Parent to Parent Magazine September 2018 by Parent to Parent NZ

NEW ZEALAND’S FAMILY DISABILITY MAGAZINE

September 2018

In Marama’s shoes Battle for Hope

Strength in advocacy

Kia ora readers...

ell that’s another winter out of the way (whew!). Colder months were traditionally a time to hunker down at home and recharge our batteries.

In this 24/7 age we don’t stop for winter – instead emerging out the other side stressed, run down and totally over the rain. But when tui come out to feast on kowhai flowers, you know it’s time to soak in some rays and get outdoors to release endorphins! Check out why exercise benefits mood in this issue. We welcome new CE Jane Bawden Blooms of kowhai for and other fresh staff faces. Jane started Parent to Parent’s office tui Tama. on September 5 and has worked as a lawyer in the health and disability sectors for over 20 years, providing advice and undertaking governance roles. Jane has her eye firmly on ensuring that the

Parent to Parent community is supported to access all the opportunities the EGL roll-out and systems transformation will offer. Mana Whaikaha is the new name for disability support system transformation. To keep up to date with Mana Whaikaha, its website will be live from October 1, www.manawhaikaha. co.nz. I invite you to take part in our readership survey (see below) and be in to win a $100 Prezzy Card – just in time for Christmas! The 2016 survey provided excellent feedback from 351 readers who told us we were giving you what you wanted to read, and evolving along the right track to become New Zealand’s leading cross-disability magazine. We’ll publish the survey results and the winner in the December issue.

Sue Pairaudeau, Editor

WIN!

WIN! Be in to win a $100 Prezzy card just by answering our magazine survey questions. Run by SurveyMonkey, it is on our website’s magazines page, where you can also view past issues. Alternatively, contact us to have it emailed or posted to you. The survey runs for two months until the draw on Friday November 30.

Editor: Sue Pairaudeau Editorial: Staff writers, guest contributors, and freelancers Monica Holt and Clare Chapman Advertising: Carey McLaughlin Graphic design: Te Reo Hughes Cover: Conductive Education Canterbury conductor Dora assisting Savannah with balance and coordination on the rock-it board. Printing: Annex Group 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. Parent to Parent NZ cannot endorse services or products in paid advertisements.

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

CONTENTS 2 4

A run in Maramaâ&#x20AC;&#x2122;s shoes Opinion:

Anxiety workshops Opinion:

Minister for Disability Issues Carmel Sepuloni

Gold haul for Argentina

Mumâ&#x20AC;&#x2122;s battle for Hope

Wheely Wild

Self-awareness for teen

Disability Rights Commissioner Paula Tesoriero

Books

Strength in advocacy

Competition & services

Iona Young

Health & wellbeing

Bus card petition

Exercise improves your mood

New faces

8 10 12 14 15

Opinion:

Sensory Processing Disorder

Opinion: Michael Pulman

Dr Anthea Skinner

Parent to Parent September 2018

Support Parents

A run in Marama’s shoes By MONICA HOLT Freelance writer

aking up running at 50 changed Marama Christie’s life – and inspired her brain-injured daughter Tui, to join in too.

It was a chance comment by her husband Nupi Martin three years ago while driving in Rotorua that marked the start of Marama’s running journey. “We were driving and saw this sign. It was the 50th Rotorua Marathon, and the hubby said, ‘oh look, you should do it’.” And the seed was sown. She joined Rotorua running groups, Lake City Athletics and then Jogging the Powerpoles. The rest is history. Marama, 53, has now run several half marathons, full marathons (including three Rotorua marathons); and ultra-marathon distances, including the 62km Tarawera Ultramarathon this year. Not bad for someone who couldn’t run to the letter box. She speaks of the ‘runner’s high’, and how long, slow training runs allowed ‘me time’. Previous to running, the family’s world changed in 2010 when Tui, then nearly 18, was involved in a serious car crash which claimed the life of her friend on the outskirts of Rotorua. Tui suffered a traumatic brain injury (TBI) and had part of her skull removed. “We know how blessed we are to still have her,” Marama

Parent to Parent September 2018

says. “And despite some cognitive issues where people don’t know how to communicate with her sometimes and her right hand being paralysed and her walk not being so ‘lady like’ these days, she has made new friends, and also loves making and giving gifts to people. “She is still the same person with that heart of gold, and we are so grateful to have her. She inspires me and has taught me what true strength is.” Today, eight years on from the accident, Tui is 26, leads a full life and is living with her parents in Rotorua. “She didn’t really get to have those golden years of growing up, transitioning and becoming her own self, really. She is still going through a bit of that now.” Tui represented Rotorua in swimming at the Special Olympics last year in Wellington and goes to the gym often. She walks long distances and can ring her own taxi when needed. She completed the 5km in the Rotorua Marathon with the Achilles International charity two years ago, and again with Special Olympics this year. Marama recalls how events came about. She was meeting with family and they were coming up with their own plan for the marathon – and Tui kept calling out to her. "I went into her room and she was holding her own sign-up sheet. I just about cried that day.” Tui volunteers on a trolley run a few hours a week at Rotorua Hospital, has a paid cleaning job two hours a week at Wood Masters, and attends programmes at Te Aratu Trust and Step Ahead.

Support Parents Marama knows the value of whānau and is grateful they can still do things as a family. “Tui is lucky she has siblings she can go to, because she thinks of me as a Sergeant Major sometimes!”

Marama is involved with Parent to Parent as a Support Parent and recently attended a Parent to Parent ‘Magic Mums’ weekend. “It was about giving us mums with special children a weekend away; to be pampered and not have to think about their children or families. It was like a mini holiday and for some the first time away from their families. It was a great weekend of laughter and sharing of one another’s stories.” Marama knows the value of whānau and is grateful they can still do things as a family. “Tui is lucky she has siblings she can go to, because she thinks of me as a Sergeant Major sometimes!” Marama and her husband fulfilled a dream by moving to Brisbane in 2012. “Tui was sick of us talking about going to Oz and said ‘go’. “My husband and I moved the day before he turned 50. We thought, what a great way to celebrate turning half a century by moving to another country. We were going to set up for them to come over. We lasted six months. “Sure there was lots of opportunity, good money to be earned, however, we missed the kids too much.”

Marama and daughters, Tui second from right.

Marama returned to Rotorua and her previous employer Peterson Sawmills, an exporting company where she is now purchasing officer. It was through her boss Kerris Browne (a NZ Athletics coach and founder of Jogging the Powerpoles) that Marama got into running. Marama says she has met some fantastic people on her journey and they have become her running family. She has also seen and run some amazing places; sights you would not normally see. She says in the beginning she would lose sleep over the thought of a 5km run, but gradually the runs got longer and longer. “The Tarawera 62 kilometre Ultramarathon was sublime.” While winter has been a little quiet on the running front, Marama has a few events scheduled for later in the year: The Kawerau ‘King of the Mountain’ (7km); ¼ Iron Maori in Napier; Tois Challenge in Whakatane (18km) and the Taupo Half Ironman team event (21km run). Recently she took on a new activity she is finding challenging; learning to swim. She says “the brain is just not happening!” The past two years she has done the ¼ Iron Maori triathlon event as a team with whānau. “This year I am hoping to do the swimming portion. “Tui was a talented rower and a good all-rounder at sports prior to the accident. She also swims better than me, and I think if she can do it then so can I. She is my inspiration. “I don’t go out to break any records. So long as I start and finish, that is my main goal. I get a natural high. “Just being out there in God’s Own with like-minded people – everyone has a story, and this is mine.”

Tui in marathon mode.

Parent to Parent September 2018

Opinion

Access for all By Hon CARMEL SEPULONI Minister for Social Development, Minister for Disability Issues, Associate Minister for Pacific Peoples, Associate Minister for Arts, Culture and Heritage

ccessibility for all New Zealanders has been a strong theme in the work I have been doing lately. As the Minister for Disability Issues and Minister for Social Development, ensuring people have access to information, services and physical spaces is essential. Access is also the foundation for improving wellbeing for people, whÄ nau and communities, and working toward a more inclusive New Zealand. Over the past few months I have been out in the regions holding forums with local disability communities and meeting with disability groups and organisations. I have also been meeting regularly with a range of other disability

Parent to Parent September 2018

groups while Iâ&#x20AC;&#x2122;m down in Wellington at Parliament. In order for all New Zealanders to be able to participate fully in their communities, we need to improve accessibility. And when we say we want accessibility, we are not talking about someone being able to simply access a building, a service or information, but that they can do so with ease and dignity. I want to live in a country where we are all able to enter a building by the same route, where we can all easily access the information we need and where we can all communicate with each other. For our children, having access to the right supports and feeling like a part of the community is so important. From having playgrounds that account for a wide range

Opinion

"I want to live in a country where we are all able to enter a building by the same route, where we can all easily access the information we need and where we can all communicate with each other."

of accessibility needs, to ensuring our education system is inclusive and supporting our young people to thrive. Recently I was presented with a book of stories from people who had experienced accessibility barriers by the Access Alliance at Parliament. A group of about 60 people, ranging in age from young people to over 65 with incredibly diverse backgrounds came together to be a part of this event. This group of people showed their passion and dedication to a more accessible New Zealand, and I am grateful to have been a part of it. This book highlighted the range of experiences people had. Carl told the story of the barriers he overcame to go to the pharmacy and small changes that could make a big difference on his journey, such as having more zebra crossings with lights and requiring ATMs to have buttons, alongside touchscreens. Amy, who I have met previously, described the physical restrictions she encountered as a university lecturer. Areas that were essential to her in the workplace to do her job, such as podium staged areas were often not accessible without the assistance of someone else. But it is not only through this book that I’ve been presented with peoples’ lived experiences of accessibility barriers. I hear these stories often and they are a constant reminder that we can and must do better. I know that so many people live every day in a world that puts restrictions on what and where they can access.

