Parent to Parent Magazine December 2018 by Parent to Parent NZ

NEW ZEALANDâ&#x20AC;&#x2122;S FAMILY DISABILITY MAGAZINE

DECEMBER 2017

Bo is a life-changer Love breaks barriers Cut-out Christmas tags

Appreciation coupons for kids

WIN

Kia ora readers...

ur main theme this December is about the canine besties helping young people with disabilities and their families live happier lives.

Meet Isla and Bo, Hannah and Chase, and read all about why they have such incredible bonds. The spirit of the season is sharing, so check out our cool Christmas recipe, or cut out gift tags and appreciation coupons for the kids. Email us your favourite Christmas/summer photo by February 1, and be in to win a $100 Prezzy Card. We’re running the best photos over two pages of summer ‘Out & About’ in the March issue.

Our guest columnist is thought leader Mark Benjamin who talks about preparing for a new era. It’s important the voices of differently abled people and their families/whānau are heard as an integral part of their different communities, so we encourage you to send us letters to the editor and have your say. Until 2018 … have a safe and restful break, with heart-warming family time, some sun and sea, laughs with friends, and an afternoon nap under a shady tree! Whatever your style, go well.

Welcome to our first regular columnist – Disability Rights Commissioner Paula Tesoriero MNZM. A disability advocate, mum, amputee and Beijing Paralympics gold medal cyclist, Paula is a very friendly face for disability at the Human Rights Commission.

Help us empower Kiwi families to lead good lives Editor: Sue Pairaudeau Editorial: Staff writers, guest contributors, and freelancers Monica Holt, Clare Chapman and Steph Bell-Jenkins Advertising: Carey McLaughlin Graphic design: Te Reo Hughes Cover: Isla Fisher by Lynda Mowat: Heartstrings Photography ISSN 2463-3631 (Print) ISSN 2463-3585 (Online) Copyright: Seek permission from the editor for the whole or part reproduction of any contents in this publication. Disclaimer: The views and opinions expressed in this publication are those of contributing writers and not necessarily those of Parent to Parent NZ.

Sue Pairaudeau, Editor

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Hono, kōrerotia, tautoko • Connect, inform, support family and whānau of Kiwis living with disabilities.

CONTENTS

Thriving in a loving family

Jeremy the Dud

Labrador’s love is golden

Chase, the chilled companion

Dogs in high demand

Southland salt-of-the-earth

Love breaks barriers

Opinion: Paula Tesoriero

Opinion: Mark Benjamin

Teen’s life-changing decision

Opinion: Annette Milligan

Sexuality, gender and autism

Cut-out Christmas tags

Making the most of meetings

New faces

Rubik’s Cube fruit salad & kids’ coupons

Service Directory

Parent to Parent December 2017

People

Little girl finally thrives in

loving family By CLARE CHAPMAN

N Home for life: Mike, Chevelle and Leanne. Photo: Coco Janssen

ine-year-old Chevelle has experienced things in her short life that many of us wouldn’t want to think about. When she was five she was taken into foster care, and between the ages of five and eight lived with nine different families. Dealing with that instability and uncertainty would be hard for any child, but for a little girl with complex needs it was even more so. Chevelle was diagnosed with foetal alcohol syndrome, ADHD and autism, a mild intellectual disability and dyspraxia, as well as anxiety issues. Despite her formative years, Chevelle is an amazing child who has overcome more than most of us and, after two years in her current home with adoring foster parents Leanne and Mike, is thriving. She was eight when she arrived to live with Leanne and Mike, and the transition was a significant one for the trio. Leanne and Mike did have extensive experience with children with special needs. Leanne is a teacher’s assistant in a special needs unit at a local primary school, and the pair had for some years provided respite care for the parents of children with special needs. “When Chevelle came to us, it took her a long time to trust,” Leanne says. “Playing was an issue; she didn’t really know how to play and she was well below National Standards in everything except reading – something she’s always loved. “What really got us was that we didn’t understand the level of trauma that would be involved and how that would affect her. She was having nightmares about her past and it took a long time for her to trust people generally. It was simple things too, like watching her understand that she wasn’t going to get beaten when she spilt a glass of milk.”

Parent to Parent December 2017

Horse riding has also helped her dyspraxia, which affects with her ability to order and process tasks.

Leanne says the issue of trust was a big one – whether that was trusting that Leanne would pick her up from school and she would get to come home, or trusting that there would be enough food to eat. Over the past two years, however, time has started to heal some issues she was facing, and she’s thriving. Leanne and Mike are now in the final stages of going through a process called Home For Life, which will allow Chevelle to live with the couple permanently. “Chevelle’s really settled into and loving life with us and her extended family. The first time she called me mummy I just wanted to cry and keep cuddling her. She’d never had a grandparent or uncles or aunties before, and now she’s got all these people in her family who all adore her.” And the milestones are being achieved thick and fast. Chevelle attends the mainstream local primary school and has a teacher aide for two hours a day. She’s either at, or just about achieving, National Standards in every subject, and has just started tennis lessons with Leanne’s brother.

“She’s also had a sleepover with my parents, which was a huge step for her,” Leanne says. Anxiety and learning to trust other adults has meant Chevelle was until very recently too scared to stay anywhere else – because she didn’t know if she would be picked up again. “Now, she’s playing really well too. She still struggles with friendships, and socially she’s at about a three or four-yearold level, but she’s getting there,” Leanne says. Like a typical little girl, Chevelle loves playing with her toys, Lego, drawing and reading. But it’s horses that intrigue her and offer a unique sense of calm. “She’s just horse-crazy,” Leanne says. “She went from going to horse riding lessons for children with special needs into a mainstream class. A year ago, she was being led around with a walker, now she’s cantering alone and doing small jumps. “She can be so hyperactive – I often call her an energiser bunny – she just doesn’t stop. But once she’s on a horse

Parent to Parent December 2017

Chevelle was diagnosed with foetal alcohol syndrome, ADHD and autism, a mild intellectual disability and dyspraxia, as well as anxiety issues.

she’s completely calm and focused. I’ve never understood what it is, but for some reason being around and riding horses instantly calms her.” Horse riding has also helped her dyspraxia, which affects her ability to order and process tasks. The weekly lessons Chevelle attends are the highlight of her week, and lately she attended a school holiday programme at Forge Equestrian Centre, which, Leanne says, is another huge step. “It’s the only place she’s happy to go in the holidays and be left.” For Leanne and Mike, their hope is that Chevelle has a happy life and learns to be as independent as possible. Her own horse is on the cards sometime in the future too. And for the couple, Leanne says having Chevelle join their family has taught them both how to be patient, and brought them closer as a couple. “She’s changed our lives in so many ways for the better.” Leanne first got in touch with Parent to Parent when Chevelle arrived and she’s since attended various courses as well as events with Chevelle. “They’ve been so helpful providing information about various things, especially with ADHD and foetal alcohol syndrome. Having that connection with Parent to Parent has been really valuable for us.”

Photo: Coco Janssen

Parent to Parent December 2017

News

Chloe Hayden, Sam Humphrey, Nick Boshier and Adam Bowes in Jeremy the Dud. Photograph: Robot Army

Satirical film reverses the world of disability

eremy the Dud is a comedy set in a world where everyone has a disability, and those that don't are treated with the same prejudice, stigma and condescending attitudes that people with disabilities face in our own society. The Australian short film has been released online after its trailer was viewed nearly 5 million times on Facebook in August. The full 20 minutes uses humour to reverse reality and challenge perceptions of disability that are real for one in four Kiwis living with a disability. In Jeremy’s world disability is the norm, and the PC term for people like him is ‘without specialty’; the urban slur is ‘dud’. His lanyard label tells strangers that his status is ‘without speciality’, making him the subject of uninformed assumptions, belittling comments and patronising wellmeaningness that verges on the absurd. Nick Boshier (Bondi Hipsters and Soul Mates) plays Jeremy, and is the only main cast member who does not have a disability in real life. The cast of Australian actors with

disabilities include Adam Bowes, Chloe Hayden and Sam Humphrey. As a person ‘without specialty’, it is expected Jeremy will become a helper, pushing wheelchairs, getting things down from the shelf or ‘reaching’, and wiping bottoms. In the real world, these jobs are important for the independence of people with a disability. A taxi driver slows his voice and asks if he’s sure he can travel alone; a potential employer calls him “adorable” and “cute”, and another thinks Jeremy’s quest for work is a joke. “We don’t hire people without specialty,” she says blatantly. Jeremy the Dud is the result of a partnership between Robot Army in Victoria and the charity gen-U. Writer-director Ryan Chamley, who doesn’t have a disability, is passionate about challenging ignorant thinking and promoting inclusion for groups that are marginalised. He consulted with the cast and other people with disabilities to write the script, which he hopes to turn into a series. • Jeremy the Dud is available to stream in full now

Parent to Parent December 2017

People

“It’s definitely given us a lot more freedom. I think when you’ve got kids with disabilities, sometimes it’s just easier to stay at home. Bo definitely gets us out into the community a lot more.”

