Parent to Parent March 2016 Magazine

parent to parent MAGAZINE • MARCH 2016

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Connecting parents Parent to Parent is a nationwide not-forprofit 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 offer practical ideas, solutions and lend a listening ear. This service is unique to Parent to Parent; by supporting parents through their challenges, they can focus on the gifts, skills and strengths of their child, and foresee 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.

@ www

contact us

national@parent2parent.org.nz

read online parenttoparent.org.nz

facebook @parent2parentnz

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@parent2parentNZ

free phone 0508 236 236

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JB’s contribution honoured Parent to Parent New Zealand was honoured to present notable disability advocate JB Munro QSO with a lifetime membership in Dunedin on March 11. The award acknowledged JB’s contribution to Parent to Parent, and his lifetime of contribution to the lives of people with disabilities John Baldwin (JB) Munro, QSO, JP, was born on August 15, 1936 in Southland. JB – a self-described “community volunteer” known for his “anything is possible” attitude – has made a major contribution throughout his life to IHC and people living with intellectual disabilities.

He also played a pivotal role in the most significant advance in disability rights in the history of New Zealand.

His experience of polio as a child and as a state ward gave him insight into the vulnerability of childhood and what disability meant for children and families. At age nine he was adopted by William and Lily Munro, farmers from the outskirts of Invercargill who fostered children when their own, including Burt Munro of World’s Fastest Indian fame, left home. More than 100 children were cared for in the Munro home.

Educated at St George Primary (now Fernworth Primary), Tweedsmuir Junior High, and Southland Boys’ High School, he led the local Boys Brigade chapter, and was superintendent of a Sunday school that had 35 volunteer teachers working with 400 children. After two years’ youth work in Sydney, he returned to New Zealand, married his fiancée Val (nee Sharfe), and shifted to Dunedin to work for the YMCA. He ran weekly and fortnightly dances which attracted up to 500 young people.

JB was a clerk for the Vacuum Oil Company (1954 to 1957); secretary for the YMCA in Invercargill, Australia, and Dunedin (1958 to 1968); Southland administrator for IHC New Zealand (1968 to 1973); chairman for the Paraplegic Trust Appeal (1973); and set up the Fundraising Institute of New Zealand. In Parliament, he championed the groundbreaking Disabled Persons’ Community Welfare Act in 1975. The Bill gave disabled people community services as of right for the first time.

For seven years, he chaired the New Zealand Federation of Voluntary Welfare agencies, and was vice-chairman of the 1981 Telethon, which raised NZ$6 million and funded teletext in New Zealand. He was an Invercargill city councillor and Labour Party MP. During his 20-year reign as IHC national director, in 1983 he persuaded IHC to gift $5000 seed funding for Parent to Parent to establish outside Auckland.

JB was awarded the Queen’s Service Order in the 1990 New Year Honours for public service.

In more recent times, he was president of Rotary Mosgiel and served on Rotary’s international service committee. The New Zealand wing of Rotary International’s disaster relief ShelterBox project has raised millions of dollars since JB was its first secretary. He has also raised funds, and served as international chairman for seniors’ community housing organisation Abbeyfield.

In 2014 he was inducted into the Hall of Fame at the Attitude Awards.

The Hall of Fame is the awards’ highest honour, recognising and celebrating outstanding individuals who have given life-long service to the disability community.

PARENT TO PARENT MAGAZINE • MARCH 2016

Farewell It is hard to believe, but this will be the last time as chief executive that I write the introduction for the Parent to Parent magazine. Yes, after 25 years with the organisation I have decided it is time to move on.

My first position with Parent to Parent was as the Waikato group coordinator, working from home five hours a week. The role and hours grew, and for nine years I enjoyed working closely with local families and Support Parents. I moved to a newly created position at national office as national services coordinator, and at this time we rolled out our sibling camps nationally and created the SibSupportN.Z. label.

I recall my trepidation 12 years ago and the reality of the huge shoes I was about to step into when I was appointed chief executive. Founding CEO Shirley Wass had built a highly reputable nationwide organisation. Never in my wildest dreams would I have imagined the growth and development that our grassroots family organisation would experience over the next decade and more; a huge team effort, from an incredible and passionate team.

I am privileged to have worked for such an amazing organisation and to have been part of supporting so many families in such a meaningful way. My learning over the years, and the opportunity to work alongside some of the most passionate and caring people I could ever hope to meet, is humbling. Parent to Parent has become an important part of my life and my family’s, and always will be.

I thank you all for your support and friendship over the years, and wish Parent to Parent well in its most important journey ahead.

Anne Wilkinson Chief Executive Parent to Parent New Zealand

Contents 4 dads support each other

Geoff Lewis

6 stan the man

Geoff Lewis

9 care matters

comes of age

10 portia’s next step

Geoff Lewis

13 preparing to leave

school and home

14 power of positive mind

Geoff Lewis 17 social worlds

focus of study

Geoff Lewis

It’s tea party time Downunder The New Zealand Down Syndrome Association has adopted T4T (Tea 4 Trisomy 21) as a signature event for World Down Syndrome Day, March 21.