Recently I had a very brief glimpse into this when I, along with my colleague Minister Lees-Galloway, were in wheelchairs promoting World Spinal Cord Injury Day. We faced some criticism for this, and had expected that there would be a mixed reception. However Minister Lees-Galloway and I took up the challenge from New Zealand Spinal Trust to support their efforts to raise awareness of pressure injuries in New Zealand. I learned a lot during this process about things like the importance of wider doorways, and the impact a sloped floor has. This experience will add value to the work I do as a Minister and my commitment to improving accessibility in all areas of life, including Parliament. Earlier this year I was presented with a petition to put accessibility into a legislative form. Accessibility is already enforced in law in some other countries, and I am looking into the role legislation plays in these countries, and how that might apply here in New Zealand. Any changes that we consider will be done so alongside the disabled community, reflecting our commitment to ‘nothing about us, without us’. There are some good strides being taken to improve accessibility and ensure we have a physical, social and digital environment that supports the needs of all New Zealanders, however, there is still so much to do. This Government is focused on wellbeing and making New Zealand the best place to raise a child and to be a child. That’s why we need to continue to make positive changes so disabled children, young people and adults can live their lives to their fullest potential.

Parent to Parent September 2018

Sport

Megan Chui, sixth from right.

Golden run in Argentina By MONICA HOLT Freelance writer

or Megan Chui it was her first overseas trip – and the experience of a lifetime. The 32-year old was a member of the New Zealand team which returned from the International Taekwondo Federation World Championships in Argentina in August with a haul of medals. Megan, who won two golds and one silver, was still buzzing when she spoke to Parent to Parent shortly after arriving home. “I enjoyed it. It helps me to build my confidence, and meet (people from) different countries, and it helps a lot for special needs and mainstream people as well.” All members of the 18-strong team – both mixed and ablebodied athletes – hail from Hawke’s Bay and got there thanks to a massive fundraising effort in their local community. There were 11 special needs competitors, including Megan, and seven mainstream athletes. Megan lives in Taradale and has the rare Maple Syrup Urine Disorder (MSUD) – an inherited metabolic disorder affecting the body’s ability to process protein. As a baby she needed 24-hour care and couldn’t walk; she spent a lot of time in hospital with the condition, which causes brain damage. Megan, who started the martial art just three years, took her sister Tessa as a support person for the two-week trip.

Parent to Parent September 2018

She says there were many things to adjust to, like the long flight, the time difference and preparing to go in front of an audience. “It was a really good experience for me to go away with my team. I was nervous in the beginning. We came back with 43 medals and competed against different countries.” The team is led by head coach Ben Evans, who teaches Taekwondo throughout Hawke’s Bay. He was thrilled with how well the special needs athletes did. Other members of the team live with various conditions, including Down syndrome, autism and developmental delay. “It is the challenge to make them fitter and stronger and to be able to provide them with these opportunities that they wouldn’t usually get. There are a whole lot of benefits to teaching these guys and seeing them achieve the levels they do.” Ben, who runs the New Zealand ITF programme in this country, would like to thank the many Hawke’s Bay businesses and trusts who helped the team reach their $100,000+ fundraising total. After the thrill of Argentina, Megan has her sights firmly on the next challenge. “In 2020 we are going to Russia.”

News

Wild event for speed freaks on wheels

arent to Parent’s 2019 fundraiser will attract people with the need for speed for a day of Wheely Wild at Hampton Downs.

Turn up to race or watch others let rip on the flat club circuit in wheelchairs, power chairs, mobility scooters, disability tricycles, hand cycles, rollerblades, cycles, unicycles and skateboards. “We're also hoping for categories such as VIPs on wheels, the Roller Blacks wheelchair basketball team, demos of stunt cars, and rides in tuk-tuks and motorcycle side cars,” says Parent to Parent spokesperson and event organiser Sue Pairaudeau. As Parent to Parent supports families of people with disabilities, Wheely Wild has racing for all ages and abilities, with the emphasis on completing rather than competing.

“However, we’re expecting natural wheelchair-users will leave those who are not for dust!” Entertainment on the prize-giving stage, food carts, raffles and spot prizes will add to the family fun. Prizes so far include driving a V8 muscle car, a fast dash passenger ride in a Lamborghini supercar and high-speed taxi, V8 hot laps and single or tandem go-kart blasts – all courtesy of Hampton Downs. Parent to Parent is grateful for support and prize sponsorship from Hampton Downs, and Auckland Superloos for extra disability toilets. To register interest, receive event updates or discuss sponsorship options, contact Communications & Business Development Manager Sue Pairaudeau suep@parent2parent.org.nz or DD 07 834 3764.

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Opinion

Creating a circle of care around disabled people and their families By PAULA TESORIERO MNZM Disability Rights Commissioner

s parents, we want to provide the very best for our children. We are expected to have the answers; to provide support, comfort and opportunity. For parents of disabled children, it is vital to be able to access universal parenting supports, but also have easy access to specialist information, support and services.

Often described as an ‘invisible’ disability, FASD does not always present physical symptoms, but it does impact brain function. This means that deficits in decision-making, planning and organising, memory, impulsivity, heightened sensitivities and emotions are often mistakenly attributed to behavioural issues. Despite this, I have heard stories of people being turned down for services and supports such as respite care because they do not meet the Ministry of Health disability support services eligibility criteria.

In the last edition, Minister for Disability Issues Carmel Sepuloni acknowledged that for disabled people and their families there are additional costs, for example in transport, housing and modifications. The Minister also acknowledged the impact of family support on employment options.

There should be no debate: FASD is a disability. FASD falls into both the definition of disability in the Disability Convention and the New Zealand Human Rights Act. FASD can be described as an umbrella term for conditions or impairments which in interaction with various barriers, affect peoples’ full and effective participation in society. This means people with FASD should be afforded access to all disability support services. They will require a range of supports throughout their lifetime to build strategies that help with organisation and planning, memory, speech and language skills and social impulsivity to fully participate in their community.

We don’t know the true costs of disability because they haven’t been measured, however we can see the effect of the additional demands on families. That is why it is so important there are no barriers for parents with a disabled child to access supports. Last month I took part in a radio documentary on RNZ Insight about fetal alcohol spectrum disorder (FASD) in New Zealand. FASD refers to a range of physical and neurodevelopmental impairments experienced by people who were exposed to alcohol during pregnancy. It is estimated that 600 babies a year are born with FASD, however experts suggest the real figure is higher.

Parent to Parent September 2018

How we define or discuss FASD has a profound impact on children, whānau and society. We need to provide individuals and families with the supports at the right time and in the right way. Services and supports need to evolve as young people age, and to respond to individual circumstances. We have an obligation to provide what is needed for all people to fully

Opinion

participate in community – that means all disabled people and their whānau. I don’t want to spend time debating what is a disability and what is not when the people it affects are living with these barriers every day. My hope and my efforts are for a society that removes the barriers, one that values and includes disabled people and their whānau. September is FASD awareness month or Red Shoes Rock! month. Red Shoes Rock! is about Kiwis stepping out in red shoes every day to build awareness of FASD. You can find out more at the Red Shoes Rock! website: https://fasd. actionpoint.org.nz/.

Disabled women face discrimination and barriers on a daily basis. They are particularly marginalised when it comes to employment. They have lower labour force participation rates than non-disabled women as well as disabled men (Labour market statistics, 2018). Anecdotally, we also know that disabled women are much more likely to be subject to violence and abuse.

“Let’s start talking about how we can support each other in all areas of life – what are the barriers in our way stopping us from living the lives we want to lead?”

If we can each take a moment to learn something new about FASD in September, then we will be helping to create a circle of care around those living with this disability. With this increased understanding at societal level, we can help improve lives and outcomes. I also wanted to take this time to acknowledge that September 19 marks 125 years since women gained the right to vote in New Zealand. There is still a long way to go to see true equality for women in New Zealand and we need to make sure we include disabled women in all our actions to address inequalities.

Let’s start talking about how we can support each other in all areas of life – what are the barriers in our way stopping us from living the lives we want to lead? I’ll definitely be wearing my red shoes this September, but whether I’m wearing them or not, I’m always keen to start the conversation and push for everyone to live the lives they want to lead.

FASD-CAN Inc is New Zealand’s national support network for parents and caregivers of those with FASD. Please visit their web site www.fasd-can.org.nz to learn more. • Follow Paula on Facebook www.facebook.com/ PaulaTesorieroHRC/ and Twitter @paulatesoriero

Parent to Parent September 2018

People

Sense of healing being “Courage isn’t the absence of fear, it’s about feeling the fear and having the courage to get on and do it anyway.”

Strength in advocacy

ambridge mum Sarah Verran says this quote resonates with her experience of the past three years – since daughter Ruby, then 10, was diagnosed with a rare brain tumour. Family life changed completely as it transformed the once-happy, bright and healthy young girl into someone who needs 24-hour care and support to live. Sarah has cared for Ruby for three years, and it has forced a new perspective on life. With a background in IT, tourism and media, she is now focusing her energy on the social and disability sectors, particularly governance, and was recently named Emerging Director of the Year – Disability Sector Award by the Waikato branch of the Institute of Directors. “I have found strength in becoming the advocate for my daughter, to be able to speak about our experience, to challenge thinking, offer some objectivity and add value to facilitate change.” Developing her governance career is a way of achieving her objective of advocacy and change within the disability sector.