Parent to Parent December 2017

Labrador’s love is golden By STEPH BELL-JENKINS

year after getting an assistance dog for daughter Isla, Auckland parents Sara and Gareth Stythe say the benefits to their family have been “amazing”. “Bo is helping all of us to live better as a family, and especially helping Isla with her unique behavioural challenges,” said Gareth of the gentle golden Labrador that joined their family last October. Isla, who was seven when Bo arrived and has since turned eight, was born with 2q23.1 Microdeletion Syndrome, a rare chromosomal disorder. She has a tiny piece of her second chromosome missing, causing mild to moderate Autism Spectrum Disorder, epilepsy, hyperactive behaviour and developmental delays. “Isla is a sensory seeker, which means she needs to touch and explore constantly to regulate her sensory system,” Sara said. Before Bo arrived, Isla was waking many times a night, leaving her and her parents exhausted. Meal times were also very challenging. “Often, Isla would not eat her dinner, or would run around the table in between bites,” Gareth said. “We had to resort to feeding her while she played on the computer because that was the only way she would eat. We felt it wasn’t a good thing to do, but it was the lesser of two evils. Better that she had some food rather than waking up hungry at 2am.” On top of that, family outings had become so difficult it was easier to keep Isla at home. “When we went out walking, Isla would constantly want to stop and go back to touch objects like trees, power poles and letterboxes,” Sara said. “She is impulsive and unaware of the dangers of the world, and because her spatial awareness isn’t what it should be,

she would walk right through the middle of people’s picnics and stand on their hands and bags. “It was a bit like chasing around after a toddler in a sevenyear-old body.” For these reasons – and because they wanted to help Isla gain more independence as she grew older – Sara and Gareth decided to apply for an assistance dog. With “incredible” support from their friends and the local community, the Glendowie couple managed to raise $20,000 towards Bo’s $46,000 breeding and training costs. Now, a year after getting their golden Labrador, they say every cent was worth it. “He’s changed our life in so many ways,” Sara said. “The main thing for me is being able to walk places, because Isla’s tethered to him with a waistband. We can walk to and from school now without taking forever because he keeps her focused and moving forward. And when we’re out it just takes the pressure off me because I know she’s attached to him and she can’t go anywhere. “It’s definitely given us a lot more freedom. I think when you’ve got kids with disabilities, sometimes it’s just easier to stay at home. Bo definitely gets us out into the community a lot more.” Additionally, with Bo curled up on her bed, Isla is now sleeping through the night, and if she does wake up she can settle herself back to sleep. Dinner times are much easier too. “Now Isla takes pride in getting Bo to lie on his bed while she eats a healthy dinner at the table,” Gareth said.

Sara has created a website to talk about her parenting journey with Isla, and has written several blogs about her family’s experiences with Bo, including applying and fundraising for an assistance dog. To read more visit www.simplyisla.com

Parent to Parent December 2017

Chase is one ‘chilled’ companion By STEVEN MAHONEY

annah Mullins struggled to breathe when she was born. To this day, no-one really understands why. She has small bones, weakened muscles, gets around in a power chair, and a simple cold can last months. Life can be challenging. That’s where Chase comes in. He’s is a fully-trained, internationally recognised service-dog acquired through Assistance Dogs New Zealand. “One of the things we got Chase for initially was to help pick things up, as it’s quite easy for Hannah to drop things with her hand strength,” says her mum Donna. “We just wanted to have a bit of help at home.” In the three years since Chase joined the family, however, he has become so much more than just a working dog. “A lot of it is about therapy and assistance and companionship,” continues Donna. “That’s quite undervalued; people don’t realise the importance of it for people with disabilities.” Finding the right dog to fit into Hannah’s life was an important part of the process. “I think Chase was the second dog we met,” says Donna, “and he was very gentle. Hannah’s bones are very, very tiny, so you can’t have anything jumping around or it will hurt her. Different clients need different types of dogs. For Hannah it was about having a dog that was pretty chilled.” Hannah has to undergo regular surgeries, and wherever she goes Chase is right there beside her. He rides with her in ambulances, follows her to Ronald McDonald House, Starship Children’s Hospital, and even interacts with other children in the wards. Having Chase also helps Hannah from a social perspective. “When she goes out with him, people will see Chase and that’s an icebreaker to initiate conversation.

Parent to Parent December 2017

Hannah Mullins and Chase. Photo: Steven Mahoney

“When she goes out with him, people will see Chase and that’s an icebreaker to initiate conversation.”

“They need to talk to Hannah to ask what his name is, and if they can pat him.” Donna believes interactions like these can help strangers learn something too. “People see others in a wheelchair and think they have ‘wheelchair disease’ and they’re all the same. They assume that if you speak slower because your muscles are weak that you are not intelligent. But actually, there’s usually a lot going on up there!” And don’t even dream of saying a negative word about Chase. “Oh yes, she will tell you off! No one’s allowed to say anything against Chase. You couldn’t really imagine life without Chase now could you Hannah?” “No. He gets me out, and he helps me, and he plays with me.”

Dogs in high demand

Assistance Dogs NZ co-founder Julie Hancox. Photo: Steven Mahoney

By STEVEN MAHONEY

fter many years in the New Zealand servicedog industry, Julie Hancox saw a need for dogs that could work with a wider range of disabilities, so Julie and husband Rick founded Assistance Dogs New Zealand (ADNZ) in 2008.

cover it. So that’s why we started ADNZ – we wanted to help a whole lot more.”

“There are working dogs available for those with visionimpairments, hearing impairments, epilepsy or mobility requirements. But what was missing were dogs for diabetic alert, autism, Down syndrome, chromosome deletion disorders, cerebral palsy and multiple sclerosis,” Julie says.

“There’s a lot more to it than just putting a jacket on your dog and taking it out. The dog has to perform a specific role and be comfortable doing that both in the home and out in public,” she says.

“People with a whole range of disabilities were missing out because we didn’t have an organisation in New Zealand to

Raising and training dogs for a specific disability is no easy task.

“When we first started I was training dogs from what was available to us locally. We had about two in 10 dogs from the general population succeed in their role.”

Parent to Parent December 2017

“Without a doubt, the dogs give a huge amount of emotional support and companionship.”

WIN a copy of all dogs have ADHD by Kathy Hoopmann

A big break came in 2010 when Guide Dogs Queensland donated several dogs suitable for breeding from Australia. Julie now breeds dogs temperamentally and physically more suited to their roles, which has seen placement success rise dramatically from 20% to 98%. Service-dogs can be trained for a range of disability-specific tasks, from alerting a caregiver to a seizure, to picking up items for a child in a wheelchair, to smelling a dangerous drop in blood-sugar in a diabetic child. Many of the positive changes they bring, however, go well beyond the tasks they are trained for. “Without a doubt, the dogs give a huge amount of emotional support and companionship,” says Julie. “It’s a component that is often underestimated. For example, when you have a child who has autism who isn’t social, their dog can be a huge bridge in bringing the public to them. The child is more likely to respond because the interaction is around a topic of interest they love and can share with other people.” The current demand for service dogs is more than Julie can keep up with, but this doesn’t stop her from having big dreams. “Our current waiting list is 10 years. If we can get a staff training programme up and running, and pay more trainers, my hope for ADNZ is that it becomes a sustainable longterm organisation. There's a lot to be done!”