18 online marketplace

for home-based care

Tea parties in communities around New Zealand aim to raise awareness of Down syndrome and funds for the work of the NZDSA. People can host a tea party at home, work, school, in the gardens and parties can be simple or posh ... themed or casual.

People interested in hosting a T4T party can contact Sharon for an information pack which includes NZDSA bank account details for depositing funds raised; email nzdsainfo@xtra.co.nz

Editor: Sue Pairaudeau Graphic designer: David Creighton-Pester, Scorch Design Cover: Keith & Keenan Maynard, by Geoff Lewis ISSN 2463-3631 (Print) ISSN 2463-3585 (Online) All rights reserved. Disclaimer: The views and opinions expressed in this publication are those of the columnists and not necessarily those of Parent to Parent.

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Dads support and inspire each other For Keith Maynard, training as a Support Parent for Parent to Parent has taught him not only how to work with other people, but also a lot about himself.

By GEOFF LEWIS

Keith is a Hamilton fabric salesman and married to Carol, Parent to Parent’s Waikato co-ordinator.

The couple have two children, daughter Brenna, 12, and Keegan, 7, who has Down syndrome.

“When Keegan was born, the first thing I did when I got home from the hospital was jump on Google to find out what we were in for – and it all seemed like bad news. I started looking for help. I just wanted to talk to someone. I wanted to know what life was going to be like. The first organisation I found was the New Zealand Down Syndrome Association – but it had an answerphone.

“The next I found was Parent to Parent where I did get someone to talk to, and they sent us out a huge package full of information. We were put in touch with other parents who had been through the same thing, which was exactly what we needed.”

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However, coming to terms with having a child with Down syndrome was still a battle.

“The doctors and health professionals will all tell you what to expect, but at the end of it, we the parents are the experts.”

The Maynards’ first experience with other parents of children with Down syndrome showed how incredibly patient and caring many were, Keith said.

“We felt like being in an exclusive club. A club you would never wish to be part of, but now you are, you wouldn’t change a thing. You meet so many incredible people who are really inspiring.

“The main thing that struck me was how normal their lives were; the fact they had a child with Down syndrome was really no big deal. It becomes a matter of how quickly you can accept you’re going to have a child for the rest of your life.

“Ultimately we would like Keegan to be able to live independently. A lot of people with Down syndrome do that.

Photos: Geoff

“The kids with positive families around them always do better.”

As with many children and adults with Down syndrome, Keegan is spontaneous, full of laughter, loves music and is the family’s natural clown. He has been accepted by sister Brenna and the experience has helped her become more aware and supportive of other children with disabilities, the Maynards said.

Keith’s training as a Support Parent took place over a weekend. “It was intense and emotionally challenging. We talked a lot about what we had been through, all the emotions came up, there were lots of boxes of tissues.”

When matched up with another father to support, Keith found his first reaction was wanting to help the other dad and give him the tools to help himself.

“It’s a reassurance thing, to let people know they’re not alone and they’re going to get through this, so don’t freak out. The thing about training was learning to listen; how to shut up and listen to the other person.”

Since training with Parent to Parent, Keith has been matched with two fathers of children with Down syndrome.

Lewis

“There are often feelings of fear and confusion; the first thing they want is reassurance, to know that someone is listening.

“There is a big difference in the way men and women approach the issue. Men don’t tend to reach out. Support organisations like Parent to Parent mostly deal with mothers unless the dad has custody for some reason. Men tend to bottle their feelings as if they’re dealing with guilt and don’t talk about it.

There’s a perceived stigma and some have a deep sense of shame.”

However, having got to know other fathers of Down syndrome children, Keith has found the experience social and supportive.

“The fathers get together from time to time to compare their experiences without digging too deeply. We’ve all got things in common. Any time they want to talk we just get on Facebook as friends,” he said.

Geoff Lewis has been a journalist for 25 years with Hamilton Press, Waikato Times and Motortimes. He now works as a freelance writer for various Waikato organisations and publications.

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Adorable e d u d e l litt

Stanley, aka Stan the man, is the sixth child of Hamilton couple Linda Depledge-Brooker and John Brooker. John met Linda when he was a student teacher on placement at Fairfield Intermediate where Linda was teaching. Both are family-oriented people; Linda comes from a family of six and John has three siblings. Family gatherings are populous affairs.

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By GEOFF LEWIS

Thirteen years ago they started a family, and over the intervening period have welcomed Leo, Joe, Gil, Iris (the only girl), little golden-haired Arlo, and most recently Stan, into the world. They are all handsome children and special.

But the family regard Stan as extra special – he has Down syndrome (DS).

Looking back on her sixth pregnancy Linda knew there was something different, not necessarily wrong, just different. Little Stan didn’t move inside her the way the others had.

“I knew something was different. He was listless and calm and didn’t make me sick at all. With my other boys I was on the couch for four months.

Having found out we had another boy coming, I was confused by this.”