Parent to Parent September 2018

By SARAH VERRAN

e discovered it after a routine eye test as Ruby had been having headaches and, as any parents would, Corey (husband) and I thought maybe she was having problems seeing in class. Little did we know the bombshell that was about to be dropped! This tumour is slow-growing and had been present since birth – unbeknown to us. It’s hard to fathom all of this when only a week earlier you were a perfectly normal Kiwi family with two seemingly healthy children making plans for the future. After an MRI, a very speedy trip up to Starship Hospital and an eighthour operation to remove most of the tumour, Ronald McDonald House became our home for the next six months. As a parent living in hospital with your child you’re in a bubble of amazing care and support. There is very little existence outside of a million tests, doctor’s visits, medical jargon and meal times. Real life as you know it ceases to exist. You begin to forget about life in your own home, your work, your friends and even your other children, as your energy is consumed by looking after your sick child and staying strong for them. Every day we watched as our brave and strong girl, in her mask, took treatments like a trooper. We watched over the next few months as our smiley, happy and outgoing daughter changed before our eyes. Then you come home, and what a shock that is! Suddenly there is no bubble, and you realise you’ve changed. There is less patience, more anger, exhaustion, and more empathy for things you wouldn’t have thought before.

People

Sarah with daughter Ruby.

Ruby, 13, now has vision impairment and is cognitively and physically compromised. Complete loss of her pituitary gland due to the tumour and a stroke has impacted her frontal lobe, meaning many medications and injections daily to keep her alive. If you know what it is like to have a toddler, then that is the reality of my life now with a teenager in a toddler’s body. Every day is a lesson in patience for us all as she negotiates her new life. My journey through extreme mental distress as I navigated the initial diagnosis – the grief of losing the child I had while not being able to process this grief (I still have someone to care for, but no longer the daughter I had) – and the fierce advocate I find myself now, has taken me to some very dark places. I have experienced very challenging emotions, and live one day at a time just trying to juggle being the full-time earner, mother, wife, and be my best self. The shift in the partnership responsibilities with my husband has been a natural progression, and I’ve found a semi sense of healing to be the one who is the fighter. I find myself now being the doer, the one who fights to get her the best care and to co ordinate all the services we need to keep her alive and the rest of us on an even keel. But through all this we have been lucky. We found support in places we never knew existed. There have been hard lessons to learn as we discovered who is in our corner and has the staying power to support us. We have made amazing new friends, and we have each other. Every day Corey and I find the courage from somewhere to care for, support and love our daughter, knowing that Ruby will never be as she was. We find positive ways to process our grief which threatens to overflow around what we had, our hospital journey, and what is now our new normal.

Sarah Verran with her award and Life Unlimited board chair John Dobson. As part of her prize Sarah will sit on the board of Life Unlimited for a year.

Sarah Verran is a determined mother who, after a life-changing trauma three years ago moved from a corporate career into the social sector embarking on developing governance pathways, taking part in programmes like Rākau Roroa (tall trees) through Changing Minds, and communities of practice with EGL. Sarah realised that she could use her voice and knowledge of the disability sector and services to help to facilitate change.

Parent to Parent September 2018

People

When sensory input By IONA YOUNG

ensory Processing Disorder (SPD) is often misunderstood and even more often not believed. As a result, many living with it are unable to get the help they need, especially in school or work environments. This is partly why I only got my diagnosis last year at 16, and it was a massive relief to know that I wasn’t just making up my problems – it was an actual thing! As much as I wish I had this knowledge growing up, and had more help and support as a kid, I’m also proud of how well I’ve been able to develop my own understanding of myself and formulate effective coping strategies on my own. It’s also become a lot easier to cope as I’ve got older and had more control to make choices that allow for my sensory needs to be accommodated for in my daily life. SPD for me means most of my senses are highly sensitive to any sort of input, and sometimes even react as if there is pain or danger when there is none. This results in normally insignificant sensory input feeling greatly exaggerated, for example, denim feels closer to sandpaper rubbing my skin than it does to other fabrics; or painful, like how light touch can give me a sharp jolt of pain. It also feels like there's some sort of filter missing between my senses and my brain. Where most people seem able to tune certain unnecessary sensory input out, I get everything all the time. For example, if I go out for coffee with my friends, I have a hard time focusing on what they’re saying. They have no problem hearing me or each other, because all other sensory input they’re experiencing is automatically sorted in their brain, so they can focus their attention on listening to the conversation, watching each other’s body language, and enjoying their food.

Parent to Parent September 2018

People

becomes overwhelming Meanwhile my brain can’t sort sensory input by its importance and relevance. So not only do I hear and see my friends, but equally I hear the conversations of everyone else in the cafe, the baristas making coffee, the feeling of the seat I’m sitting on, the feeling of all my clothes, the smell of everything anyone’s been served.

There's also just something fundamentally different about how my body feels in a way that I’m not sure I can accurately describe. It’s like I can start to feel the disconnect that comes with a shutdown without being fully disconnected. This is the time when I really have the best chance of stopping/avoiding a shutdown or at least getting somewhere safe.

All this information is processed in my brain as having equal importance, so trying to focus on one specific thing can be incredibly difficult.

If during a shutdown, or as I’m reaching the point of shutting down, if there is some other major stressor such as a sudden and dramatic increase in sensory input, having to make decisions, or anything else to provoke anxiety, I tend to head more towards a meltdown. For me a meltdown usually involves crying a lot, very fast breathing, and erratic movement as I simultaneously try to get the proprioceptive input I need to calm down, and get away from the situation.

Between the difficulty of sorting incoming sensory input and that sensory input being bothersome or painful on its own, I often get overwhelmed and unable to cope with it all. This is what leads to meltdowns and shutdowns. A shutdown or meltdown occurs when I cannot keep up with all of the sensory input; my brain can’t process it all effectively. To me it feels sort of like I’ve disconnected with my logical brain, future planning, rational thinking, and the like, and processing the incoming sensory information is just taking up so much of my brain there's no room left to think. As I move further away from overall regulation it gets harder and harder to think and do anything. The only things I can really do at the worst points of my shutdown is maybe cry and run away, but mostly I’m just motionless and unresponsive. That means often I either have to keep enough mental capacity to get out of the situation and somewhere safe to shut down, or have someone else there to get me to what I need. There is a build-up before I get to a full-on shutdown, and as I approach over-stimulation I get kinda jittery, more agitated with minor things, tense, fidgety, and restless. I feel these for other reasons as well, but all together and stronger than usual when I’m overwhelmed and on the verge of a shutdown.

When I’m in the middle of a meltdown or shutdown a lot of seemingly helpful things actually make the situation much worse for me. Mostly, people trying to touch me or talk to me just adds sensory input and mental stress that further overwhelms me, which in turn makes it harder for me to calm myself down. However as long as I have access to the things that calm me such as headphones/music and a weighted blanket, and don’t remain in the overwhelming situation longer than I have to, I can usually avoid or at least minimise the meltdowns and shutdowns. While SPD can be difficult to understand, manage and deal with, it’s certainly possible to live well. With the right supports I’m now in my second semester of university, working part-time and, most importantly, enjoying life. It’s taken a lot to get to this point, but I’m so glad I’ve learned to listen to my body and advocate for the accommodations I need. Iona Young, 18, is studying a conjoint degree of law and arts at the University of Auckland full-time and works part-time as a school library assistant.

Parent to Parent September 2018

News

Petition for free card for Waikato’s disabled bus users

amilton woman Joy Ho has prepared a petition proposal to Waikato Regional Council for free local Busit fares for disabled people, and is seeking signatures.

“The issue has been on my mind for a while now since I have cerebral palsy and rely on public transport to get out and about independently,” Joy says. Intellectually capable, with a degree in accounting, Joy wishes to remain active in society, but says the percentage of transport costs from her part-time wages as an administrator is considerable. “Although many disabled people have mobility parking permits, some of us are simply unable to drive independently and require the assistance of others, including public transport, to keep us mobile,” she says. “I am unable to reap the benefits of the Total Mobility scheme as I do not require a door-to-door taxi service. “I have prepared a petition proposal outlining my request supported by evidence of various cities that already offer different discount incentives for disabled bus users. I do not see why we cannot have a similar scheme in Hamilton, and that it keeps up with the policy improvement of other cities.”

For a copy of Joy’s petition to sign click here, or phone Parent to Parent’s national office 0508 236 236.

Auckland – if you hold a current Total Mobility ID card or Blind Foundation ID you are eligible for an accessible concession (child fare rate). Wellington –Metlink city buses offer a 50% discount for people with disabilities . Melbourne, Australia –Access Travel Pass entitles free bus travel for people with a permanent physical, cognitive condition or mental illness. South East Queensland, Australia – disabled people can get access to a range of discounted or free travel tickets on Translink services. Scotland – the National Entitlement Card scheme provides free travel on registered local and long-distance bus services throughout Scotland for those aged 60 and over, as well as for eligible disabled people who are Scottish residents. West Midlands, UK – the English National Concessionary Pass gives disabled people free travel by bus anywhere in England during 'off-peak' hours. York, UK– eligible people can apply for a disabled person’s bus pass that allows free local bus travel throughout England during off-peak hours. Paris, France – the Améthyste travel pass provides reduced fares for seniors and people with disabilities. Singapore – the Public Transport Concession Scheme for Persons with Disabilities, grants card-holders 25% or more off adult fares for all basic bus and train services, and free travel for distances travelled beyond 7.2km. Taipei, Taiwan –welfare cards (including disabled persons with valid disability ID plus one companion) enjoy a 60% discount on every Metro journey.

Joy Ho. Photo: STEVEN MAHONEY

Parent to Parent September 2018

Parent to Parent August 2018

Opinion

Marginalisation

vs the mindset that leads to success

By MICHAEL PULMAN Social commentator on disability issues

n order for the next generation of disabled people to achieve greater life outcomes, their biggest supporters may need to consider their own attitudes, expectations, and willingness to challenge the myriad of barriers in the way.