To learn more about ADNZ visit https://assistancedogstrust.org.nz

Parent to Parent December 2017

To go into the draw to win this book, see the competition post on our Facebook page, like it, then share it! www.facebook.com/parent2parentnz

Southland salt-of-the-earth The Marshall family.

Photo: supplied

By CLARE CHAPMAN

he four Marshall siblings were born and raised on a remote cattle farm in rural Southland. It’s these beginnings that have shaped their lives as adults closely connected with their rural heritage. For parents Juli and Dave, a saltof-the-earth attitude has ensured their family has prospered, although things haven’t always been easy. Their first-born twins Natalie and Ben, are now 30. With various complications related to their early arrival into the world at 26 weeks, Juli and Dave were told their development would probably be delayed as a result. As such, it wasn’t for a number of months that Juli and Dave realised something was amiss. “Doctors told us that because they were premature we had to wait until the twins were two, and that they had no concerns before then, even when we raised them,” Juli says. “Natalie developed normally, but when we noticed things with Ben that we didn’t think were right, doctors kept telling us they had to look at their age and take away three months because of when they were born.” Ben took longer to roll, crawl and walk. “He started to talk, but then the words stopped and he stopped talking altogether.” It was at this stage, when he was about one and having difficulty rolling over, that Juli knew something was wrong.

Eventually, he was diagnosed with a global development disorder and cerebral palsy. However, it was not until years later when his younger brother started to fall behind in development that a link was made and both boys diagnosed with an unspecified genetic disorder. Younger brother Travis, now 24, has the same condition as Ben, although he doesn’t have cerebral palsy so is more physically active. “Travis also needs 24-7 support,” Juli says. “He was about 18 months old when we started wondering about his development, and by that time his younger brother Wade had arrived and was about two months old.” In the first few months of Travis’ life he appeared to develop as expected. It was not until his language stopped they realised something was wrong. “When he was diagnosed with a global development disorder, the doctors realised that it was something genetic, but it has always been unspecified. That was hard because I’m a ‘why’ person, and so you want to know why but there’s never been an answer. Now, ’though, I accept it for what it is.” Both boys are non-verbal but can communicate effectively with Sign Language. For Ben it’s slightly harder because of his motor skills, although his parents are always able to translate when others find his signs difficult to understand. They both use iPads, which has opened a powerful communication channel for them. Parent to Parent December 2017

“They have their love-hate moments, but Wade and Natalie have been really great advocates for their brothers.”

Juli and Dave are steadfast in their attitudes. Despite working on the farm – a job big enough on its own – the pair care for both adult sons at the same time. “It’s just part and parcel,” Juli says. “We just care for them. Travis especially fits in really well; he loves being on the farm and helping out, and he helps me in the office a bit too.” Ben spends three days a week at a day base in Invercargill, while Travis is on the farm full-time. “Travis loves working with his dad, he always has, and Ben loves being out on the farm too.” That’s something that’s shared between all four siblings. Natalie, who recently gained a doctorate in food science, is set to head off to Africa for a few weeks with her husband before moving to Edinburgh where she will take on a new job. Wade is just as much into grabbing life by the horns; he’s spent time in Australia, around New Zealand and most recently in Canada where he’s currently working on a ranch. “The four of them are like any other siblings,” Juli says. “They have their love-hate moments, but Wade and Natalie have been really great advocates for their brothers. They don’t mollycoddle them ’though; they just treat them as they treat each other.” Since the boys finished school, the Marshalls have struggled somewhat with their rural location, finding that many of the transport and other facilities the boys had access to are no longer available. In particular, transport into town or to activities is no longer funded, and there’s no public transport. “There’s a cost for Ben’s travel to his day base in town, for example, because the funding for services just isn’t there.” That’s not stopped the family doing what needs to be done, and Juli and Dave are the types that simply muck in and get on with it. As for the future, Juli says they’re open-minded about what the options are for Ben and Travis, but it’s day-by-day on the farm for now.

Parent to Parent December 2017

If I knew then what I know now …

uli Marshall is a busy woman. She works part time on the family farm with her husband Dave, and also does the administration for the farming business. She’s a chairperson for IHC, and this year she’s become a support parent for Parent to Parent. That’s on top of caring for her two adult sons Ben and Travis, who need full-time support. “Until recently, I wasn’t aware of the services Parent to Parent provided, and when I realised I did the workshops and courses to become a support parent,” Juli says. “They were absolutely fantastic. It was great meeting all these like-minded people and I found it quite an insight into myself too.”

It was great meeting all these like-minded people and I found it quite an insight into myself too.

Being available for other parents who have children with disabilities is something she’s passionate about, describing her life’s course as somewhat of a rollercoaster of emotions at times. “I’ve been through it and if I knew then what I know now, it would have been a lot easier,” she says. “As you’re going through the system, I think you often end up with self-doubt because it is such a rollercoaster. I just really want for more parents not to have to go through any unnecessary tough times and being a support parent, I hope I can help and support those who need it.” Juli’s always active in her community too, visiting the Parent to Parent offices in Invercargill with Ben each Friday on their ‘out and about’ day, and she hopes to continue to make connections within the community and through Parent to Parent to help others in any way she can.

About

Carmel Sepuloni MP for Kelston Carmel Sepuloni is of Samoan, Tongan and NZ European decent. Born and raised in Waitara, she has lived in Auckland since 1996. Carmel has always been committed to improving social, health and educational outcomes for all New Zealanders, but has especially focused during her career on low socioeconomic groups; Māori, Pacific, disabled people and sole parents. During her political career Carmel has brought to the fore the slashing of the training incentive allowance, made public the impact of cuts to ACC funding for survivors of sexual violence, campaigned for better legislation around social workers and fought for the right to privacy for social service users.

As the Minister for Social Development and Disability issues Carmel is looking forward to building a fairer welfare system that treats New Zealanders with the respect, upholds their dignity and supports them and their families to realise their potential. Outside of politics Carmel has worked broadly across the health and education sectors as a Literacy Educator with youth in West Auckland, teaching in Samoa, managing equity programmes at the University of Auckland, managing the Pacific non-regulated health research project, and acting as CEO of New Zealand’s only national Pacific health provider, Vaka Tautua. Carmel is the mother of two boys aged four and 19.

Labour Disability Issues Policy

ne in four New Zealanders identify as having a disability. Labour believes that a truly inclusive society is one in which disabled people have meaningful lives within their communities based on respect and dignity, have their diversity recognised, and their human rights supported. Disabled people should be involved in every aspect of decision-making about their lives, with support where needed, from families. This is reflected in the motto ‘Nothing about us without us’.

New Zealand has been recognised for its leadership on disability issues internationally. However, there is still a long way to go before all disabled people enjoy a fully inclusive society that values them and enhances their participation. Each disabled person must be recognised as an individual person with their own set of needs as aspirations – no two people with a disability are the same. We believe that disabled people should be supported and encouraged to follow their aspirations, make their own choices, and to lead a quality life. Parent to Parent December 2017

People

Love breaks barriers By MONICA HOLT

ho says people with disabilities shouldn’t find love? Not Hamilton couple Jess Adams and Mike Pulman who are happily together, breaking down barriers around disabilities and relationships. Jess, 29, has Aspergers and is in her first year of a music degree at the University of Waikato. Mike, 25, has spinal muscular atrophy, is a power chair user, and works as a journalist, blogger and advocate in the disability sector. The pair, in a serious relationship for 18 months, are engaging, articulate and focused about their life together and the challenges they face. They show a real affection for each other. Both were newcomers to Hamilton when they met as students at Wintec in 2014. They first became Facebook friends, and it was another couple of years before Mike asked Jess out. “He was very persistent! “I think I was a little bit scared to date him because of the physical disability, but then I thought, why not? “In the early days we had those really deep heart-to-heart

Parent to Parent December 2017

conversations when you are on the phone for about four hours and you don’t even realise it until it is 3 o’clock in the morning,” says Jess. Early dating included “just the usual stuff” – dinners, movies, going to the zoo, and coffee at Hamilton’s Lake Rotoroa. Both agree the companionship is something they really enjoy. “We go out quite a bit don’t we?” says Mike. They have been to Wellington for a holiday, and other places on random day trips. Mike’s professional break came when he got media accreditation to cover the Hamilton-based Super Rugby franchise the Chiefs. The ‘real world experience’ means his Media Arts studies have been put on ice, as the exposure he got through covering a high-profile sports team meant other doors opened. “I was lucky enough to have access to the Chiefs. The disability sector thought ‘this is really cool’ and said ‘we want you to tell your story and how you got there’. “From that I started speaking at a whole lot of events about my journey. The more I did that, the more I realised there were some pretty significant issues in our sector; the barriers people face.

