Contents 4 Foreword Helen Johnson - National President 6 Garry Hornby & Ray Murray The beginning in Auckland 7 Sally Duncan The first National Chairperson 9 Shirley Wass The first 20 years of Parent to Parent 12 The Journey Continues Parent to Parent 2003 to the present 14 Shelley Waters My journey with Parent to Parent 15 Gwen Sadler The beginnings at Nelson 16 Janice Gordon A local and national perspective 17 JulieAnn Johnson Parent to Parent in rural New Zealand 18 Susan Learmonth My journey with Parent to Parent 19 Christine Zander My story 20 Julie Burrows Memories of a Trainer 21 Mate Tapiata-Bevan Thanks from the Tapiata whanau 23 Nick Wilkinson The SibSupport N.Z programme
Š 2013 Parent to Parent New Zealand PO Box 234 Waikato Mail Centre Hamilton New Zealand Designed by Matthew Pryor Printed by NZPC, Hamilton
National Chairperson 1985 - 1991
Sally Duncan
Interim National President 1991 - 1992
Sally Duncan
National Presidents 1992 - 1993 1993 - 1996 1998 - 2000 2000 - 2004 2004 - 2013 2013 - Present
Janice Gordon Mike Ryan Kirstie Magowan Christine Zander Peter Campbell Helen Johnson
Life Members Ray Murray Linda Davies Janice Gordon Russell Wilkinson Ian Evans Heather Alford Shirley Wass Sally Duncan Gwen Sadler Christine Zander Helen Henderson
Patrons 1988 - 1996 1997 - 2007 2008 - present
Dr. Terry Caseley Sir Roy McKenzie (1922 - 2007) Rob Hamill
Chief Executives 1985 - 2003 2003 - Present
Shirley Wass Anne Wilkinson
1983-2013
President’s Foreword
From a Hangi to National President, Parent to Parent has had a huge influence on my life journey. My daughter Keri-Anne led me to the support door of Parent to Parent in the mid 1990s. I was a parent in denial and I fought the idea of having to rely on services and support agencies for help.
An understanding School Board of Trustees friend invited our family to a Hangi at our local school. “Cool that sounds like a new experience, I have never been to a Hangi before”, but little did I know, I was about to meet a network of lifelong friends. This small beginning led me to participating in many other family fun days. Swimming, barbecues, Christmas parties, ladies pamper parties, the annual Parent to Parent camp; all this involvement in Parent to Parent spurred me along to do the Support Parent and Advoacy training courses, with the intention of giving back to others the wonderful support Parent to Parent bestowed upon on me. Along the way I also used the Parent to Parent information service and as a Support Parent, I have been matched with a number of families.
I’m involved in. The Parent to Parent Support Parent training for many of us, was the grounding to becoming successful leaders in the disability sector, and our children are successfully participating in their communities. Parent to Parent’s support, conferences, training opportunities and networks have shaped our journey, and we have the privilege of unique and better lives. I have the privilege of being the current Parent to Parent National President. Parent to Parent has proven unique programmes, and is a very well respected national organisation. It is time now to celebrate 30 years of providing this unique and supportive service. I wish to acknowledge all those Presidents, Board Members, staff and parents who have come before me; through their insight and hard work they have paved the way for the success of Parent to Parent today. Helen Johnson National President
Looking back over the years I see the Parent to Parent network of friends and their families intertwined into most activities and organisations
JB Munro
(QSO)
Parent to Parent wish to acknowledge the support of JB Munro who supported the inception of our organisation back in 1983. No funding was available to start our organisation when the idea of a Parent to Parent service was first suggested. JB in his role as the then National Director of IHC, persuaded IHC to provide a grant of $5,000 to establish and promote the Parent to Parent service to other areas outside Auckland.
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Without his belief in our service, Parent to Parent would not be where it is today, 30 years later.