One of the tougher sectors within the greater landscape of disability support is education. From the outset, disabled people are often marginalised, with too many staying at school until age 21. It is because the system does not present a fair opportunity for future education beyond school, but it is also a reflection of parental choices. There are a number of reasons why they decide to keep a young adult in the schooling system for as long as possible, and one is pressure applied by schools themselves. The financial incentives of Very High Needs Funding (VHN) can cause schools to shy away from providing enough support structures for disabled learners to have a good chance to enter and succeed in the tertiary environment, where real qualifications and degrees are on offer. Most special education teachers and aides do an incredible job with limited resourcing and time available, so just where all the VHN funding goes year after year is often difficult to justify. As of June 2017, according to the Household Labour Force Survey, 42% of disabled people aged 15-24 are not engaged in any form of education, employment or training. That’s a lot of young people to be out of education and work, so why? Barriers to education and work include accessibility to the built environment, accessible transport, personal care support that is inflexible, and restrictions placed down by Work and Income in regards to Supported Living Payments. Disabled people can only work a certain number of paid hours before cuts are made. Many cannot work full-time but manage well in a part-time environment, however, Work and Income restrictions mean, in reality, they are financially better off to remain on the benefit.

What sort of quality of life is that? What emotional and mental impact is this long-running marginalisation having on disabled people and their families? For young adults especially, a sense of belonging, capability and pride are key factors to having a mindset that leads to success. As a passionate social commentator on disability issues and someone who puts a lot of his disability-related thoughts online, I often get messages from parents of disabled children that disturb me greatly. They justify why something “cannot be possible” for their son/daughter as due to their disability, with little to no further explanation. Often, this justification is accepted by the disability community, without questioning why or looking for a solution. When this happens, that child just becomes another statistic in an already damaging report on community, education, employment and, dare I say, life participation for disabled people in New Zealand. For parents of families where only one child has a disability, look at how much expectation you place on that child versus the others. I believe parents should place the same expectations of kindness, respect, hard work, good grades at school, and eventual employment. Lowering the bar will do nothing for that child’s sense of ability. The disability does impair them, perhaps on multiple layers, and will likely never change, but the real challenge sits with how you continue to pave the way forward. Remaining stagnant only lasts so long before you begin to head backwards. We should all be invested in looking at the disability community objectively, and seek to advocate for the rights of disabled children. But it is even more crucial for parents and children themselves – this isn’t a job just for the professionals. Your expectations, your ability to let go and let that child experience the world, and your willingness to fight for what’s right for them matters. In a lot of cases it will teach them to do the same as young adults learning about barriers first-hand. Regardless of their disability, they will learn about those barriers – and want to find a way past them. realmichaelpulman.com

Parent to Parent September 2018

News

Filling a much-needed niche

hen Parent to Parent Otago’s regional coordinator Sheryl Davies attended a training session by Matthew Peppercorn, she was so impressed she asked him to present another for parents and children who were anxious. The July event in Dunedin was booked out with 160 parents and the feedback so positive, Parent to Parent NZ signed Matthew up as a facilitator for workshops nationwide. A registered mental health nurse and intellectual disability nurse of 25 years, Matthew was born and raised in the north of England, moving to New Zealand in 2002. He and his partner have two children and live with their cat in Dunedin. When he isn't nursing he enjoys mountain biking, live music, poetry and gardening. He is also a freestyle rapper and developing the art of beer brewing. Matthew became an intellectual disability nurse after his childhood experience of living in a home his parents created for children with disabilities. “Many children visited and I developed good relationships with them,” he says. “I was saddened when I met the same children in adult services – they appeared to have lost the spark for life they had as children – a stark reminder that available services can not work.” Matthew has a natural flair for education; he uses humour in stories mixed with his own lived experience of anxiety and depression. For the past 10 years hxe has presented on subjects around wellbeing and recovery concepts – teachings based on strategies he used to remain well, and others people he supported found useful. After working in district health boards and NGOs for 16 years he developed a sound knowledge of wellbeing services, support networks and online resources. “I also gained knowledge of some of the failings of mental health systems. Failure for people in need to meet criteria, slow assessment processes, ineffective clinical inputs, and a lack of compassion by some clinicians. “At the same time I saw the great work other clinicians did, and we created collaborative ties to get the work done.”

Parent to Parent September 2018

Eventually Matthew created his own organisation, TASK Mental Wellness. TASK aims to do for care services what Uber did for taxis and AirBnB for accommodation – overhaul the current model and bring it into a new improved future to meet people's needs. His love for music, walking, gardening and art has become a fundamental component of his recovery work with people experiencing mental distress. He drives a client-centred approach to care and support, through assessment and input that often takes place in beautiful bush or beach settings. “After all, who wants to sit in a grey office room?” Through TASK he plans wellbeing, koha-financed training sessions at a grass roots level in Otago. More than 500 people attended this year. Local community leaders are targeted to strengthen whānau and build on both individual and group resilience. Anxiety and depression training sessions focus on routes to wellness and first aid support. There is also emphasis on breaking down stigma around mental illness, and allowing people to talk openly about their struggles. He seems to be filling a much-needed niche. “Highlights have included people experiencing mental distress doing collaborative note-writing with their clinician, and being present at every meeting clinicians have about them. “They should be engaged in meaningful recovery work such as Wellness Recovery Action Plans, offered peer support services, and have treatment for associated physical health and addiction concerns. “People should also be supported with their cultural needs. These basic rights are, according to TASK, often missing from peoples’ care packages. The proof is in the paper work.” It was at one of these self-funded sessions that Matthew met Sheryl Davies from Parent to Parent. Now Parent to Parent has secured funding to put Matthew on aeroplanes all over Aotearoa to tell his personal story, educate, and provide support and resilience options. He hopes to meet you soon. Matthew Peppercorn www.taskmentalwellness.com

News

ANXIETY WORKSHOP Matthew’s Parent to Parent workshops are for parents suffering anxiety issues, parents of children with anxiety issues, anyone else experiencing anxiety, and people working in the field. He covers: •

The stigma of mental health

•

Stress compared to anxiety

•

Six types of anxiety

•

Stresses for parents

•

Stresses for children

•

Symptoms behavioural, physical and psychological

•

Autism and its relationship, triggers

•

What happens to the body physically

•

Autism and its relationship to depression

•

The symbiotic relationship between a parent and child

•

Anxiety in children/separation

•

Anxiety management

•

Anxiety management for children

•

Relapse plans

•

Anxiety attack first aid plan

•

Controlling thoughts, feelings and behaviour

•

The ‘think, feel, do’ triangle

•

Concerns about a child

•

Support plans.

“For our workshop people had a postcard they filled in if they wanted, with something they were going to try and change,” Parent to Parent regional coordinator Sheryl Davies says. “They handed it to me at the end of the workshop, and in a month I’ll send it back to them as a reminder, with a note to let them know we are here if they need support with their child. “There is a need for contact after a workshop, so Matthew recommends contacting Parent to Parent and TASK for follow-up support.” Matthew Peppercorn’s Anxiety Workshops for Parent to Parent NZ are generously funded by Care Matters. They are listed on https:// parent2parent.org.nz/calendar/ or contact your local Parent to Parent regional coordinator.

Matthew Peppercorn coming to a place near you. PHOTO: Supplied

Parent to Parent September 2018

Opinion

Turning passion

into a career Bearbrass Asylum Orchestra : (L-R) Tim, Jess and Anthea. Photo: SUPPLIED

By Dr ANTHEA SKINNER

musician. It was one of the hardest decisions I’ve ever made.

hen I was a child I had one passion – music. My great dream, nerdy as it sounds, was to be a classical musician. I played in bands and orchestras with my friends, went to any concert I could get tickets to and worked hard to pass auditions and earn music scholarships.

Now, as a 40-year-old, I have the privilege of looking back on a 20-year career in music, something that I’d never thought I’d get. I have a great job, and I get to travel the world talking to people and writing about the art form I love. I even still get to play at times. It’s taken me a long time to get here, and there were plenty of times that money was scarce (not unusual in music), but I wish I could tell my 16-year-old self that I didn’t have to give up my passion for music, I just had to find another way.

But as I entered my teens my disability started to hold me back. I was too tired to get up for early morning practise sessions. The pain in my muscles and joints meant I had trouble holding my clarinet, let alone playing it. And my hands and fingers refused to do what I told them. Reluctantly I gave up my scholarship, and my dream of being a classical

Parent to Parent September 2018

My first jobs in music were as an instrumental music teacher. I taught in secondary schools and in private lessons. I really enjoyed working with students but my fragile immune

Opinion As the three of us all have different disabilities, we feel free to explore our own ways of making music together and now regularly perform our songs about life with a disability... system couldn’t cope with being in contact with so many people. I caught every bug going around the school. I also found that when I did get sick and miss classes, my students suffered and would fall behind in their work. I needed a job with more flexible work hours. After that, I tried working in production. I managed performers, doing all their paperwork for them and I produced theatre shows, but the late nights and the frantic rush in the lead-up to every opening night would make my health crash and eventually I knew I had to stop. It was while I was recovering from one of those crashes that I first tried my hand at writing. At first I didn’t write about music, I wrote about my experiences of living with disability. I started to get published and soon had some regular writing gigs. For the first time in my life I could earn money from home, without putting my health at risk. As I became more confident about writing, I started expanding my repertoire. As well as writing about disability, I began writing about my first love – music. Whenever possible I would combine my knowledge of both fields, writing articles to encourage and inform people with disabilities about their options for musicmaking. While I enjoyed writing magazine articles, I found myself wanting to do more – to be able to conduct my own music research. It was then I realised that I wanted to be a musicologist, which is really just a fancy way of saying academic music researcher. As a musicologist I would be able to write and research music in the in-depth manner I’d always dreamed of. So I enrolled in a musicology course, and eventually earned my PhD. I knew from my experience as an

instrumental teacher that being a lecturer wouldn’t suite my fragile state of health, so I applied for and got a job at the university’s music archive. If my health made me miss a class as a lecturer my students would suffer, but the instruments and records in the archive don’t mind if I occasionally turn up late or miss work. I now work part-time in the archive, and parttime from home where I get to work on my own research and publications. I even get to travel the world, just last week my team of carers and I arrived home from speaking at a musicology conference in Borneo. And, in case you were wondering, I never did entirely give up performing. I moved from clarinet to percussion, which requires less finger dexterity, and continued playing in community bands until 2013. It was then my friends Jess and Tim and I decided to form our own band, the Bearbrass Asylum Orchestra. As the three of us all have different disabilities, we feel free to explore our own ways of making music together and now regularly perform our songs about life with a disability at events around our hometown of Melbourne. So that’s my personal story of my love for music, but it also shows that, with a bit of extra thought, people with disabilities can find ways to turn their passions into fulfilling hobbies and rewarding careers. There are plenty of jobs for people who love music, from audio technicians, songwriters, and front of house staff, to teachers, radio hosts and instrument-makers. Likewise, a passion for food and cooking can lead to a whole range of jobs, from head chef, to restaurant reviewers, green grocers, butchers and dishwashers. When living and working with children with disability it’s so easy to focus on what they can’t do. As a disabled adult who was once a disabled child, I encourage you to support your kids to follow their own passions, whatever they may be. You never know where they might lead.