“I think I was a little bit scared to date him because of the physical disability, but then I thought, why not?”

“So that pulled me in to wanting to advocate and making it not so much about my journey and what I have done, but more so about what is really happening for our community. We have come a long way, but there is still a lot of injustice out there.” Mike cites unfair access to education and barriers to employment as the two biggest challenges for the disability sector. “Not including disabled learners in schools has such a massive flow-on effect, as they are not seen as much by their non-disabled peers, and are not moving on to tertiary education.”

Photos: Sue Pairaudeau

needs and the time and attention. But I was never ‘Mike the disabled child’, I was Mike.’” “That was the best thing they could have done.”

Jess says another issue is sexuality. “Society dictates that because you are disabled you are not meant to have sexual desires and seek a partner.”

Mike says he has already out-lived his suggested life expectancy by 15 years, and through his relationship you can see he has a ‘make the most of life’ outlook.

An accomplished public speaker, Mike has done a number of speaking engagements.

His family support his relationship, “We don’t really talk about it a whole lot to be honest because they know I am with Jess, and they like Jess, and they let me do my own thing.”

A highlight was speaking at the 80th celebration of CCS Disability Action in Hamilton, in front of an audience which included the then Prime Minister Sir John Key. He was also the MC and guest speaker at an IHC international conference on workability at SkyCity in Auckland. Mike credits his upbringing in Te Kuiti with mum Basil, dad Lew, and older sister Jenna as shaping his philosophy about disability issues.

A talented writer, Mike runs a blog called The Real Michael Pulman and covers wide ranging topics under the headings sport, gaming, disability, politics and life theory. He writes for international news websites including lastwordonsports. com. He also has done some cricket writing, covering the Black Caps. Mike is a keen gamer and spends a lot of time on PlayStation.

“As I grew up the disability was not a big deal in our family. It was relevant, obviously, as it dictates so many additional Parent to Parent December 2017

Both would like to stress that they are no different in wanting to find love.

After the bachelor of music Jess plans to do a postgraduate diploma in education and become an intermediate or high school music teacher. Academic study is a tough road and there have been a few ups and downs. Her psychologist believes she may also be gifted as she has an astounding memory and recall for information. Jess was born and grew up in Auckland (“I can’t stand the place now”) and excelled in music, including flute, when she attended James Cook High School. “Having autism, we all have our own special talents that we are all gifted with, and one of mine is music. “It is a talent that I don’t know where it comes from as no one else in my family is musical. For someone like me, with the other struggles I have in life, it is also an escape.” Before moving to Hamilton she lived in Huntly for a few years with her mother. While the Asperger’s was only diagnosed in March this year, Jess always knew she was different and struggled socially and also at subjects like maths. She also battles severe endometriosis, has endured a number of surgeries, and has to manage chronic fatigue and pain. Jess is very aware of not blurring the line between relationship and carer, and while she will do some of Mike’s personal care if required, she prefers not to. For example, she will make his breakfast if necessary as he is “very particular” and she knows what he likes. One thing to manage in the relationship is other people. Says Mike: “I guess that is one of the things about our relationship and we talk about it a lot. Yes we have got our relationship, but there are always other people involved in it because of our needs. “I am very conscious of all that – Jess is my partner, not

Parent to Parent December 2017

my carer. We are very open about that and it is a learning process.” Jess chips in: “It is kind of like I am not only in a relationship with Mike but I am in a relationship with six other people as well.” Jess spends a lot of time at Mike’s place, has given notice on her flat, and is moving in with him. It has been a big year and they are looking forward to having a rest over the summer and hanging out together. Both would like to stress that they are no different in wanting to find love. “Relationships are possible for people with disabilities and it is a natural part of life; you have relationships all the time and you have ups and downs,” says Mike. “Yes the disabilities are kind of relevant in our relationship, but they are kind of not as well, so we just get on with it.” Jess says part of the reason things work so well as from a disability perspective, Mike understands her more than a lot of people.

What is spinal muscular atrophy?

pinal Muscular Atrophy (SMA) is a rare inherited genetic musclewasting disease characterised by a loss of nerve cells called motor neurons. It manifests in various degrees of severity, which all have in common progressive muscle wasting and mobility impairment. The affected muscles not only include the muscles you see, like in arms and legs, but all internal muscles needed for breathing, coughing and swallowing. The weakening of the respiratory muscles can lead to an increased tendency for pneumonia and other lung problems. SMA is caused by an altered gene that does not function the way it should. The condition is passed on by what is known as autosomal recessive inheritance, and for an individual to be affected with SMA they need to have inherited an altered gene from both parents. One person in 35 unknowingly carries this gene. If a couple already has a child with the disease, each of their subsequent children has a one-in-four chance of inheriting SMA. SMA is the most common genetic cause of infant death.

What is Aspergers?

ans Asperger (February 18, 1906 – October 21, 1980) was an Austrian paediatrician and child psychologist who published the first definition of Asperger syndrome in 1944. He called these children ‘little professors’ because of their ability to talk about their favourite subject in great detail. Convinced many would use their special talents in adulthood, he followed one child, Fritz, who became a professor of astronomy and solved an error he originally noticed as a child in Newton’s work. Ironically, as a child Asperger appears to have also exhibited features of the very condition named after him. Since his time, it has become clear that the condition does not necessarily entail high intelligence and/or academic success. Asperger died before his identification of this pattern of behaviour became widely recognised, because his work was mostly in German and little-translated. The first person to use the term ‘Asperger’s syndrome’ in a paper was British researcher Lorna Wing. Her paper Asperger’s syndrome: a clinical account was published in 1981. In 2013 the DSM-5 included Asperger syndrome under the umbrella of the autism spectrum disorder (ASD). Many people with Aspergers refer to themselves as ‘Aspies’. Parent to Parent December 2017

Opinion

Being a disabled parent

hile there’s a lot written about being the parent of a disabled child, less is written about being a disabled parent writes PAULA TESORIERO, Disability Rights Commissioner and mum to Samuel. Nothing can quite prepare you for being a parent. For me, preparation began some years before having my beautiful son Samuel, now five years old.

challenging time and there were no obvious professional people to talk to about this. But in the end I reasoned, “So what if I did have a child that turned out like me?” – a person who has achieved a lot, has great family and friends, is a great mum, sister, daughter and, like all disabled people, can contribute positively to their community.

