTRODUCTORY WORKSHOP Autism is estimated to affect 1:100 children. While it is a spectrum disorder, it is lifelong and often presents with significant impairment. Many children are diagnosed in their early years (before age five) and, given the brain plasticity in the first years of life, early intervention offers the best potential.

Elizabeth Fulton • developing and supervising Group ESDM intervention programmes • ESDM Clinics • ESDM Parent Training.

Elizabeth is also an experienced presenter, training large groups of professionals in a range of child development, behaviour analysis and The value of early intervention is widely recognised intervention topics. with studies showing better outcomes with earlier treatment. However, knowledge, availability and What will you learn? accessibility of evidenced-based programmes is In this introductory one-day workshop to learn about the theoretical and empirical framework, limited. curriculum and teaching principles of the ESDM. Victoria University, in conjunction with the Autism Intervention Trust of Wellington, is pleased to Topics include how to: announce a one-day workshop in the Early Start • Become a play partner with a child with ASD and engage them in rich one-on-one learning Denver Model (ESDM). ESDM is an evidencedexperiences based programme that shows huge promise in the treatment of autism in pre-schoolers. • Promote children’s development, communication, social interaction and imitation What is ESDM? Named as one of Time Magazine’s Top 10 medical • Administer and complete a developmental breakthroughs of 2012, ESDM is an evidenceassessment of children's skill levels based intervention specifically developed for very young children with autism. ESDM is a play- • Develop individualised and developmentally appropriate teaching objectives based intervention that fuses behavioural and developmental principles into an integrated • Implement the ESDM teaching practices and fidelity system to evaluate technique use approach. Using play and daily routines, ESDM can be implemented in different natural settings such as the home or an early childhood centre by trained therapists and educators as well as parents and other family. ESDM aims to reduce the symptoms of autism and targets all developmental areas.

• Maintain data systems and address progress challenges when needed.

WHEN: Monday 19 October • 9:30am-4:30pm WHERE: Victoria University Karori campus Donald St, Theatre Block, Lecture Theatre $105* Family/whanau ESDM offers the potential to transform beginnings COST: $155** Professionals for children with autism. Morning/afternoon tea and lunch provided. The presenter Elizabeth Fulton has been working with children with autism and their families for many *plus $5.12 booking costs years. She is also on staff at the University of NSW **plus $6.38 booking costs in the Faculty of Medicine School of Psychiatry. REGISTER: Elizabeth is a certified ESDM therapist and the http://www.eventfinda.co.nz/2015/early-startfirst Certified ESDM trainer in Australia. Her clinical denver-model-introductory-workshop/wellington experience includes: • assessing children with ASD 14

PARENT TO PARENT MAGAZINE • SPRING 2015

events diary See what is happening in your region All Parent to Parent events are free

RENEW A short workshop set in a tranquil venue that explores natural support networks, grief, family resilience and managing stress. Meet other parents in your area. 25 Sept • Yarnton House • Auckland

SIBSHOP / SIBCAMP A day or weekend camp for kids aged 8-18 who have a brother or sister with a disability. 6 - 8 Nov • Camp Adair • Auckland 27 - 29 Nov • Camp Columba • Southland

SUPPORT PARENT TRAINING The course covers communication skills, grief issues and provides opportunities for personal awareness where parents can consider their ability to support others. 12 - 13 Sept • Havelock North Community Centre • Hawke’s Bay 25 - 26 Sept • Parent to Parent Manawatu • Palmerston North

ANNUAL GENERAL MEETING 2015 Notice is hereby given of the Annual General Meeting of Parent to Parent New Zealand Inc. 18 Oct • Auckland Airport Holiday Inn • Auckland

TO FIND OUT MORE OR TO REGISTER FOR THESE EVENTS AND OTHERS: WWW.PARENTTOPARENT.ORG.NZ • NATIONAL@PARENT2PARENT.ORG.NZ • 0508 236 236

PARENT TO PARENT MAGAZINE • SPRING 2015