Parent to Parent September 2018

People

Mum’s sol Hope was referred to the Child Development Service at Southland Hospital, which had seen her when she was about 18 months. A neurologist referral was made. “I was then told that they didn’t know what was wrong, and so they named it Global Developmental Delay.” Hope was two-and-a-half. By CLARE CHAPMAN Freelance writer

ope is an apt name for this little girl. Now almost six, she is lucky to have such a determined mother – without her it is unlikely she would have been diagnosed, missing out on the vital support she will need for life. When Hope Taylor was born, her mother Amber Tito knew what she was in for. She’d had an 18-year break between children, but Hope was her third and came into the world like most other babies, without issue and into the arms of her adoring mum. What followed, however, was anything but run-of-the-mill. Amber first noticed something amiss in the first few months. Hope cried more than Amber thought was normal, and was a fussy feeder. That aside, Hope’s early days went as expected. By the time she was seven months, things were starting to become slightly worrying. She hadn’t rolled over and wasn’t attempting to sit. It was at this stage Amber and Plunket knew something was different. Amber was referred to Conductive Education, an organisation helping parents and children attain developmental milestones. “Due to waiting lists, we didn’t catch up with that organisation until Hope was about one. At that stage, she wasn’t babbling, wasn’t sitting and hadn’t rolled over,” Amber says.

Parent to Parent September 2018

“I was told that it’s probably an ongoing thing, they didn’t know what caused it, and the chances that Hope would ever walk were slim. Blood tests were done and had come back normal, and she had an EEG after she had her first seizure just before her third birthday. That confirmed she also had epilepsy.” What followed was a series of events almost unthinkable for any parent. Over the next year, Hope continued to have severe seizures while the right medication was trialled. “They were horrendous, horrific seizures where she would foam at the mouth, her eyes would roll back in her head.” A year later, the right medication was sorted out and Hope hasn’t had a seizure for the past 12 months. During that year of trial and error with medication, seizures weren’t the only issues. “Hope crawled around the age of four, but never spoke. The geneticist told me that unfortunately further tests could not be done due to financial reasons, and the paediatrician said I should go look online myself. He told me parents often diagnosed their children from Google, and that’s what I should do. I had my social worker with me at this appointment, who can confirm this is the advice I was given.” Amber did exactly what the paediatrician suggested – she Googled and researched online. She came up with Angelman syndrome and took this information back to the paediatrician.

People

lo battle for Hope “Hope fitted into all the categories for the symptoms and I knew that’s what she had,” Amber says. But a blood test for the syndrome had negative results. Due to her research Amber knew only around 40 per cent of children with the syndrome were diagnosed with that test, so she requested two others with a higher percentage of correct diagnosis. These were refused by the geneticist for financial reasons. Shortly afterwards, Amber was re-contacted by the team of geneticists – they wanted to send Hope’s blood to Japan for testing for a different syndrome. Amber agreed, still convinced the answer was Angelman’s. “I heard nothing for six months and then I got a letter in the mail, which was a diagnosis,” Amber says. “I couldn’t go to work that day and had to call my social worker to come over.” As it turns out, Hope’s blood was tested in Japan for various things without Amber’s knowledge, one of which was Angelman syndrome. Testing confirmed Hope’s UB3EA gene was missing, which identified her as having Angelman’s. This letter and diagnosis came when Hope was five, and was the result of years of gritty determination by Amber, up against a lack of assistance and openness from medical professionals. “Because she was not diagnosed earlier, I lost all the funding and respite care I desperately needed as well.” For Amber, a single mum who works full-time, it was another battle she fought and won. Hope is now attending school, and after school care as a result of support through Accessibility, and is part of a small satellite class at a local mainstream school in Invercargill. She has never spoken, aside from the word ‘mum’, and isn’t likely to attain more than a handful of words over her lifetime.

A defining part of Angelman’s is frequent smiling, and that’s something Hope is very good at. She beams, and is a bubbly, happy little girl . . .

But she did learn to walk – unassisted for significant distances, although due to muscular issues also requires a wheelchair. A defining part of Angelman’s is frequent smiling, and that’s something Hope is very good at. She beams, and is a bubbly, happy little girl, with a mum who has faced an uphill battle but retained her determination and hope for the future. That future for Hope will consist of life-long care, and Amber’s hope is she receives the best available. Joining Parent to Parent a couple of months ago helped Amber immensely, she says. “That is what I would say to other parents facing similar situations to ours. Join support groups like Parent to Parent. I’ve taken Hope to two or three local events and having that support has made a huge difference.”

Parent to Parent September 2018

People

Self-awareness

journey for teen By DENISE IVES

n the December 2017 magazine I wrote: “… is Angela happier as Angela than she was as William? 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 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?”

to be Angela – concerned her decision to go back to male was based on her fear of not being accepted. I also realised her moodiness of the last few weeks was due to her worrying and trying to work out what she wanted to do.

My concerns were dismissed – she’d firmly made her decision and wanted to go back to being known as male, however, she said she’d never really liked her birth name and didn’t want to go back to using it. Shortly after the middle of February 2018, Angela broke We chatted about it for a few days. down in tears and incoherent apologies. She’d recently had Angela had been on puberty blockers for a year and once her 14th birthday. She’d been a bit grumpy and what we they stopped, male puberty would assumed was ‘teenager-ish’ for a resume. Once facial hair starts to grow few months, becoming a bit more or voice changes take place, it cannot reclusive and not wanting to go be fully or easily undone. Out of everything she out. We talked about the idea that he didn’t said to us, the saddest have to choose a gender – perhaps a It turned out she had been non-binary identity would feel more words were, “I thought debating her decision to be Angela, comfortable, but with his wonderful and decided it wasn’t right for her being a girl would make autistic reasoning he was adamant after all. me happy, and it hasn’t” there are only two genders. Out of everything she said to us, the saddest words were, “I thought being a girl would make me happy, and it hasn’t”, followed by heartbreaking sobs. She felt her interests and way of speaking were too ‘male’ and that she would never truly pass as female. Along with that was a whole load of guilt and apologies – worried everyone involved in her care would be cross with her for ‘wasting their time’. To be honest, I’m not sure how I felt at that point. Part of me was desperately sad to see this beautiful soul so upset, confused, and scared she would be in trouble with her paediatricians, or that we would all love her less. Another part of me just wanted her to STOP. If I could’ve put the world on pause at that moment, I might have done it! I was worried Angela was making a decision she would later regret – just as we worried when she first told us she wanted

Parent to Parent September 2018

I admit thinking “how on earth am I going to tell everyone?”. We’d only just stopped explaining our child’s change of name and gender, and now we’d have to explain again. It’s confusing for people, especially those who have never encountered gender dysphoria before. Everyone had been accepting, so I hoped they would continue that way. All his friends were completely relaxed about it, in fact, one parent commented how his children (13 and 15 years) were blasé about the changes, but that he personally found it confusing and wondered how we coped. So Angela is now male again, and has chosen the name Nash. Interestingly, he has kept his female middle name. A few months on and we’re used to the change and using the correct pronouns pretty much all the time. Nash is happier, although had a small increase in anxiety medication last month too. He says he’s still happy with his decision, but

People

disappointed puberty hasn’t rocketed along producing facial hair and a deeper voice! Nash is still home schooled and very much into PC gaming. He’s firm in his desire to make at least a partial living from this, and intends to top up his income by working as a barista. That may change as he’s also very keen on dogs. Currently he helps a friend of mine for a couple of hours a week, bathing, drying and brushing dogs in a grooming parlour. If you consider the noise in a place like that, it’s a massive step – and means he has to leave the house. He’s up and out a little earlier than he would be for school, so has to organise himself well in the morning, which takes some support, but he’s learning well. Some dogs are trickier than others and he prides himself on being able to help and support the nervous dogs. He even talks to owners about their dogs when they drop them off. Nash explained all the important things he needs to remember when he shampoos a dog – I’ve learned there’s a bit more to it than just rubbing in a bit of shampoo. Asked how he managed to remember it all, he said his brain is a bit like a computer with lots of tabs open. By switching to whichever tab he needs for the task he’s doing, he has everything he needs to remember. I think it’s amazing he knows that about himself.

Having a crazy moment with undies over PJs makes his mum laugh.

Nash is becoming more aware of himself – his behaviour and stressors. He says he’s glad to get this ‘work’ practise with my friend, as it helps him learn to be responsible and understand more about what it’s like to work. It’s a lovely thing to see him growing up like this, and I feel so incredibly proud of him. I doubt he’ll go back to formal schooling, but I’m confident he’ll be capable of living independently and looking after himself when he’s older.

Denise Ives has a background in teaching adults to use computers, IT project management, and has a certificate in teacher aiding, working as a teacher aide at a primary school. She is a full-time home educating mum to Nash, and also has a 24-year-old son and a four-year-old granddaughter. Denise founded the charity The Breast Room in Dunedin, which provides free one-to-one counselling and support to breastfeeding parents.