When I was lucky enough to fall pregnant the fears of judgement kicked in heavily. The first few months were emotionally rough, I wanted to hide for the entire Disabled people bring so much value to our communities, pregnancy. And by this stage there were the ‘well-meaning’ but unfortunately negative attitudes and misconceptions people who asked about can persist. We end up amputees as parents and questioning our decisions and whether the cause of my worrying about being judged. amputations would be passed “. . . suddenly the on to my child. Natural This was my experience in physicality of the pregnancy curiosity? Or were my worst the years before I became feelings about being judged a parent; I debated whether started to take its toll . . . I becoming real? it was the right thing to do.

did not raise these things for

What if my children turned When I finally did raise these fear of ‘I told you it would be out like me? Genetic testing questions with those involved found the cause of my hard carrying a child’.” in my pregnancy care, these disability (amniotic banding) issues were fairly new to was not hereditary and I them. It highlighted a need had no greater possibility of for a greater awareness of having a child with a disability issues expectant parents with disabilities might face. than any other person. But I was still worried that people When I got more on top of the emotional issues, suddenly would judge me anyway. Some doctors were keen to remind the physicality of the pregnancy started to take its toll. I me it would be hard on my legs. managed to walk until the end of the pregnancy, but not Sadly these thoughts reflected my own fear about peoples’ well and with considerable pain. I did not raise these things perceptions of there being something ‘wrong’ with disability. for fear of “I told you it would be hard carrying a child”. How could I bring a person into the world and expose them The only time anyone really asked me about my disability to that? And deep down, I wondered whether I thought was to ask whether I intended to keep my leg on during there was something ‘wrong’ in being me. This was a very

Parent to Parent December 2017

“Parenting is tough enough, but disability adds a dimension that is rarely talked about. . .”

Disability Rights Commissioner Paula Tesoriero with Samuel (now five). Photo: Supplied

labour. My inside voice was screaming loudly by this stage “I have no idea”. It turns out planning ahead is a good idea – you lose your dignity fast when the moment arises. While the pregnancy was tough physically and emotionally, the period post-birth was where I really felt invisible. Not being able to have Samuel’s dad stay overnight made it impossible – my stump had swollen so much I could not put my leg on and get to Samuel in the night (nurses are pretty busy, so often time would pass by). Someone told me to hop – so I did. And I fell. Hard. Multiple times. This experience set me up to fail on a number of fronts and was the trigger for a horrible period of post-natal depression which, on top of my legs taking months to come right, was a tough time. There were also a range of things as a new mum at home I found physically hard with my legs in a way I had not found before. Coffee groups were great, but the conversation was mostly on how our babes were sleeping (or not!), not how someone like me might be coping with being in pain and not walking properly. Discussions with professionals were about weigh-ins, feeding and other such things. There just did not seem to

be anyone to talk with about issues I was confronting as a disabled parent. Of course, I’d go through it again in a heartbeat for my beautiful boy. But my experiences taught me some important things about being and supporting a disabled parent. Firstly: Share your fears and get help. Understand the impact of pregnancy and birth on your disability (if you can, I never found any literature or material). Be honest with those involved in your care about issues you’re tackling and insist they be dealt with. I can only imagine that for a number of disabled people their experience would be even harder than mine. So it’s important the right supports are in place. Parenting is tough enough, but disability adds a dimension that is rarely talked about, however we need to start those conversations. While I was free to make my own choices, I am acutely aware that some disabled people are not. All people contemplating having kids bring a set of experiences and backgrounds. Disability is no different. It just means

Parent to Parent December 2017

supporting your loved one to have all the right information about being a disabled parent and insisting the right support is provided so that parenting is possible. Being a disabled parent adds diversity to our world. I know Samuel and his friends will grow up tolerant and with a sound understanding of disability. I am three months into my role as the Disability Rights Commissioner and based on personal experiences like this one, I am keen to challenge misconceptions and ensure disability is seen as ‘business as usual’. This means creating the right environment: the policy settings, supports and attitudes that enable all disabled New Zealanders to thrive. Article 23 of the UN Convention on the Rights of Persons with Disabilities protects the right to determine whether disabled people have children.

•

Paula Tesoriero MNZM is New Zealand’s Disability Rights Commissioner. She is an amputee and a mum to a five-year-old son. Follow Paula on Facebook www.facebook.com/ PaulaTesorieroHRC/ and Twitter @paulatesoriero

Resources: The New Zealand Families Commission Disabled Parents: Diversity, Experiences and Support Needs (2012) is a start and confirms there’s not a lot of data or support resources out there.

Parent to Parent December 2017

News

Winning Attitude

Spotlight on disability in NZ

Disability Pride Week 2017 events are nationwide from November 30 to December 5. The week is about bringing disabled people together to celebrate their common humanity through a variety of activities, sharing stories and creativity.

The Attitude Entrepreneur Award celebrates a person with a disability who has developed his or her own business or social enterprise. Robbie and her team Ben Scott, Simone Haylett-Petty and Jessica Pantoja-Sanders started the foundation in 2013 to empower people with disabilities through trade. It is named after Robbie’s prosthetic leg called ‘Lucy leg’.

“Our vision is for Aotearoa New Zealand to be a place where we as disabled people feel proud of ourselves and our country. We welcome and invite you to be part of the week,” says co-covenor Rachel Noble. Disability Pride Week incorporates the UN International Day for Disabled People on December 3. The day aims to promote an understanding of disability issues and to mobilise support for the dignity, rights and wellbeing of disabled people.

Robbie was nominated alongside Bruce 'Pic' Picot, creator of Pic's Peanut Butter, and Victoria Lessing, founder of Merge, which provides tutorials on New Zealand Sign Language and Deaf culture as well as consultancy services.

Contact rachel@ennoble.nz or nick@ruane.co.nz for more information.

ongratulations to Robbie Francis and the team at the Lucy Foundation for winning the Entrepreneur Award at the 2017 Attitude Awards on November 9.

In 2013 Robbie was given the opportunity to intern for an international disability rights group in Mexico. Having witnessed first-hand the shocking conditions many people with disabilities are forced to live in, she decided to become an active part of the solution. So in 2014 she and her friends co-founded The Lucy Foundation. It works with coffee-farming families with or without disabilities in Pluma Hidalgo, Mexico, to produce ethical and sustainable coffee for export back to New Zealand. Robbie is also studying a PhD at Otago University on the displacement of disabled people in conflict. The Attitude Awards is now in its10th year, and is the only national televised event celebrating the achievements of New Zealanders living with disabilities. The black-tie gala ceremony held at Auckland’s ANZ Viaduct Event Centre recognises artists, athletes, employers, young people, and game-changers.

Water safety skills for families Last month the Halberg Disability Sport Foundation announced it will launch a water skills training course for physically disabled young New Zealanders and their families in Auckland and Wellington this summer. The ‘Flight Centre Foundation Halberg Water Skills for Life’ programme will see the Halberg Foundation adapting the Water Safety New Zealand ‘Water Skills for Life’ course aimed at teaching five to13-year-olds how to keep themselves safe in, on and around water. The programme in partnership with the Flight Centre Foundation and Water Safety New Zealand launched in Auckland on November 11, with a second event early 2018 in Wellington. The Halberg Disability Sport Foundation is collaborating with Water Safety New Zealand and Swimming New Zealand to adapt the Water Skills for Life course to include physically disabled young people. There are seven skill sets (consisting of 21 in-water skills and six water safety awareness-related skills). The adapted course will also include training to parents/caregivers to support the participants in the water.

Parent to Parent December 2017

Opinion

Preparing for a new era By MARK BENJAMIN

ince the 2008 ‘Inquiry into the quality of care and service provision for people with disabilities’, things have been changing.

There have been initiatives to ‘try out’ approaches that result in disabled people and families having more choice and control. These initiatives have been restricted to certain parts of the country and have included Choice in Community Living, Enabling Good Lives (EGL) demonstrations in Christchurch and the Waikato, Local Area Co-ordination, and Enhanced Individualised Funding. In February 2017, Cabinet agreed to “an overall approach, based on the Enabling Good Lives (EGL) vision and principles, to transforming the cross-government disability support system”. The period of piecemeal trials is concluding and the era of system transformation is beginning. Currently, groups of disabled people, families, whānau, providers and officials are working together on the key things to happen in the MidCentral Region where the first full transformation will take place next year. It is too early to accurately predict what the final version may look like. However, there are several things that are very likely to be core elements of the new system. These things include people having:

Parent to Parent December 2017

•

A new way to work out funding that is strengths-based

•

Personal budget

•

Range of ways they can choose to manage their budgets

•

Access to an independent person (EGL Connector) who they can use to explore options and ideas with

•

Easier access to crisis support, building stronger disabled persons and family networks

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A regional and national leadership approach where disabled people and families have key roles.