All Linda’s other babies had been large and when Stan arrived, by caesarean section, he turned out to be nowhere near as big and there was no obvious reason for this. He looked the same, but his facial features were smaller and his hands tiny.

“I was in the post-natal ward with my new bundle, but he didn’t want to feed and he wasn’t crying and none of it felt right. Stan was in the bassinet next to my bed. I looked at him and for the first time our eyes met.

“That’s when I saw it. His eyes were wide open and staring at me intently, imploring me to notice him. But what I saw was Down syndrome, 100 per cent and in flashing lights, all the tell-tale signs.”

There was a tsunami of emotions, a chaos of postpartum hormones and being separated from her new born – who was under intensive care.

Linda cried buckets.

“I wanted everything to go away or the world to stop while I worked out what to do, who to tell and how to tell people. I didn’t want people to be put on the spot if they congratulated me or say ‘Oh no’; should they come and visit, what would they say to my kids?”

John’s first reaction was one of shock.

“For me, when I was first told (that Stanley was Down syndrome) I wanted to find out what their reasoning was and have it explained to me. Once I got that intensity out of my system I went into quite a reflective mode.

“That didn’t last very long and I went very quickly to ‘he’s our boy’ – complete acceptance and love for him. I felt very clear about the role of being there as much as I could for him.”

In the end, Linda put out a Facebook message saying she and John were filled with different emotions and that they loved their little guy.

Stan is one of the lucky 50 per cent of people with DS who don’t have a heart issue. Hearing, vision and bowel issues are also common in DS children, but happily Stan hasn’t identified with anything major at this stage.

He has issues with breathing and feeding, and his bowel initially, and subsequently failed to thrive (a poor/no weight gain), chiefly due to low muscle tone. Feeding issues continue and he is gradually achieving this milestone as well as other children.

At 18 months Stan is bum-shuffling and just starting to stand. He is closely monitored with regular appointments and check-ups.

Down syndrome people have a higher chance of leukaemia and life expectancy is shorter – although a lot better than it was 50 years ago, Linda said.

One of the big things the couple have discovered, and are immensely thankful for – is to be living in New Zealand.

“The level of support from the health services is huge and free. You look overseas and the orphanages are full of Down syndrome kids. Even in places like the US, it’s all about insurance and who pays for what.

“When I was in NICU (neo-natal intensive care) for a few weeks there was support coming from everywhere; counsellors, social workers, care-givers, nurses and medical staff who put us in the right direction and in contact with the right organisations.

There is lots of help we are very well supported.”

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Tremendously helpful have been the New Zealand Down Syndrome Association, locally the McKenzie Centre which works with children with a wide variety of conditions and disabilities, children’s health trust True Colours, and Parent to Parent which they could go to every day and was an amazing support, Linda said.

John teaches at Knighton Normal School and the family have a section which backs on to the school the children go to. With a troop of boys the household is a noisy knock-around environment.

John said social media has been a big help in allowing them to communicate with parents of Down syndrome children all over the world. He also enjoys the TVNZ programme Attitude, which explores the world of disabilities through the encouraging stories of people who live with disabilities.

“I don’t think a baby with Down syndrome is what people mean when they think of ‘perfect’. But it doesn’t really matter. Stan obviously has a major difference and life will be different with him.

“There are so many people who have similar experiences.”

“But there are also plenty of similarities with the other kids, and we can already see what an amazing little guy he is, and what he adds to our family.

“He is an adorable little dude, easy to look after, rarely cries. If I lie him down he goes to sleep without a fuss and wakes up in the morning full of chatter and blowing raspberries. I think he loves his siblings probably more than they love him – and that’s a lot.”

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The sibling most affected by the arrival of Stan was Arlo, three, who found he wasn’t getting nearly as much attention. But in the end, Stan has strong support from his five siblings, and Linda feels it will make them all more accepting of others with disabilities.

The experience has made them reconsider what ‘perfect’ actually means, Linda said.

Care Matters comes of age The Care Matters website went live last November and will be officially launched by Minister for Disability Issues Nicky Wagner in Wellington in April.

The Ministry of Health initiative was contracted to SAMS (Standards and Monitoring Service) and Parent to Parent to develop a ground-breaking carer learning and wellbeing resource service, designed in New Zealand by carers specifically for carers in the disability community. The site also links to Carers NZ’s website where families can search for local matches for respite/relief care.

Care Matters’ online resources provide information such as government funding, managing relationships with professionals, stress and challenging behaviours, to connecting with another carer.

Its face-to-face workshops run by SAMS and Parent to Parent are nationwide and give carers and siblings of people with disabilities a chance to network and learn.

The DIY family resource kit has been developed to assist a wide variety of family groups with useful information and topics that support family leadership, such as: • Setting up new family groups (or Kitchen Table groups) • Information on Enabling Good Lives • Facilitation and interpersonal communication skills • Managing conflict • Planning and monitoring projects • Creating a brand (for new groups) • How to influence – media and social media guides • Owning a home of your own Check out its Young Adult’s Guide to Flatting featuring the personal stories of four young Kiwis with disabilities whose vision of a “good life” included living “out in the world”.