Nash chills out with a dog that was too scared to be groomed. Nash calmed him down and they became the best of friends.

Nash’s dog Asii.

Parent to Parent September 2018

Books

Living with the gift of autism By MONICA HOLT Freelance writer

“S

he gives us a lot of joy and she is an incredible human being.”

Emilia was seven when diagnosed with autism and at the time Ali Beasley, a Nelson mum-of-two, found information hard to access. “I couldn’t find anything on the library shelf that was really accessible; that was easy to get into and relate to.” So she wrote Emilia’s Colours, The Gift of Autism, a book parents can refer to when they walk out of the paediatrician’s office. The book, in the parenting and self-help genre, aims to raise awareness and understanding of what she calls “the invisible disability”. Ali points out, that seven years on, there are a lot more support groups out there for parents, including Facebook closed groups where parents can share information in a safe forum. Ali has a degree in English and worked as a grants writer for a charity, so writing came naturally. “I would designate time during the day and make sure I had at least three hours a day to specifically write – and it all just poured out of me really. “It was the creative process taking over, it was space, and it was giving myself a voice to share with others.” While it has been a hard road, Ali wants to share her experience and the many positives along the way for herself, husband Keith and Emilia’s brother George, 19, now at university. “Emilia is 14 ½ now, she is a bright, lively, energetic young lady. She’s really passionate about animals and music and fashion, she loves Hospice shopping, and dog walking on the beach. “Animals are her absolute favourite thing at the moment, particularly dogs and horses. She gets a lot of therapy through touching and stroking because she’s very tactileseeking.”

Parent to Parent September 2018

Emilia attends a special education department at Waimea College in Richmond where the family lives. “She is autistic, and other parts of that diagnosis, are that she has severe anxiety at times and dyspraxia, a motor coordination disorder. “How that looks is, she can’t ride a bike, do up her shoe laces, and she struggles to write words. So, when she’s writing, and you were to assess it, it would look like a preschooler’s writing. “It’s important for her to use a device like an iPad so she doesn’t get frustrated with the laborious task of writing, as it takes up so much effort. “Dyspraxia does impact on her daily life in terms of organisational skills, for example, lack of planning. Emilia can be oppositionally defiant, and displays OCD tendencies as well, so she can become obsessive about things. “If she is obsessive it is better to just allow her to, and follow that special interest rather than stop the obsession – if that makes sense – as I think it is driven by anxiety and is a way of controlling her environment in some way.” Emilia, who once struggled to catch a ball is now playing Special Olympics basketball. Ali has a deep love for her daughter which comes through in her book. She says moving to a place of acceptance has been one of the hardest journeys for her as a parent. “Autism is with our family for the whole of Emilia’s life. It does impact every day, it is 24/7, it is hard work, I am not going to lie. But it is the small things that become really precious – when she does achieve something and when milestones come you are just thrilled. “I am accepting because I think until you accept you can’t move forward and do your own healing in terms of what your life is, instead of perhaps the original idea of what parenting should look like.

Books

“Artistic, sparkly, and funny,” is how Ali Beasley describes her daughter, Emilia. “That is really what I set out to achieve when I wrote the book – it was about my own self-healing and learning to look after myself so that I can be a better mum.” Self-care is a priority for Ali who does yoga and Qi gong, a form of moving meditation. “If I get up in the morning, and I haven’t slept (which seems to be a side effect of being a stressed parent), I will do some of that and it resets my own energy. “People find relaxation in their own way – it could be a walk with a dog on the beach, it could be you’re into cycling or using the gym. But it is critical to recharge your batteries so you can continue to give out to your child in a balanced and nurturing way."

Ali Beasley and daughter Emilia.

“I talked at an Altogether Autism conference earlier this year from a 'lived experience' perspective, so the book has a life of its own as it is circulated within the disability sector.” Family support helped her self-publish. “My mum came over from the UK and said ‘we need to get this book out there’, so she very kindly gifted me the money which was really unexpected and a fantastic opportunity.” Ali was also grateful for the support from a local publishing company with design and layout and printing. Emilia’s Colours, The Gift of Autism is available at libraries and all colleges in the Tasman district, on fishpond.co.nz, or Ali’s website alibeasley.com. Parent to Parent NZ established the Altogether Autism service eight years ago in partnership with Life Unlimited. It is contracted by the Ministry of Health to provide Altogether Autism services nationwide through its regional coordinators and national office staff, the majority of whom are mothers of children with autism. Parent to Parent has also published the free introductory About Autism booklet for Kiwi parents, grandparents, caregivers and professionals.

Evelyn is one of the main inspirations for this book, as it was she who could see Emilia’s ‘colours’. When Emilia was five, Evelyn said to her mum: “My friend is a rainbow. Every day she shines a different colour. You don’t need to talk to understand what she is saying to you – just read her colours.”

Parent to Parent September 2018

Services

Books Win a copy of ‘Ben’s Buddies’ - a story about Ben, his friends, and a dog named Lulu! Learn how to care for a buddy with epilepsy in this beautifully illustrated book, in both English and te reo Māori. Kindly donated by Epilepsy Waikato Charitable Trust HOW TO ENTER: Comment on our facebook page with a pic of you and a buddy (of the human or animal variety) who is there for you no matter what. The pics that wow us the most will win! There are two copies up for grabs; winners will be announced at the end of September. facebook.com/parent2parentnz

Camps a great place for kids to start M

ost children with Juvenile Idiopathic Arthritis (JIA) grow up to be well-rounded people living active lives, and Arthritis New Zealand’s annual Children’s Camp aim to help make that a reality. Every year since 2011, children have been invited to the Children’s Camp for two days of active fun and making friends with people experiencing the same challenges. Camp is a great place to start on a pathway to learning skills and strategies to cope with the feelings, pain, and strained relationships associated with JIA. Details of the 2019 camp will be finalised soon and next year Arthritis New Zealand hopes to welcome new faces and grow the JIA support group. The 2018 camp in Matamata had 25 families, and 17 of those were of newly-diagnosed children. The weekend was a huge success with wonderful weather, great fun and giggles all round. Keep an eye open for details of the next Children’s Camp on www.arthritis.org.nz.

Parent to Parent September 2018

Services

Support for children and young people with autism

or people with autism, life can be a challenge. Young people in particular often face a lonely and isolated existence as they struggle to understand their emotions, thoughts and feelings.

“Manu has no friends at school and doesn’t know how to make them,” explains his dad Tane. “Since being at Kids+, Manu now greets visitors at the door and he makes eye contact with family members. These groups are often the only social setting where individuals can be with those that embrace their differences and share a similar outlook.”

Autism can also have an impact on their whānau and caregivers, but with very little funding out there, services for young people are few and far between. Enrich+ Spectrum Energy, based in the Waikato and Bay of Plenty, is trying to make a difference in this area with a range of personalised services for individuals, families and caregivers, as well as schools and employers supporting people with autism. Families have commented on the positive impact that the social and communication skill development groups have had for their young person, not only at home but also in the school environment. With a range of safe and supportive programmes provided, from Kids+ (for five to 10-year-olds) through to Teens+ (11-15) and Youth+ (16-25). Each group provides activities, discussions and games to build confidence and self-esteem, facilitated by experienced and qualified staff members. The focus of each group is different with the emphasis on developing age-appropriate skills. Kids+ uses imaginative and creative play to develop young children’s social skills and ability to communicate. The teen group focuses more on helping students adjust to the challenges of starting intermediate and high school.

Finally, Youth+ provides the tools necessary for life after school and options available to youth. Programmes take place on Wednesdays in Hamilton and Thursdays in Tauranga during term time. •

Kids+ 4pm-5.15pm

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Teens+ 5.30pm-7pm

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Youth+ 7.30pm-9pm

For more details email info@enrichplus.org.nz, 0800 ENRICH, or visit the Facebook page Enrich+ Spectrum Energy.

Parent to Parent September 2018

Services

Maximising the ability in disability

onductive Education is a term people often hear, but most have no idea what it is and who it can help.

It has been available in New Zealand for almost 30 years and, during this time, has helped thousands of people with disabilities to learn skills which have improved their quality of life. Conductive Education’s byline is Maximising the Ability in Disability, which describes what it does perfectly. Its team of specialists work on all areas of development –gross motor (sitting, crawling, walking), hand skills, cognitive, social, communication and life skills.

routines-based programme has proven to be very effective with many other conditions. Conductive Education works with babies right through to adults of all ages in 12 affiliated centres throughout the country – early childhood/early intervention, school facilities and adult programmes. The great thing about the programme is that it is very practical – the functional skills taught are able to be integrated into your daily life.

It’s not a magical cure - but it does work!! Visit the website for more information and centre details www.nzfce.org.nz

Originally developed in the 1940s for motor disorders such as cerebral palsy, strokes, Parkinson’s disease etc., the

Google can’t give you what we can OUR FRIENDLY, PROFESSIONAL librarian is here to support you and your family. She will find the best and most knowledgeable answers to your disability related questions from over 25,000 resources held by the CCS Disability Action Library & Information Service. Subjects relate to parenting, language, toileting, puberty, behaviour, education, access and buildings and much more. Our library contains books, DVDs, journals, articles and e-books all of which are available to you completely free of charge. To see our newest additions, sign up to What’s New in the Library?

Get in touch

http://ccsdisabilityaction.softlinkhosting.co.nz/liberty/libraryHome.do 0800 227 200 (ask for Information Service) or (04) 801 0854 info@ccsDisabilityAction.org.nz

Parent to Parent September 2018

News

Frames for active growing children Nano vista kids and teens eyewear • 2 in 1 eyewear for school and play

• Fun and lightweight to wear

• Tough and flexible for all sports

• Fun colours including glow temple models.