These changes are intended to result in disabled people and families having more say in creating good lives for themselves, easier systems, and a much greater ability to build supports that work for them. This requires change for everyone. It will take time to make sure these changes actually work better for people. Disabled people and families will be able to refine ‘the new system’. It is intended to add new opportunities, not erode things that are currently working well for families. If families are happy with existing supports, it is likely they can continue with them while also choosing to have the service manage their budget. For some, needing to wait will create frustration. However, it is an opportunity for us all to begin

People

to think differently, prepare, and for some of us to learn new skills. The types of things that will enable individuals and families to make the best use of these new opportunities include: •

Having an idea of what a good life looks like for our family (values, dreams and goals)

•

Being clear in expressing what we want (many of us are better at expressing what we don’t want!)

•

Knowing some basic ways to negotiate with others (supports/services)

•

Becoming clear about how much we want to do ourselves and what we want others to do (from a range of options)

•

Ways we can monitor and positively influence things as they roll out.

Already there are many examples of how more choice and a flexible person-directed approach works better for individuals and families. The timeline for the change process is not finalised. However, it is likely to start in the MidCentral Region, 1 July, 2018. It will take time for all of us to become clear about what these changes really mean, and how we can best use new opportunities. Until then, take the opportunity to access face-to-face events that will keep you up to date with progress, offer chances for people to feed in their thoughts and learn new skills (or refine existing skills). Care Matters, a service delivered by SAMS and Parent to Parent, will be one service offering face-to-face workshops and a website to enable families and whānau to better understand these changes, provide practical examples of how to prepare, and explore possibilities. www.carematters. org.nz There is also a website specifically designed to keep everyone aware of system transformation progress at www. enablinggoodlives.co.nz

Top New Zealand artists create stunning works of art in support of Kiwi families caring for children with disabilities.

Coming in 2018

Mark Benjamin is Chief Executive of SAMS (Standards and Monitoring Services) and on the Enabling Good Lives (EGL) nation leadership team.

Parent to Parent December 2017

Opinion

Story continues with life-changing decision In September 2016, William Murray’s mum Denise Ives wrote an article for this magazine about how her autistic son (then 12) was suddenly leaving the house and interacting with people – because of Pokēmon GO! During the photo shoot for the article he ‘clicked’ with photographer Michael Smith, resulting in more trips out and an enthusiasm for something other than computer games. In the December 2016 magazine his story continued – Michael had become a mentor and William’s photography had grown into a passion he had a natural affinity for. We continue William’s story as he makes a decision that will alter the course of his life.

By DENISE IVES

t the time of the first article, it had only been a year or so since William was diagnosed with Autism Spectrum Disorder and anxiety. In spite of these massive leaps in independence, he was still showing signs of depression and had episodes of mild (but still scary) self-harm. Then somewhere around the end of 2016, he told us he felt that he was really a girl, and had the wrong body. Wow! We didn’t really know much about gender dysphoria and, to start with, didn’t even know whether what ‘she’ was telling us was real. It’s such an unexpected thing to hear – it’s not like you plan for these things when your child is born. We weren’t against her living as a girl at all, we just didn’t know whether this was real, or a way for people with autism to try to fit into a world they already struggle with. Apparently, the incidence of gender dysphoria is higher in the autistic community, and the more we read and researched, we started to think that perhaps there had been indications in the past we had dismissed.

Parent to Parent December 2017

As many of you know, when your child is living with more than one diagnosis or situation, it can be hard to know where one ends and another starts; so much overlaps. We discussed things with our paediatrician and GP, and decided to follow our child’s lead. This resulted in William changing his name to Angela and asking to be referred to with female pronouns. We often got it wrong to start with, and in moments of high stress I still revert back to William occasionally. Having had a friend many years ago who transitioned to female as an adult, we were very aware that going through puberty as the gender that feels wrong for you is incredibly disturbing. Seeing the male body (you already don’t like) betray you even more by growing facial and body hair, mature genitals, an Adam’s apple and incontrollable voice change – many of these changes are irreversible. Because it was already clear Angela was in the early stages of puberty, we were keen to see what could be done so she didn’t have to go through the mental distress. We researched and found a private support and information

“So, is Angela happier as Angela than she was as William? Well, yes, I believe she is.”

group for Kiwi parents of transgender children on Facebook (isn’t everything on Facebook these days?). Through our GP we were referred to a paediatric endocrinologist and the Child & Family Mental Health Service. Both agreed Angela was suffering from gender dysphoria and understood very well what was meant by that. They said that she could start puberty blockers (pretty much 100% reversible) to prevent facial hair growth, voice breaking, etc. If she decides later that she would rather continue as male, she can stop the medication and puberty will continue as normal. She is not old enough to start oestrogen so will not develop any female physical characteristics. Having support from other parents in the Facebook group has been amazing! Being able to talk to other people who are experiencing these things really helps. A huge proportion of them have children on the spectrum, and

quite a few are home-schooling too. There’s a whole community of families just like mine out there – we are not alone. In Dunedin there is a group called Alphabet Soup run in collaboration with OUSA Queer Support. It is a confidential place for young LGBTQ* and questioning Dunedinites to connect and find support. It is wonderful and runs a weekly get-together for 12 to 18-year-olds. It’s very accepting and open, and they have been wonderful to Angela and I. So, is Angela happier as Angela than she was as William? Well, yes, I believe she is. Of course, she still finds some things tricky – social/people “stuff” has always been tricky for her and probably always will be. But, she seems to handle things better; she enjoys being a girl. Is it real? Is she really a girl in her brain and heart, born with the wrong body? I don’t know. What I do believe ’though, is that her happiness and desire to live in this world is more Parent to Parent December 2017

important than pretty much anything. If she feels that she was born with the wrong body, and that being identified as female is the right thing for her, who are we to deny her that? It does no harm to anyone, and makes her feel right in the world. Angela believes this is right for her. She has a complete phobia of needles, but in order to have puberty blockers she must have three-monthly blood tests, and the blocker is an implant via a quite large needle into her belly – also every three months. Her distress leading up to the first blood test and implant was very real – torn between her fear of needles and her desperate need to be who she felt she was. I know this can be a really tricky subject for some people, but all Angela’s friends have been very blasé about it and accepted it without question. Everyone – relatives, close friends and distant acquaintances – are accepting and supportive. Perhaps that’s because of how we approach the

subject, or maybe we only know great people, but either way it’s been easy to tell others. Some ask questions, others don’t. Alphabet Soup: www.facebook.com/pg/ alphabetsoupdunedin/about/ Do you know the difference between gender identity and sexuality? The Human Rights Campaign website has some easy-to-understand definitions: https://www.hrc. org/resources/sexual-orientation-and-gender-identityterminology-and-definitions

“Angela believes this is right for her.” * LGBTQ is an acronym to include all forms of sex, sexuality and gender diversity such as intersex, transgender, genderqueer, asexual, fa’afafine, takatapui, lesbian, bisexual and gay.