The latest addition to the website is the Think Differently page – a DIY family resource kit for disabled persons and their families, on thinking about the future, funding and family leadership.

The project aims to create opportunities that support people with disabilities into roles valued in their communities. It encourages initiatives that enable participation in community and civic life, strengthen local communities, change attitudes, build and develop family leadership.

Visit www.carematters.org.nz and tell us what you think!

Seeking support workers?

Find them in your area online with MyCare’s new National Carer Matching Service.

Funded by the Ministry of Health, the service is free for people with disabilities under the age of 65 and their family/whanau carers.

Hundreds of workers have created profiles on the website of Carers NZ’s partner, MyCare.

Once your NASC has referred you to the free service (or self-refer by clicking the link on the top of the MyCare website), you can post jobs, view worker profiles, and make direct contact with workers.

MyCare offers other features for an annual upgrade fee. This service does not replace existing funding or relief care arrangements; it’s a new way to find support.

Contact MyCare to learn more! www.mycare.co.nz

Portia’s next step

By GEOFF LEWIS

You could see Portia’s eyes brimming with tears as she fought back the feelings of frustration and hurt from being treated differently, shunned, missed out and left out.

Portia Johnson has a mild form of Cri du Chat syndrome. About one child in 50,000 is diagnosed with the condition – or about one a year in New Zealand.

Portia, 22, with Juliet and Olivia, is the eldest of the three sisters all named after characters from Shakespeare’s plays – because both mum Karina and dad Wayne were born in Stratford, Taranaki. All the sisters were born in Whakatane where Wayne worked as a fire fighter at nearby Kawerau.

Cri-du-chat (cat’s cry) syndrome also known as 5p- (5p minus) syndrome, is a chromosomal condition that results when a piece of chromosome 5 is missing. Infants with this condition often have a high-pitched cry that sounds like that of a cat.

The condition is characterised by intellectual disability and delayed development, small head size (microcephaly), low birth weight, and weak muscle tone in infancy. Individuals affected also have distinctive facial features, including widely set eyes (hypertelorism), low-set ears, a small jaw, and a rounded face. Some children with cri-du-chat syndrome are born with a heart defect.

During pregnancy Karina was advised that Portia was small for her dates.

“I didn’t notice too much. It didn’t seem anything major. Both Wayne and I were small babies. When she was born she didn’t do the usual baby things and was delayed in all her milestones, but not enough to cause any great panic. She didn’t have the physical tell-tale signs for Cri du Chat; she is very mild on the spectrum. ”No one, including the paediatricians and therapists involved, had picked it up. It wasn’t until she was seven that she was eventually diagnosed through a blood test.”

While at the most able end of the syndrome, Portia had some major language difficulties and an intellectual disability – but some children with Cri du Chat never learn to walk independently or speak.

Portia walked at around 19 months, she also went on to ride a bike at age nine, Karina said.

Support was in place before Portia was diagnosed and she already had the services of a speech therapist, occupational and physiotherapists.

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As a pre-schooler she had an educational support worker. Programmes were put in place to help her gain language.

Always engaging, Portia was between five and six years old that she started to talk. She was taught the beginnings of sign language just to lessen her frustration – she knew what she wanted to say, but struggled to get it out. Today Portia can speak well, which is a credit to the dedication and patient work of her parents and therapists.

A placid, happy-go-lucky child, she didn’t really realise she was different until she went to school, Karina said.

“She went through mainstream at primary and intermediate and received ORS (On-going Resourcing Scheme funding), which allowed her to have a teacher aide to help her.

“In the juniors where everyone is learning to read, no one among her peers really noticed she was challenged. That became more obvious when her classmates went on to use their reading to learn, while Portia was still learning to read.

“The gaps widened. We started to notice she wasn’t progressing together with her peers. She had difficulty with maths and she was physically weak, her co-ordination and spatial awareness was poor, along with balance and concentration,” Karina said.

Things really started to hit home when she began high school. Socially she started to feel more alienated and unable to do the same things as other students, and slowly the friends she’d made in primary and intermediate melted away.

Portia came home and started typing up a speech on her laptop which she was given the opportunity to present at the school’s end of year assembly.

Standing at the lectern in front of 1600 students and teachers, she stunned the audience. It was a powerful, heart-felt plea for tolerance, inclusiveness and respect.

“You could have heard a pin drop,” Wayne said. He still has it recorded on his cell phone.

Portia’s experience with other children has been one of her greatest frustrations and sadness. The children she knew didn’t know how to react to her.

She was rarely accepted. Talking about it brings her to tears even today.

Her mum remembers one primary school birthday experience.

“We decided to take her to the zoo as a treat. We invited four other children – she had 10 to her previous party and only one reciprocated with an invitation. This time a couple of children we’d invited bailed out and in the end only two could come.

Portia said ‘Oh, that’s not going to be much of a party is it?’ She was used to going to her younger sisters’ birthdays with around 10-12 children.

“As a family we always included her, but she found it very frustrating when others didn’t.”