• No screws and adjustable to fit just right For more information or an appointment see: Martin and Lobb Eyecare Invercargill 03 218 9621 martinandlobb.co.nz

Visique Whakatane 07 308 8487 facebook.com/whaktanevisique

Stratford Optometrists Stratford 06 765 7764 stratfordoptometrists.co.nz

Nicholls and Associates Browns Bay Auckland 09 479 2316 nichollsoptical.co.nz

Papakura Eyecare Papakura Auckland 09 298 2898 papakuraeyecare.co.nz

Sercombe & Matheson Opticians Wellington 04 472 4261 opticians.co.nz

Rolleston Eye Rolleston Christchurch 03 347 1667 rollestoneye.co.nz

Visique Rototuna Hamilton 07 852 5625 facebook.com/ rototuna-optometrists611506688977880

Lincoln Eye Lincoln Christchurch 03 325 7267 lincolneye.co.nz

Nano Vista NZ

For more information 07 307 2410

Health & wellbeing

Photos: JASVINDER GREWAL

Kids pose in calm places By CLARE CHAPMAN Freelance writer

hile yoga is a popular pursuit for many adults, it’s still an activity that isn’t widely used for children. However, one passionate yogi is changing that session by session in South Auckland. We spoke to Suki Kaur about her journey introducing children to yoga. For Suki Kaur, Parent to Parent’s regional coordinator for South Auckland, the notion of teaching children yoga came about as a response to her own children. “When my now 11-year-old was little he used to struggle with lots of tantrums and meltdowns, and because I was practising yoga myself I thought it would be a wonderful way to help him deal with his emotions,” Suki says. So she set about teaching her son breathing exercises and ways to calm down, and says the results were amazing. “It made such a difference to him.” Then domiciled in Singapore with her family, Suki enrolled in and completed two specialised courses about teaching children’s yoga, Rainbow Kids Yoga and Radiant Child Yoga, and she is now a certified children’s yoga teacher. When Suki joined Parent to Parent about a year ago it seemed obvious that her new position provided a wonderful opportunity to use her skills further and help families in Auckland by working with children to develop yoga techniques. So far, Suki has completed two yoga classes as part of a SibShop and a Sibling Activity Day, both regular events run by Parent to Parent to support siblings of a child with a

Parent to Parent September 2018

disability, and the feedback has been resoundingly positive. “Kids’ yoga is not very popular in South Auckland so it has been wonderful to introduce these children and families to it,” Suki says. “It’s a really fun way to interact, communicate and bond with your family members.” Suki’s classes are relaxed and focus on fun rather than complex techniques and poses, and parents are welcome. “Yoga is beneficial in so many ways, but especially emotionally and physically and the beauty of it is that it’s non-competitive, mind expanding and a great way to build strength and self-esteem; it’s something everyone can do in their own time and way. “It’s also a wonderful way to help children develop body awareness and to teach them to use their body in a really healthy way. One of the most beneficial things I’ve found teaching children yoga ’though is its ability to help reduce stress through breathing exercises.” Along with the host of benefits, the children attending Suki’s classes relate to them simply as ‘fun’ because the time is underlined by laughter, movement and song. “I always try to incorporate a lot of really fun poses. Children in particular always love fun partner poses,” Suki says. “I so enjoy seeing children taking time breathing, or if I do a guided imagery, helping them get into their calm places. I love seeing how they really enjoy it and it’s often something they take home with them and can do with their families at any time.”

Health & wellbeing

It’s the straw that bends, not the person

plastic straw ban may not seem like an inconvenience for people still able to sip without them, but for some people straws are a line to survival. People with disabilities relating to their hands, who can’t hold/lift a cup/glass of liquid, or who can’t move their head, need straws to drink. While they are usually prepared for any given situation and carry adaptive pieces with them, the key message for retailers is to consider people with different needs when banning plastic straws. For those who plan to still offer straws by request, there are alternatives to plastic, so people with disabilities are not completely excluded from drinking whatever they want. •

Reusable stainless steel and glass straws come with cleaning brushes and are dishwasher safe. They may not be ideal for small children or people with disabilities as they are inflexible and may damage the mouth or teeth

e-use l g n i for s traws s t c a F ic s plast •

The 11th most-found ocean trash (2018 Ocean Conservancy).

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Most commonly made from type 5 plastic, or polypropylene, and can’t be recycled in most places.

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It takes up to 200 years for a plastic straw to degrade, but it will never be fully off the Earth as plastics are not biodegradable – they break down into smaller, invisible pieces.

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Degrading plastic releases chemicals that contaminate the environment and are toxic to wildlife as they concentrate in the food chain.

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Americans use 500 million plastic straws daily – enough to circle the Earth 2.5 times.

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Kiwis use 200-500 million straws every year.

of someone who cannot sit still or has involuntary head movement. •

Reusable silicone straws (more flexible than metal or glass).

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Biodegradable paper straws are available in standard, smoothie and party packs – choose a brand that does not go soggy if a person takes too long to drink, as children or people with disabilities may choke on dissolved paper.

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Bioplastics (although not all equal) are derived from renewable biomass sources – hemp, potato/corn starch, bamboo.

The Rubbish Whisperer is a Kiwi-owned company advocating straws on request so they are still available for those who need them. “By only offering paper straws as customers request them, you’ll reduce straw consumption by up to 70%, diminishing the increased cost of switching to paper straws,” says spokesperson Helen Townsend-Rupp.

The final st

raw

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The earliest drinking straws? Possibly the gold tube inlaid with lapis lazuli found in a Sumerian tomb dated 3000BC. It was used to drink beer.

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Marvin Chester Stone was an American inventor best known for inventing the modern drinking straw. People used natural rye grass straws, which imparted a grassy flavour, so Stone made the first prototypes by spiralling a strip of paper around a pencil, gluing it at the ends, and coating it with paraffin wax.

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Why was the bendy straw invented? It's the straw that bends, not the person. Many inventions are intended to solve problems like the bendy straw. It was patented in 1937 by American inventor Joseph Friedman after watching his daughter Judith struggle to drink a milkshake from a too-tall straw while seated at a sweet shop. He couldn’t make his daughter taller or the counter shorter.. How? He put a screw into the straw and wrapped dental floss around the outside of the straw, which then became bendy.

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Question: How many holes does a straw have? Parent to Parent September 2018

gised

Feel ener

d o o G l e e • F

Red Seal Floradix Formula Floradix is one of the tastiest and most effective ways to top up on iron because unlike tablets, it’s absorbed immediately. Available from supermarkets and pharmacies. Read the label. Use as directed. Endeavour Consumer Health, Auckland. TAPS NA 9960 floradix.co.nz

er you, Looking after them aft k o helps you lo

$23.99 RRP

Feel beautiful Glow Lab Night Cream, 50G A deeply nourishing night cream that harnesses the power of Vitamin C and E boosted with active ingredients to accelerate skin renewal and increase skin luminosity by up to 30%*, all while you sleep! Gentle enough for even sensitive skins. Available in Countdown, New World and Pak’nSave stores nationwide. *SuperOx-C™ may increase skin luminosity by up to 30% after 30 days.

The Rubbish Whisperer Paper Straws, White, Flexible, Standard 100% biodegradable flexible paper straws to replace plastic. These are home compostable, certified Food Safe and produced in the USA from sustainable sources. Lasts 20 times as long as other paper straws. Safe for marine life if they end up in the ocean. 19.68cm long (also available 26cm). rubbishwhisperer.co.nz

$20.00 RRP

Feel proactive

$34.50 RRP for 600

Feel stylis

SK Clothing Triangular Bandanas Add a touch of style to outfits with our brightly coloured triangular bandanas. Pre-shaped and with your choice of quick-attach velcro strip or domes, these bandanas are simple to put on, take off and clean. Clothing for rest homes, special care facilities and caregivers of people with high needs. skclothing.co.nz

Feel peace of mind

LesGoKidsz, GPS Tracker Watches

Keep in touch with your child with this two-way calling device and GPS tracker. Kids can call their parents mobile and push an emergency button automating a text to all contacts on the watch. Parents can call and locate the watch and will be alerted when the watch is removed. facebook.com/lesgokidz

$18.00 RRP + postage

$70.00 RRP +postage (can pick up in Auckland)

Feel calm

W.S. Medical Protac SenSit A specially made chair for children and adults that stimulates the senses and promotes calmness. With its four side flaps, the chair hugs the body closely, giving the user a feeling of restfulness, comfort, security and well-being. $3277.50 RRP

Feel rested SleepDrops, Sleep Drops for Kids Get through the daylight savings change with SleepDrops for Kids offering a relaxed and restful sleep for your sleepless child. A natural tool that can switch the nightly tears and tantrums to settled and easy sleeping. Supporting children aged 3-12 years old to calm their overactive minds and get to sleep faster. sleepdrops.co.nz

Parent to Parent September 2018

Enter code SDK5OFF for $5 off

Health & wellbeing

Doco embraces body positivity By LOUISE RATCLIFFE BSc (Hons) Parent to Parent Information Officer

s a child I felt constantly under scrutiny for the way I looked; glasses, buck teeth, Burmese features and a bottom that stuck out far enough my ballet teacher named me “tea-tray bottom”. So at 13 I started my first diet to try and mold my physical form into something more socially acceptable. The ’90s was the decade of heroin-chic; stick-thin models with gaunt faces on every other page of Just 17 magazine. I was the youngest kid in my year due to being accelerated from primary to secondary a year earlier than peers, so constantly felt the need to prove myself worthy of being around older girls.

Louise.

After years of counselling, family support, three children and time, I overcame the bulimia and started being kinder to my body. I still struggle with it, but I’m determined not to pass my issues onto my children. Whilst perusing the memes and comedy cat videos on Facebook one day, I came across the Body Image Movement (https://bodyimagemovement.com/ ). Having just turned 40 the previous year, I was finally taking steps to accept my own body being more of a marshmallow than a model, and this looked like a group I could get behind.

After years of calorie-counting, point-counting, weekly weigh-ins, meal plans, replacement drinks and awful bodyshaming marketed as group support, I never got the results I wanted. I was still a size 14 rather than a 10.