Denise Ives has a background in teaching adults to use computers, IT project management. She has a Diploma in Breastfeeding Counselling and took a certificate in teacher aiding shortly after arriving in NZ, working as a teacher aide at a primary school. She is a full-time home-educating mum to Angela, and also has a 23-year-old son and two-year-old granddaughter. Denise founded the charity The Breast Room in Dunedin, which provides free one-toone counselling and support for breastfeeding mums. To contact Denise email denise.ives@gmail.com

Parent to Parent December 2017

Getting started with those difficult conversations By ANNETTE MILLIGAN

t’s such an odd thing … in many ways our society is so much more open about topics which used to be kept firmly closed, and on the other, many of us still find it difficult to get talking about them. It wasn’t that long ago that the concept of a consensual, loving relationship for someone with a disability was unheard of. Some of us are old enough to remember those days when intimate relationships were actively discouraged, or even thwarted by the parents and other carers. Indeed, that still happens today. But times have changed. We have moved from a world in which people with disabilities were kept separate from when they were young, to one of inclusiveness – where everyone has the right to be included in the same aspects of life as everybody else. It’s having the right to an inclusive education, the right to reside in the community and not in some walled-off part of the world, the right to have a meaningful life (not just being active and occupied), and the right to have intimate relationships. Like every other part of life, some families find this an easy concept to absorb – others not so much. Families of those with disabilities are often protective, as we would expect them to be. In many ways, these families have often had to be more protective than the parents of neuro-typical or able-bodied children, with many amazing parents having waged some epic battles to get the care their children need. It is no wonder they are so protective! As a child grows into adolescence, it is difficult for any parent to slowly let go, and let their child grow into adulthood with all the terrors that can bring for parents. It is even more so for parents of children with disabilities. But children do mature and grow – at their own unique pace, which may not be a perfect match for their biological maturity. And there will be variability of interest – some

Opinion

people are really interested in sex and sexuality – others not so much. The same is true for those with disabilities. What is important is to support your child to safely mature and grow. That means they need to know what to expect and what to do. Girls should know about periods before they have their first one – which can be as early as age nine or 10. Boys need to know about erections and wet dreams by the time they are 10 or 11. It’s worth remembering that most children will have this information by those ages even if their parents haven’t taught them, because the peer group remains as the prime source of sexuality education for Kiwi kids. But for children with disabilities, intellectual and physical, they are less likely to get this informal ‘education’ because there tends to be more adult supervision in their lives attending to their needs. We cannot assume they know – we have to make sure. There are some great resources to help you get started. Look for some of those terrific books; How a baby is made is an oldie (1975) but a goodie – it explains intercourse, pregnancy and birth in clear language and illustrations. Annette Milligan is a Registered Nurse and sexuality nurse and educator based in Nelson. She is managing director of Health Click which specialises in resources for parents, educators, therapists and caregivers to teach young people and those with disabilities about puberty changes, personal hygiene and relationships.

Parent to Parent offers free information on:

• Social stories • Puberty and adolescence and the changes expected • Visuals to help remind/promote hygiene and self-care • Articles on emotions and behaviour • Autism advice on emotional regulation, relationships,

marriage, written by people on the autism spectrum

• Masturbation, etc • Teaching public/private behaviour, keeping yourself safe and online safety

Parent to Parent December 2017

Research

Sexuality, gender and autism Sexual orientation and autism

•

In examining studies and case-reports the major emerging themes were that non-heterosexual orientations such as lesbian, gay, bisexual, transgender, questioning and asexual (LGBTQA) orientations are high among those with autism.

•

Women with autism have higher rates of gender dysphoria, and lower degrees of heterosexuality when compared to both the TD population and males with autism.

•

Individuals with autism were more likely to report gender non-conforming identities than TD individuals.

Sexual orientation refers to a person’s established patterns of overall attraction to another person, including emotional, romantic, sexual, and behavioural attractions – regardless of whether this pattern results in sexual behaviour. •

Research in the past few decades established sexual orientation on a continuum from entirely heterosexual, bisexual, and homosexual, to asexual (without sexual feelings or associations).

•

Sexual identity develops in adolescence in the context of puberty, overall bodily changes and societal expectations about choice of partners.

•

For most adolescents with autism, this development may occur later than that of their typically developing (TD) peers, and may include higher percentages of asexuality.

•

In most aspects of sexual development, literature identifies similar desires and fantasies for people with autism compared to their TD peers.

•

Same-sex attraction among adolescents is reported 5-10%, with similar percentages in TD adults.

•

The literature on the sexuality of children and adolescents with developmental disabilities cautions to not mistakenly regard people with disabilities as childlike, asexual or as inappropriately sexual.

Research •

Overall, findings on the sexual orientation of people with autism suggest a higher prevalence of nonheterosexual orientations in those with autism compared to the TD population. Parent to Parent December 2017

Rita George did a study titled A minority within a minority – sexually diverse and gender diverse individuals with autism. Participants were 310 high-functioning people with autism (90M, 219F and 1 intersex) and 261 TD peers (103M, 158F). •

70% of females indicated non-heterosexual orientation which included homosexual, bisexual, pansexual, asexual and other; 30 times more than the TD population.

•

Over 52% of males indicated non-heterosexual orientation.

•

Males with autism were the group that most identified as homosexual with approximately 14% compared to 9% females with autism, 4% TD males and 6% TD females.

•

Individuals with autism reported 135 times more gender dysphoria than TD individuals.

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Rates of transgenderism were 20-40 times more than the TD population.

Individuals with autism were more likely to report gender non-conforming identities than typical developing individuals.

Relationships between gender dysphoria, sexual orientation and autism.

•

Lesser emotional intuition such as difficulties with theory of mind and weak central coherence

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There was a positive correlation between autistic traits and gender dysphoria.

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Cognitive inflexibility around gender roles.

The gender non-conforming group reported increased non-heterosexuality.

•

Need for awareness of sexual and gender diversity in autism and unique health concerns in minority populations

•

Recommendations

Mental health •

Overall there are increased mental health concerns for people with autism.

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Increased understanding of gender variance in presentation, diagnosis and perhaps aetiology

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Belonging to a non-heterosexual orientation and a gender non-conforming identity increased mental health concerns among individuals with autism.

•

Developmentally tailored sex education programmes with specific focus on gender and sexual identity

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Increase awareness, support and respect for this group

Qualitative findings (109 individuals with autism (41M, 68F) and 70 TD individuals (36M, 34F) were given 29 open-ended questions. Results indicated:

•

Change focus to lasting personal comfort, selffulfilment, clarity and confidence, not pathology and confusion

•

Those with autism presented a more androgynous selfconcept but were cognisant of ‘biological gender’

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Dissatisfaction with gender-roles

References

•

Liberal attitudes towards sex of romantic partners

•

Alternative sexual identity and gender identity labels.

George, R. (2016). Sexual orientation and gender identity in high functioning individuals with autism spectrum disorder. (Doctoral dissertation) retrieved from: http://dro.deakin.edu.au/eserv/ DU:30089386/george-sexualorientation-2016A.pdf

Reasons may include: •

Hormonal explanations; increased testosterone – Extreme Male Brain theory

•

Hyper-masculinisation in autism

•

Less bothered by social norms

Gilmour, L., Schalomon, M., & Smith, V. (2012) Sexuality in a community based sample of adults with autism spectrum disorder. Research in Autism Spectrum Disorder, 6(1), 313-318 Murphy, N. A., Elias, E.R. (2006). Sexuality of children and adolescents with developmental disabilities. Paediatrics, 118 (1), 398-403

Parent to Parent December 2017

News 80% of Kiwis support minimum standards for disability access

national poll conducted by UMR, commissioned and released on September 5 by the Access Alliance, shows the majority of New Zealanders want action on improving accessibility for people with disabilities. “It shows Kiwis want the government to pass legislation breaking down the barriers that stop everyone having access to all parts of society,” spokesperson Dianne Rogers said. The poll of 750 people nationwide was conducted July19-25. It asked: On a scale of 1 to 5 where 1 means strongly agree and 5 means strongly disagree, how strongly do you agree or disagree that the law should specify minimum standards for disability access? 80% of respondents agreed to some degree, with 6% disagreeing. “Minimum standards for access to things like buildings and transport, as well as information and services are crucial in allowing Kiwis with disabilities into the workforce and to fully take part in society,” said Ms Rogers. The poll also asked about the prevalence of accessibility issues in New Zealand.

•

16% said they experienced difficulty getting on and off public transport

•

16% said they experienced difficulty getting in and out of buildings

•

4% said they had experienced at least one of the above.

Disability Minister Carmel Sepuloni has committed to increase access for New Zealanders with a disability, and the Labour Party made pre-election commitments to introduce enforceable and mandatory accessibility standards with a view to passing the Accessibility for New Zealanders Act into law. “There are 14,000 New Zealanders with disabilities who are ready and able to work, yet struggle to gain employment,” said Ms Rogers. “An Accessibility Act would enforce minimum standards which would make sure jobs and workplaces are accessible, opening the door to disabled Kiwis having the same opportunities and choices as everyone else.

•

31% of people identified as currently having, or having had, an injury, health condition or other disability.