In high school she was content in the special unit.

She knew she couldn’t keep up academically, but she enjoyed the mainstream options like sewing, cooking, drama, (and for one year) English and science. Her main challenges were in mathematics and general communication with her mainstream classmates. She realised she couldn’t do NCEA and she wouldn’t go to university. She did a special education and life skills programmes while in the unit.

Her frustration boiled over one weekend at a School’s Out What’s Next course in Wellington during her last year of school. Karina and Portia returned to their motel where she just let it all out.

“There was a boy in my sister’s class who was making fun of the kids in the unit. I told mum I wished other people would just treat kids in the unit with more respect and include us. I wanted the principal to get up and tell them,” Portia said.

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Since then, Portia has gone on to do quite a lot of public speaking, joined the People First organisation run by people with learning disabilities, and has gone into schools and universities to talk about how to include people with disabilities.

Following school she didn’t have a lot of choices, and those on offer she didn’t like much. She spent two and a half years in Community Living’s Vocational Service which was good, but she wanted a job.

These days Portia’s life is looking up. In August last year she started her first paid job working for the Waikato Times under the Fairfax Creative Spirit scheme.

Photos: Geoff Lewis

Waikato Times administration and facilities manager Christine Wano said Creative Spirit was driven by the company’s Auckland head office.

“She has been well accepted by the team, and we hope she finds some satisfaction in being employed and working with other people,” Christine said.

“We have people with challenges employed in the major centres. Portia has been on the Attitude programme on TV which gives a background of Creative Spirit.

Portia is also keen to experience other joys of adult life – like going to the pub. She’s going flatting at the end of the year and wants to get her drivers licence. Her favourite hobbies are swimming and horse riding – she is a member of Cambridge RDA (Riding for the Disabled) and the Special Olympics Swimming team in Te Awamutu.

“

Portia has gone on to do , quite a lot of public speaking joined the People First organisation run by people d with learning disabilities, an has gone into schools and universities to talk about how to include people with disabilities.

“

“She started with us in August (2015) for a couple of hours a week to get the feel of things. We then extended her hours and she does 9am to 1.30pm Monday to Friday, where she undertakes a variety of tasks including collecting the mail, helping the advertising team with mail-outs and keeping the staff room tidy.

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From 2010 Karina worked part-time for four years in the national office of Parent to Parent. She helped provide early diagnosis information for parents, along with helping connect them with trained Support Parents who had experienced similar journeys. Karina has been a volunteer Support Parent for more than 18 years.

Now, after 22 years, Karina is looking forward to going back into full-time work, as PA for the national managers of NZCare Disability and HealthCare Rehabilitation services.

Karina is also a member and family rep on the Waikato Leadership Group of Enabling Good Lives – a new initiative to support the disability sector which brings together funding from several areas and aims to give families and disabled people a greater say in how and where funding is used.

This is the next step in enabling a good life for Portia.

Preparing to leave school Develop a plan that sets clear goals for where you would like to be Consider your Numeracy and literacy skills, what support and on-going education you will need Identify key people for areas you may need support with. For example filling in forms, legal documentation and disclosure of your personal information Plan for getting around the community now and in the future. You may need support to develop new skills to access public transport, or obtain a drivers licence Discuss career planning with a school careers adviser or school guidance counsellor Every tertiary provider has a contact person or a support service for disabled people; contact the tertiary provider for specific details Develop a plan to gain work skills and work place experience Contact youth transition or career services for assistance with career planning, CV development and job searching Contact your local Work and Income office to register as a job seeker

Contact the Association of Supported Employment Services New Zealand (ASENZ) for details of supported employment services in your area. Supported employment agencies provide assistance with job searching and ongoing support such as job coaches and work brokering Contact Workbridge office for supported employment and Job Support funding Contact Inclusive NZ to find out about vocational services in your area Explore job vacancies, online, in local newspapers or approach local businesses Do you have an IRD number? Get one Sign up to Real Me Do you have photo ID - Learners Licence, Passport, or 18+ card? Get one Think of ways you can keep in contact with friends you have at school when you leave If you have equipment provided by the Ministry of Education(MOE) that you think you will need to use after leaving school discuss with your leaf worker from Special Education Enrol to vote

Preparing to leave home Create a plan about how you would like your life to be and who you need to help make this happen Consider natural networks that can help support you to live as independently as possible Consider your skills that will help assist living as independently as possible, e.g. cooking, housework, budgeting …

Decide if you would like to live with others or alone Don’t be afraid to take a risk in trying new things, it is okay to make mistakes, it is how everyone learns Consider what you are going to do during the day? (work, leisure, education, social options, etc) Contact your local NASC agency if you require support in your home or a disability residential service Contact Housing New Zealand (HNZ), or real estate agents for help finding an accessible home Contact CCS Disability Action to enquire about people looking for flatmates

Contact your GP, NASC, ACC or HNZ for advice about modifications to existing homes and rental properties to make them accessible Contact HNZ to see if you are eligible for income-related housing Talk to Work and Income to ensure that you have all the benefits you are eligible for Be aware of WINZ advocacy services Know your rights (Code of Health and Disability Services consumer rights, Disclosure, Employment, Tenancy, etc) Contact CCS Disability Action about their criteria for a community case worker to assist with finding social and recreational activities Contact your local city council, community centre or NASC for information about social and recreational opportunities Contact your GP / practice nurse, IHC Library, or Relationship Services for advice about relationships and sexuality Seek legal advice on your rights as a parent after your child turns 18 years

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Power of the positive frame of mind Talking to Christopher (Chris) Nicholson late last year, only a few months after his kidney transplant, the impact and improvement in his health and vitality was profound. For the first time in a long time he was a happy young man, electric in his energy and enthusiasm for life.