First Support Parent training course Auckland 1983
Shirley Wass at the launch of the new Parent to Parent logo
National Board Meeting Lake Tarawera 1993
National Office Staff Waiheke Island 2000
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Garry Hornby&Ray Murray
the beginnings in Auckland
The initial impetus for establishing a Parent to Parent service in Auckland came when Garry Hornby heard about a similar scheme while attending a Special Education conference in Perth Western Australia in September 1982. However, it is considered that the success of Parent to Parent in the New Zealand setting was facilitated by two important differences that were built into the Auckland service from the beginning. First, it was decided to involve parents of children with a wide range of impairments, including sensory and physical disabilities, rather than just intellectual disability, which was the focus of the Perth and Omaha services. Second, training in basic listening and counseling skills was made a key component of the training programme for Support Parents, in addition to focusing on information about services, and training in advocacy for children with disabilities. These two components helped Support Parents to feel confident andcompetentintalkingwithotherparentsandmadeitpossiblefor parents of children with a wide range of disabilities to be included, which ensured a broad base of Support Parents. In March 1983 a meeting was organised involving Garry Hornby (PsychologicalService),RayMurray(AucklandCollegeofEducation) and parents Robin and Rosemary Jones, as well as representatives of the various parent groups in the Auckland area, such as IHC, RNZFB, the Downs Association and the Federation of Parents of Deaf Children. Also included were a few parents who Garry and Ray knewthroughgroupparentprogrammestheyhadledwithparents of children with various disabilities. Of the 18 parents who attended themeeting,12agreedtobecomeinvolvedinestablishingtheservice. They also agreed to take part in a Support Parent training course led by Garry and Ray.
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The training course consisted of eight 2-hour sessions held weekly. Therewasonesessionofpersonalsharingaboutparents’experiences withtheirdisabledchildrenandanotherabouttheprocessofparental
adaptationtohandicap.Foursessionsweretakenupwithdiscussion and role play of basic counselling skills such as active listening. The final two sessions were on advocacy and referral sources. Following feedback from the parents who completed the first course it was decided to continue training with parents from a wide range of disabilityareas.Aslightlyrevisedcoursewasthenusedtotrainthree other groups of Support Parents during 1983. Garry led the second and third groups with different co-leaders, one of whom then led the fourth group with another co-leader. In this way a core of five professionals able to lead training programmes was formed. Also a revisedSupportParenttrainingmanualwasproducedbyGarryand Ray. At the end of the first year of operation of the service (1983) forty-two parents had successfully completed the training course. Thesewereparentsofchildrenwithawiderangeofdisabilities:deafblind;hearingimpaired;mentallyhandicapped;cerebralpalsy;spina bifida;multiply-disabled;epilepsy;cysticfibrosis;cardiacconditions; cleftlipandpalate;Downsyndrome;andparentsofdisabledchildren who had died. Atthesametimeasthetraininggroupswererunning,theorganization of the service was evolving, guided by a steering committee made up of parents who completed the first course. Funds had been raised to purchase an answer-phone and print a batch of posters and leaflets advertising the service. These were distributed in the parts of Auckland in which the parents lived and various rostering systems of the support parents were tried to deal with messages on the answer-phone. Funding was received from IHC to pay a parttime coordinator, Rosemary Jones, whose job it was to ensure that the scheme be soundly established in the Auckland area as soon as possible. Thus, by the end of the first year the service was fully operationalandwasreceivinguptotwocallsperweekfromparents requiring support. At this time Garry and Ray stood down from the committee so that it could be a parent driven organisation.
Sally Duncan
the first national chairperson
My involvement with Parent to Parent started in 1984 when I assisted with setting up the Tauranga group. I became the National Chairperson of Parent to Parent in 1985 and held this position until 1991 when I was interim National President for another year. It has been a pleasure to contribute to the establishment of the organisation and I am proud of what it has become over it’s 30 years of operation. I would like to share with you some of my memories of Parent to Parent, in no particular order! There have been some challenges along the way - one challenge that has never, and probably will never change, is funding. It was the recognition of Parent to Parent’s value by IHC that provided the financial support to start Parent to Parent back in 1983. An early conference in Christchurch comes to mind when talking aboutalackoffunding,wheremorningandafternoonteashadtobe provided. With the usual call out to family and volunteers, Shirley’s Auntyhadpreparedfoodforus.Itwasmyjobtorushoutandprepare thecorrecticecreamcontainerportionsofdelightfulgoodiesready for the breaks. Following this conference, many of the participants requestedtherecipes;thesehavestoodthetestoftimeasprovedby my well used recipe book. Many of us in the early days had no access to a typewriter, correction fluid or video conferencing - most of us had a telephone that could oftenberedhotafterlonghoursoftalkingwithothers.Thetelephone was a wonderful resource. OurNationalmeetingswereheldviatelephoneconferencing-thisis a testament to the organsiation’s ability to keep up with the times as thismethodofcommunicationwascertainlynotcommonbusiness practice in those days. How Shirley Wass ever typed up the minutes after these calls with 14 people connected is a mystery to me.