They had a movie out, Embrace, which documented Taryn Brumfitt’s journey around the world exploring body image issues, inspired originally by an unusual before-and-after picture she had posted on social media. I really wanted to see Embrace but there were no screenings listed in New Zealand, so I took advantage of the offer to host my own screening in a local cinema, and here we are!

Next, I attempted anorexia, eating tissues to fill my stomach and drinking vinegar to curb my appetite, but my body’s natural survival instinct always took over and I ended up eating to excess. Then came the bulimia; I tried throwing up, but it hurt too much, so I turned to laxative abuse.

Ticket sales crossed the threshold of 55 at the beginning of September, and I’ll donate any funds I receive back to Parent to Parent, as it is an inclusive advocate for every BODY, no matter what size, shape or ability. Tickets can be reserved at https://tickets.demand.film/event/5843.

This became the norm for me. I’d obsess over food, count calories, weigh and measure, then give into a craving and binge, only to feel like a terrible person and overdose on laxatives to rid my body of unwanted food. It never actually made me lose weight.

Embrace, Thursday October 18 at 6.15pm, Hoyts Te Awa The Base, Hamilton. Parent to Parent is also hosting Embrace in Whangarei, Auckland, Nelson, Blenheim and Invercargill, with more screenings likely.

Parent to Parent September 2018

Health & wellbeing

Exercise improves your mood

growing body of research shows that exercise can be as effective as medication and psychotherapy in treating mood disorders, depression and anxiety. So if you exercise to improve your mood – whether it be walking with a friend, lunchtime yoga to de-stress, or running to clear your head – you are on the right track. “When we compare exercise with other treatments for depression and anxiety, we get a tie,” professor of psychology and brain sciences at Boston University Michael Otto told the Washington Post. “But unlike medication, with exercise you get only positive side effects.” While some antidepressant medication can cause side effects including insomnia, blurred vision, weight gain and decreased sex drive, exercise has been shown to reduce blood pressure, improve cognitive function, maintain or reduce body weight, regulate blood sugar and improve sleep. Prof Otto is co-author of Exercise for Mood and Anxiety: Proven Strategies for Overcoming Depression and Enhancing Well-Being with University of Texas at Austin psychology professor and Anxiety and Depression Association of America spokesman Jasper Smits. Prof Smits says prescribing exercise to treat depression is not easy. “Most physicians and counsellors are not trained in exercise intervention, plus, it's a lot more challenging to exercise than it is to take medication.”

Parent to Parent September 2018

What kind of exercise makes us happy? Most research regarding mood benefits involves moderate aerobic exercise (e.g, walking fast) for 30 to 40-minute sessions four or five times a week. A moderate activity is when you can talk while exercising. More vigorous workouts are better suited for people with anxiety, Prof Smits says. “High-intensity workouts create responses in the body that mimic the symptoms of anxiety.” He says this is key, because instead of thinking you're having a heart attack next time you experience severe anxiety (which often causes heart rate to rise) you start associating your symptoms with something healthy – exercise. Along with building tolerance for anxiety symptoms, creating community and countering isolation, exercise provides a sense of achievement and self-confidence. Exercise also strengthens a person's ability to cope positively with life issues (instead of negatively such as overeating or drinking alcohol) and releases endorphins. And it contributes to mindfulness: when we exercise, our brain refocuses, especially if the workout is strenuous and requires concentration. “You have to pay full attention to what is going on right now,” says Prof Smits, “and that helps you stay away from the future and the past, which is where anxiety and depression stay alive.” Experts say the benefits to mood are almost instant – usually the same week someone starts – unlike people who exercise to lose weight or build muscle.

Welcome

New faces

Jane Bawden – Chief Executive

We welcome Jane Bawden as Parent to Parent’s new CEO. Jane brings over 20 years’ experience in the disability sector to her new role. A lawyer by background, she has held numerous governance roles including with SAMS and Spectrum Care. She is currently chairing the Health and Disability Commissioner’s Expert Advisory Group on health and disability research – it involves adult participants who are unable to give informed consent. Having advised consumers and providers in the health and disability sector for many years, Jane has a Master of Laws (first class honours) and is a Chartered Member of the Institute of Directors. Jane and husband Royden are the proud parents of 20-yearold twins, one of whom has a rare chromosomal disorder and

autism spectrum disorder. This year he has happily embarked on his adult life with confidence, support and a vision aligned with Enabling Good Lives (EGL) principles. Jane attributes this success to the support she and her family received through the teachings of inspirational disability leaders including Parent to Parent’s own board president Lorna Sullivan, Mark Benjamin of SAMS, Janet Klees and Dr Michael Kendrick. These fundamental principles, practical skills and inspirational stories from other families gave confidence that a great life could be created for their son. Jane has her eye firmly on ensuring that the Parent to Parent community is supported to access all the opportunities the EGL roll-out and Systems Transformation will offer, so that we have many similar success stories to share. Success creates vision for others, and vision in turn creates a path for families to follow, on their own terms, aligned with their own values and culture.

Carol Armstrong – Support Parent and Volunteer Coordinator Carol was born in Ireland and while there studied Applied Social Studies and Social Care. After working for a number of years in Dublin’s city centre with atrisk youth, Carol visited New Zealand to meet a pen pal (whom she had been writing to since age eight). Well, long story short – she loved it and stayed. Soon after falling in love with New Zealand, she fell in love with Ed and lived in Auckland while working as a caregiver for physically disabled adults. It was through this work Carol came to volunteer in the sport of boccia – a Paralympic sport. She was the national team manager for two years and has been an international referee in boccia since 2003. She even went to the 2008 Paralympic Games as an official. To this day, she is still a volunteer in the sport and values the variety of roles and duties volunteers undertake.

Carol’s career journey went from caregiver to early childhood educator after gaining her Bachelor of Education (ECE) from AUT. After moving to the mighty Waikato in 2013, Carol changed career to sport development in the disability sector. Carol worked for Parafed Waikato and Sport Waikato for over four years to grow participation in sport recreation among disabled Waikato residents. One of her proudest achievements is helping to set up and grow the sport of powerchair football in the Waikato. Carol is a proud mum of one, is really looking forward to undertaking the role of support parent and volunteer coordinator, and excited about where this journey will take her.

Parent to Parent September 2018

Welcome

New faces

Helen Smith – Waikato Regional Coordinator Helen was born in Durban, South Africa, and immigrated to New Zealand when she was six. After a year in Auckland her family settled in Hamilton where she grew up with two older brothers.

Helen was born in Durban, South Africa, and immigrated to New Zealand when she was six. After a year in Auckland her family settled in Hamilton where she grew up with two older brothers. After completing school Helen went on to the University of Waikato, completing a Bachler of Communication Studies with a double major in Marketing and Media Studies. Her academic achievement granted her entrance into the Golden Key International Honours Society. While studying Helen also worked as an OSCAR coordinator and was involved in the establishment of new programmes.

Helen had a successful career in the communications sector, which she put on hold to start a family. She spent five years as the primary carer for her son diagnosed with ASD, completing Early Intervention and additional parent training. She also has twin boys who were two months premature and their development was closely monitored. For the past eight months she has been an active Support Parent with Parent to Parent. Helen returned to the workforce working briefly at a special needs school, confirming her desire to work in the disability sector and her passion for helping families. Helen feels that being a coordinator gives her a chance to utilise her skills to educate, inspire and support families, as she understands the significance of that support. Helen looks forward to meeting everyone and being a part of their journey.

Christina Slade – Administration Support Originally from South Waikato, Christina moved to Dunedin where she met her future husband Mark. They moved to Tauranga before settling in Hamilton where they welcomed son Cory in 2010. Cory has a primary diagnosis of ASD and is non-verbal, although a brilliant communicator using a customised talking device. He changed Christina’s life in many ways, including sparking a new career pathway within the disability sector. She says she is very proud to be his mum. Her journey with Parent to Parent started in 2012 when she requested an information pack around autism and how to obtain a diagnosis.

Parent to Parent September 2018

Once Cory had a diagnosis, Christina started attending the Hamilton coffee group. Wanting to ‘give back’ to the organisation and the families it supports, she then trained as a Support Parent, joined the Waikato branch committee, and in 2012 was employed as the Waikato regional administrator. Christina says she has made great friends along the way and met amazing families in the health and disability community. She is excited to begin a new role in the organisation and join the national office team.

Disability directory 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.

Phone 07 871 6410 Email info@enrichplus.org.nz Website www.enrichplus.org.nz

NZ Foundation Conductive Education

Adaptive Technology Solutions

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.

Discover a whole new world of communication, have more confidence and be comfortable using your computer, lap top, tablet or smart phone. Trusted and experienced we provide a wide variety of flexible technology solutions for people who struggle to use their computer, read print or who may prefer dictating rather than typing by offering assessments, training and support!

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

Phone 04 528 7600 Email genevieve@adaptivetech.co.nz Website www.adaptivetech.co.nz

Maximising the ability in disability

MAXIMISING THE ABILITY IN DISABILITY

Leading communication experts

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..

Arthritis is not just about older people. If your child has been diagnosed with arthritis, contact us now for free information, advice and support.

Phone 0508 236 236 Email info@carematters.org.nz Website www.carematters.org.nz

Phone 0800 663 463 Email info@arthritis.org.nz Website www.arthritis.org.nz

Learning and Wellbeing

Improving the life of every person affected by arthritis

Find out more about our annual Children’s Camp.

Parent to Parent September 2018

RG .N Z

N T. O

N T2 PA

OR RE PA

Peace of mind for parents Our new disposable ID wristbands offer immediate identification for lost children. Perfect when out and about or at an event for children inclined to wander. • Bright and bold for easy identification • Wear and dispose after use • Lightweight for those with sensory sensitivities • Tear-resistant • One size fits all

164497

If undeliverable please return to Parent to Parent, PO Box 234, Hamilton 3214