By GEOFF LEWIS

A photograph taken with his sister Nadya earlier in 2015 shows Chris drawn, tired and grey (pictured right).

The difference the new organ made was fantastic and immediate – as soon as the kidney was sewn in and blood vessels connected.

His hands were warmer, skin tone improved. He quickly felt better than he had at any time in the almost 15 years as the new organ filtered the impurities from his blood that had sapped his vitality for more than half his life.

The trouble with Chris’ kidneys began in 2001 when he was in his second year at intermediate. No one knows why, or the cause; it isn’t hereditary and no one else in his family had similar problems.

Chris’ mum and dad, Suzanne (Suzie) and Nick Nicholson met in Wellington. Suzanne comes from an old Ruapuke farming family and Nick entered the world in Hamilton on VJ Day 1945.

Chris and younger sister Nadya were born in Wellington and the family arrived in Hamilton in 1992.

Things were pretty normal. Chris was the typical boy, full of bounce, who especially loved cricket.

Coping with Chris’ kidney condition has tested the family in all ways. But the Nicholsons had already learned to live with a disability as Suzie’s eye sight began to deteriorate in the early 1990s. She was diagnosed with acute glaucoma and has been in and out of hospital for a series of operations. Today, she has minimal vision in one eye.

Suzie tells a story about her own disability and Chris’ reaction to it.

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“We were in the shopping mall. I was pushing the pram with Nadya in it and Christopher was walking alongside. A large women bumped into me. Chris just looked her in the eye and said ‘don’t you bump into my mother, she can’t see’,” she said.

Then it became Chris’ turn to face a health challenge, in the second half of his last year at intermediate, He complained of feeling tired, unusually tired.

Suzie took him to the GP who diagnosed hay fever. But as the months rolled by he became increasingly ill. In desperation she took him to three doctors in one day.

“Christopher was playing in the school band and he’d been very sick for a week. We took him home and on the way we called in to the medical centre.

I really wanted to rule out meningococcal meningitis, because he had all the symptoms. They sent him straight to hospital. There the doctors gave him massive doses of penicillin. I took him back to the GP who diagnosed an allergy again and put him on antihistamines.”

By December Suzie was fed up with being told Chris had hay fever, so she took him to another GP who took a blood test – which revealed kidney problems, and within days he was in Waikato Hospital where a biopsy confirmed the rare kidney disease Focal Segmental Glomerolosclerosis (FSGS).

The late All Black legend Jonah Lomu, 40, was diagnosed with FSGS in 1995.

Life was quite hard for Chris, always feeling very tired. Pumped full of steroids, his face swollen, he became the target of teasing at school. He spent a lot of time off during his time at Hamilton Boys’ High School, but was generously supported by the school and his teachers, who organised a system allowing him to study at home.

City Council as a Civil Defence advisor and launched into study for a graduate diploma in earth sciences at Waikato University.

Despite feeling constantly tired and tiring very quickly, Chris made the most of his time and interests – showing the sort of fighting spirit that was to contribute so much to his ability to win over his kidney disease.

In year nine, and in the accelerate class, he completed a study on his condition and shared his work with his classmates – a task which also helped spark his interest in medicine.

Always keen to work with his hands he built a gazebo behind the family house and joined his dad in a six-year project to restore half of their Chartwell property from a swampy wilderness into an attractive area of native vegetation and board walks.

He entered university with the aim of studying for a mechanical engineering degree, but found himself hampered by not having studied calculus. An epiphany occurred and he decided instead to pursue his interest in medicine.

The effort continued down to the local creek where Chris designed and built a bridge and cut out the forms of the extinct moa and New Zealand giant eagle to give an idea of how the gully may have looked hundreds of years ago.

In 2008 he became a St John volunteer in Hamilton.

He attended the Auckland University of Technology (AUT) on the North Shore, and in 2012 graduated with a degree in paramedicine and with an emergency management certificate.

But probably his most spectacular creations came from his garage workshop. Following his father as a keen musician, Chris began making replicas of classic 1950s and ’60s Fender electric bass and Stratocaster guitars, with the help of parts ordered in from the USA. He built a 1.2m high model of a classic Wurlitzer juke box for Nadya’s 21st, and is building an instrument of his own design based on a sitar and lute.

However, by the time he had completed his studies, his health was too poor to work as a paramedic.