“Minimum standards for access to things like buildings and transport, as well as information and services, are crucial in allowing Kiwis with disabilities into the workforce and to fully take part in society.”

•

17% said they experienced having information not be available in a format that they could use, as a result of their disability

The legislation will help businesses and organisations know what they need to do to enable people with disabilities to access their services, buildings, and products.

Data crucial to disability rights

ncluding questions on disability in the 2018 Census has been welcomed by the Human Rights Commission.

“Collecting data on disability is critical if we are to work out what we can do to support disabled New Zealanders to lead meaningful lives,” said Disability Rights Commissioner Paula Tesoriero. “Understanding how disabled people participate in all aspects of life covered by the census – such as employment and education – compared to non-disabled people, is crucial to achieving equality. Data collection must be a key part of

Parent to Parent December 2017

our disability framework and will be a focus in my time as Commissioner.” Other sources of national disability data include the 2013 Disability Survey, The New Zealand Health Survey and The New Zealand Mental Health Survey. The New Zealand General Social Survey and the Household Labour Force Survey recently included the Washington Group Short Set of Questions on Disability. “The United Nations Committee on the Rights of Persons with Disabilities has previously encouraged our Government to collect better data about disabled New Zealanders and this is a welcome development.”

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" "We are like a snowflake... all different in our own beautiful way"

Making the most of meetings By CAROLYN JURY BAppSocSci (Counselling) Parent to Parent Support and Information Coordinator

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If you feel yourself becoming emotional, ask for a short break, have a glass of water or take a deep breath to calm yourself.

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Ask your support person to take notes, particularly around agreed outcomes, timeframes and who is responsible.

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If you are unsure about something, ask for clarification.

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Meetings are generally more productive if solutions are offered as well as stating issues and problems.

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If issues are raised which are not on the agenda, and you do not feel well prepared to discuss them, you are entitled to ask for another meeting to be scheduled to discuss those points.

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Meetings at school can often seem to be negative if they are addressing learning or behavioural issues. Acknowledge what steps have been taken to address issues so far and thank the people concerned. This makes people more receptive to continuing to support your child.

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Set a time and date for the next meeting before the meeting ends and ask for a copy of the official minutes to be sent to you.

s the parent or caregiver of a child with a disability or a serious medical condition, you will attend a lot of meetings – with specialists, therapists, educators and a mind-blowing array of service providers. Meetings are intended to be positive and helpful, however, they can be stressful and frustrating. Here are a few general tips to allow you to tackle any meeting.

Before •

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Know when and where the meeting will be held. Unless it is an emergency situation, you are entitled to adequate notice. Understand the purpose of the meeting and find out who will be present. If this is a follow-up meeting, re-read previous minutes/notes beforehand. If possible, arrange to take a support person or advocate with you. Having someone supportive there will give you confidence and you will be able to clarify what was said after the meeting. Have realistic expectations about possible outcomes. Any decisions should be made collaboratively and be mindful of your child’s best interests. Make notes beforehand so you remember what you want to say or questions you want to ask. Our memory often doesn’t function well in stressful situations! Approach the meeting with an open mind and be willing to negotiate to get the best outcome for your child. The best results come from a spirit of partnership and teamwork.

After •

Debrief with your support person.

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Write up your meeting notes and keep them in a safe place.

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Check the official minutes are accurate when you receive your copy. If you don’t agree that they are a true record of the meeting, you can ask for them to be amended.

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If the meeting failed to have a positive outcome, or no decision was reached, decide what your next step will be, for example a formal complaint or professional advocacy.

During • •

Be respectful in your communication at all times. This should be mutual and you should feel valued and heard. Although sometimes very difficult, try to control your emotions. Your points will be heard more clearly if you can ‘stick to the facts’ rather than becoming overly emotional. Meetings about your child can generate strong feelings and this can lead to unhelpful interactions from both sides.

Finally, remember that the primary purpose of any meeting is to benefit your child. Hold this awareness during meetings and your thoughts, speech and actions will reflect this purpose, making a positive outcome more likely. Parent to Parent December 2017

Welcome New Faces

Sukhpreet (Suki) Kaur – Auckland Regional Coordinator

Suki believes the person comes before their disability, and that individuals with disabilities have the right to make their own choices and be part of an active community. She is keen to support families in Auckland by providing choices and resources to meet their goals. Suki is originally from Singapore, moving to Auckland in 2013 with her husband and two children. She holds a Bachelor’s Degree in Communication and a Graduate diploma in Counselling. She previously worked with children with autism one-on-one and in schools in the field of Applied Behaviour Analysis. She then moved on to Shadow

Specialist Teacher with the German Singapore School, and trainer/counsellor with Restorative Practices, Singapore, where she promoted student development and organised/conducted programmes for at-risk youths and student leaders. Having practiced Kundalini yoga, Suki became a certified kids’ yoga teacher in 2012. Suki is excited to be part of the Parent to Parent team as a Regional Coordinator and is hoping be the face of Parent to Parent in South Auckland. In her free time, she enjoys outdoor adventures, travelling and spending time with her kids. She strives to live life simply, enjoying the small things.

Joanne Evans – Auckland Regional Coordinator Joanne’s passion in life is to raise awareness and acceptance for the special needs community, but it certainly didn’t start out that way. She’s originally from Cardiff, the capital of Wales. Having a son in 2001 with disabilities parachuted her into an arena she never imagined. In 1995 with her husband, she left Wales in search of adventure – with two suitcases and an iron! She has since lived, worked and parented in Hong Kong, Sydney, Melbourne, Scotland, Dubai and now Auckland. Predominantly she has worked in investment banking and latterly turned her skill set towards publishing and journalism. Her experience navigating the special needs system in five different countries has

Parent to Parent December 2017

given her a solid foundation to help others who find themselves in the same position. She is an active Board member for her son’s special needs school, and also enjoys regularly presenting to student nurses at the University of Auckland on how to interact with children and young adults who have disabilities. Her drive to problem solve, to effectively communicate and to make a positive difference to the lives of others means that she is absolutely thrilled to have joined Parent to Parent. “After just a week into the role with Parent to Parent, I knew this was the job for me. After many years in the corporate world, I am finally doing something that has a true and positive affect on people’s lives. That’s job satisfaction 101, right there.”.

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Need something? Use our directory to connect with services that support parents, carers and people with disabilities and health impairments.

Enrich+

Enrich+ - Spectrum Energy

Working with people with disabilities to have ‘a life like any other’ by focussing on skill development that enables a person to live their life, in the community of their choice. Transition from school services, coaching and mentoring services, support for living independently, 1:1 support and group activities available, as well as opportunities for work experience and support to find employment.

Supporting children, teenagers and adults with autism to further develop their social skills, communication skills and life skills through facilitated groups and 1:1 mentoring services. Supported living services also available, as well as support and training available to schools, workplaces, whānau and friends of those interacting with those on the autism spectrum.

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NZ Foundation Conductive Education

Altogether Autism

Conductive Education provides rehabilitation and education programmes for people from birth through to adulthood who have developmental delays or disabilities. Our teams of specialists based in our early childhood, school and adult centres focus on all areas - encouraging skill development towards independence. Call your local Conductive Education provider for more information.

Altogether Autism is a free, nationwide autism spectrum information and advisory service. We individually research your request for information and supply to autistic people, parents, educators, support workers, GPs, police and any other professional working with adults or children on the autism spectrum.

Phone 0277169323 Email nzfce@cecanterbury.org Website www.conductive-education.org.nz

Phone 0800 273 463 Email info@altogetherautism.org.nz Website www.altogetherautism.org.nz

Maximising the ability in disability

MAXIMISING THE ABILITY IN DISABILITY

Informing, empowering and connecting through knowledge and experience

Care Matters

Arthritis New Zealand

Care Matters runs nationwide workshops/learning opportunities tailored to the needs of your community, to enable carers access to knowledge, support and advocacy. It also provides a wealth of resources on its website. An 0800 number connects callers to its courses and directs carers to potential respite care..

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Parent to Parent December 2017

x Parent to Parent wishes you a

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