In 2014, with 15 per cent kidney function, he undertook a three-month internship with Hamilton

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Health-wise things came to the crunch in early 2015 when Chris’ kidney function fell off to only 12 per cent – a point where dialysis would be necessary, or a kidney transplant.

Dialysis is a horror requiring the patient’s blood to be purified by machine in sessions which can take six hours, three times a week. A decision had to be made. Chris had no shortage of willing donors – his sister, dad and mum all offered.

Suzie was found to be compatible and to prepare for the transplant went through many health and compatibility tests. Mother and son were interviewed by a psychologist to ensure both were going into a life-changing operation in the right frame of mind and for the right motives.

Suzie decided to improve her fitness and lose weight. Her regular visits to the gym took on a new meaning and were approached with determination.

The kidney transplant took place in Auckland Hospital on August 27, Chris’ 27th birthday, and went without a hitch, he said.

“We were in hospital for five days; I was up and around after a day and a half. It felt a little bit uncomfortable to start with, but apart from local pain I was feeling far more energetic, I didn’t need to have the afternoon naps I’d become so used to.”

By day five and six, Chris was able to go for short walks. At three weeks he was walking the 15-minute

route from their hotel to the hospital for his daily check. Back home in September, mother and son came under the care of Waikato Hospital.

Feeling far better, Chris soon began to consider his future.

“I’d had a niggling feeling about training to be an anaesthetic technician ever since finishing my paramedic’s degree. I checked the New Zealand Anaesthetic Technicians Society on-line and saw there was a trainee technician’s position available at North Shore Hospital. These are rare and I’d always liked the North Shore since I’d studied at AUT. “So I applied for the job and was short-listed as one of 12. I went through the interview process and was successful.”

It was the first proper job Chris had ever applied for.

Chris credits his success to a positive mind-set and the support of his family, friends and medical staff.

“Right from the get-go it was unspoken. We all had a positive frame of mind. All through school, playing cricket, even when my health was really poor, I still kept up my hobbies, worked around the house and got into study. Now I’m a completely different person, life is fantastic.”

Because he only has one kidney, he has to be careful with his activities and lifestyle. Chris can’t get into contact sports, but enjoys golf and tramping.

The transplant is a treatment, not a cure, Christopher must take a small pharmacy of anti-rejection drugs for the rest of his life, and there is the potential for things to go wrong. But so long as he keeps fit and healthy, and is careful with his diet – not a bad thing in itself – he should enjoy a long and productive life.

The donation of her kidney to help her son has had positive effects for Suzie too, who must also be mindful of her general health.

“Donating a kidney is one of the best things I’ve ever done in my life, up there with getting married and having Christopher and Nadya.”

Photos: Geoff Lewis

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PARENT TO PARENT MAGAZINE • MARCH 2016

Nick said the family was thankful for the fantastic support provided by Kidney Kids, a national organisation which supports children with kidney disease and their families. They were also very thankful for New Zealand’s public health system which had supported them every step of the way.

Social worlds are focus of PhD study What are the social worlds of young people with severe disabilities like after they’ve left school, and how does the need for care influence their relationships with others? This is what Auckland University lecturer Sue Spooner aims to discover as the subject of her PhD thesis.

Sue Spooner

By GEOFF LEWIS

Sue came from a teaching background working with vision-impaired students and their families in the Hawke’s Bay and Gisborne areas. In 2000 she took up a job with Auckland University’s Faculty of Education coordinating the national programme to train teachers working with learners with vision impairment.

Her PhD study Relations of Care: Framing the Social Worlds of Young Adults with Complex Needs, seeks to improve understanding of the influence of care on the relationships and social participation of young people with complex needs.

It is hoped the study will help identify ways of enhancing the social interactions and inclusion of these young people within their communities.

For the purpose of the study, complex needs are defined as young people with permanent, profound, multiple physical and sensory impairments who are unable to use spoken language and who are dependent on the care of others in all areas of daily life.

“In New Zealand young people with disabilities can stay at school until they are 21. I want to find out what happens to the social worlds of young people with complex needs after they leave school when they live at home with their families.

“These people are totally reliant on the care of others, often just family members and paid carers.

For some, their carers may be the only people they interact with.

“At the moment there is no real information about the number of families who are caring for their adult children with complex needs and what the social worlds of these young adults are like. I want to find out how many of these young people are cared for at home, what opportunities they have for social interaction, and the activities available to them in their communities.

“I also want to find out how the need for a high level of care influences social interaction. This means I will ask families to provide information about their child’s care, their relationships with others, and what is available to them in their local communities,” she said.

Sue’s study is made up of parts including a survey of families of young adults with complex needs aged 16 to 30, who have left school and live at home.

The survey is anonymous and no individuals or organisations will be identified.

It will be available online, and parents will be asked to share information about their children’s care, communication, social interactions and activities. At the end of the survey parents will be asked if they want to be involved in the final part of the study which will be in-depth interviews with a small number of selected parents.

“I am trying to reach as many families as possible and encourage them to participate in the study.

While there may be no immediate personal benefits from taking part, the information they provide will contribute to an awareness and understanding of the ways in which both individuals and communities can respond to, and include young people with complex needs.

“This is about valuing all human beings and not writing people off because they have a severe disability. Ultimately the aim is for a more caring society, one in which friendship and social participation are a part of everyone’s life.”

All information about the study will be on the survey website and Sue Spooner can be contacted by email s.spooner@auckland.ac.nz or phone 09 623 8899 ext 48720. https://auckland.au1.qualtrics.com/SE/?SID=SV_9BtA 8u2jL3MOgV7 PARENT TO PARENT MAGAZINE • MARCH 2016

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New option for seeking or offering home-based care MyCare is an online marketplace to help those seeking home-based services find people offering assistance in their communities. MyCare online tools make it easy to find carers in your local area, plan and schedule, and keep everyone informed and involved in day-to-day arrangements.

Do you or someone you support have a disability?

Hundreds of support workers from around New Zealand have created profiles at MyCare.

Once signed up, people will be able to: • View profiles of those seeking home-based work in your area • Post

jobs for viewing by workers

• Directly

message them to ask questions and make arrangements to meet for an interview

• View

their skills, experience and training to decide if they may be a good match for your needs.

Would you like to find care workers and relief carers in your area? If so, you may like to try the new National Carer Matching Service. It has been developed for people with disabilities and their families to help them easily connect with workers and relief carers in their communities. It’s free Carers NZ has partnered with MyCare to deliver the National Carer Matching Service, and access is free if you receive Ministry of Health Disability Support funding. You can access the service by asking your NASC to refer you, or you can self-refer by contacting Carers NZ on 0800 777 797 or by emailing centre@carers.net.nz. You can also selfrefer by clicking on the Disability Support link at the top of the page at www.mycare.co.nz (you will need your NHI number and the name of your NASC to complete the eligibility form).

For those who are eligible to use the free National Carer Matching Service, MyCare’s optional extra tools are available for an annual upgrade cost of $199 including GST. MyCare is currently offering a free 30-day subscription trial. A MyCare upgrade is an authorised purchase for those who use Individualised Funding.

To learn about the trial and a MyCare subscription, call MyCare on 0800 677 700 or visit www.mycare.co.nz.

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PARENT TO PARENT MAGAZINE • MARCH 2016

How to get your name on our Donation Wall of Fame Since forming in Auckland in 1983, Parent to Parent New Zealand has grown into a nationwide organisation with 11 regional offices, and demand for our services increases every year.

We are passionate and proud of our achievements – particularly our ability to respond to the changing needs and requirements of the families that use our services – and consistently receive overwhelming positive feedback from families.

• One-off donations • Text to donate • Automatic payments • Tax deductible payroll payments of $1 p/w (refundable immediately) • Bequests (three ways to make a bequest) • Become a member ($20 p/a) • Fundraising for a good cause? Think of Parent to Parent!

• Join Friends of Parent to Parent • Sponsor a child to a SibShop or SibCamp • Sponsor a parent to a Renew workshop • Sponsor a workshop in your region • Adopt-a-week – naming rights to a regional office for a week

Find out how individuals and companies can make a real difference to the lives of families of children with disabilities at parent2parent.org.nz or phone Sue Pairaudeau on 0508 236 236.

“Thank you, the information was amazing. We broke down in tears when we saw it all and we appreciated all the work that had gone into putting it together. By far the best information we have received in the time that we have been looking.”

“Praise the Lord for the Parent to Parent support groups and networks … we all come into this world different, but we find the open doors and pathways that lead us to the right help and support for whatever purpose or reason, because there are others who understand you and your children when others don’t.”

“The things I enjoyed about the SibShop were meeting people that know how I feel; learning different ways to get through the hard times; being able to talk freely; the food and friendly people; the sibs and activities. It really helped me getting to share my feelings, nice leaders, not forcing you to share anything.”

“Thank you so much for the information collected/ researched for me/us. Loads of info/sites/ organisations I would have no idea how I would have sourced them and with very little information on [son’s] deletion, I am so grateful Parent to Parent exists.”

“Autism in Arabic request: To be able to contact the service and to gain information for a family who has English as a second language, and to get the info in their native tongue, is so beneficial for me as an Early Intervention Teacher. The support was fabulous.”

Advertise in this magazine!

Reach 1000s of New Zealand parents - Parent to Parent members and volunteers nationwide - Government ministries - Child, health and disability organisations - Mayors and city councillors - Health professionals and services - Early childhood centres - Schools

Links to e-editions

are distributed via our 11 regional offices through their Facebook and e-newsletter networks, plus overseas to child disability networks and advocates, and Parent to Parent (USA and Australia)

E-editions and back editions are accessed via www.parent2parent.org.nz

Parent to Parent’s quarterly magazine is distributed in the

second week of March, June, September and December. The deadline for advertising is four weeks prior.

For advertising sizes, prices and specifications contact Parent to Parent business development manager Sue Pairaudeau 0508 236 236 or email suep@parent2parent.org.nz

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