baked us a train cake that we had to very carefully transport from Tauranga. The drive from Tauranga to Cambridge was a very careful one indeed. The cake was an engine pulling the carriages that representedthegroupsthatwereoperationalatthetime.Itwasapity to cut it, but eat it we did. The hours that had been put into the cake really showed the support Parent to Parent received from families and volunteers. Often we had little gifts in our rooms on arrival at conference. At one conference in Nelson we all received a beautiful little pottery vase. I am aware that there are at least two of these vases that are in usetoday.AtthissameconferenceIrecalltheNationalCo-ordinator beingquiteanxiousthattherewasnotenoughtimetogetthroughall the items on the agenda before planes departed.This was probably because many of the delegates had taken to the local markets to buy presents for their families that they had left to cope at home for the weekend. When I have asked around for thoughts from others about 30 years of Parent to Parent, and here are some of the things I have heard: “The friendships made, that still continue on” “MakingachoiceofthelogothatwastotakeParenttoParentintothenew millennium - and it’s still there in 2013” “FeelingsoproudwhenIwatchedaneighbourpaintoneoftheParenttoParent signs”
Celebrating 30 years AnotherconferenceheldinCambridgecomestomind.Anenthusiastic supporter of Parent to Parent, Mrs Wilkinson of Welcome Bay,
“Being part of the first and second siblings camps in Tauranga” “IwishIknewaboutthesupportParenttoParentoffered,Icouldhavedonewith that years ago”
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Abbie Meyers
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ShirleytheWass first 20 years Who could ever have envisaged that we would be meeting to celebrate the 30th anniversary of Parent to Parent New Zealand! The support, energy, excitement, and challenges that have been faced over the last 30 years, show how resilient this organisation is.
the first National Coordinator and Sally Duncan became our first National President. I was employed for 5 hours a month. As the organisation began to grow, the spare bedroom at home was replaced by an office offered to us by the CCS Waikato. IHC nationallycontinuedtofinanciallysupporttheorganisationwithinkind donations and a grant.
From small beginnings in 1983 when the first group was set up in Auckland offering parents telephone support, to now where 1986sawthesecondnationalgatheringbeingheldinTaurangaand support is being offered in so many different ways, to all members minutes of the AGM showed a financial balance of $760.99. It was of the family. Pausing to look back we realise that empowering atthismeetingthattheobjectivesoftheorganisationwereadopted parents through support and information has resulted in new along with the membership criteria. There was now a total of 65 members embracing the values of the organisation and becoming trainedSupportParentswithgroupsoperatinginAuckland,Waikato, the next generation of supporters. Without Central Otago, South Canterbury, North Otago, As the organisation began the dedication of the very first volunteers this Manawatu, Tauranga, and Whakatane. IHC to grow, the spare room at generouslyfinancedtheairtravelofdelegatesto organisation would not have survived. In 1983 there was no funding available to start home was replaced by an this meeting. Our logo at the time was a speech bubble and in 1987 we were able to formally up an organisation so the organisation was very office offered to us by launch our Parent to Parent National pamphlet fortunate to gain the support of J.B. Munro, CCS Waikato for all groups to use. then National Director of IHC who persuaded IHC to help fund the promotion and establishment of Parent to Parent groups outside the Auckland area with a grant of $5,000. This was to be carried out by the part-time Auckland Co-ordinator Rosemary Jones. By 1985 Auckland was joined by groups in Waikato, Tauranga and Manawatu. It was decided to hold a national seminar to formalise the establishment of a national organisation and in May 1985 a national coordinating committee was set up comprising an equal number of representatives of each recognised group. I was elected as interim convenor of this committee which was charged with the setting up and running of Parent to Parent as a National Body. In August that year I was formally elected as
I continued to apply for funding to every outlet I could think of and we were fortunate to be able to establish a national lending library for parents, produce our first national newsletter and have 88 trained Support Parents covering over 60 different conditions. We had outgrown our office space and moved into the Disability Resource Centre in Hamilton. The AGM of 1988 saw representatives of each group elected as a national committee, and our first Patron, Dr Terry Caseley appointed. GroupshadbeenestablishedinBlenheim,Christchurch, Dunedin and Wellington. The publicity had spread and we were growing fast.
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At the invitation of IHC I attended the TASH conference inSanFranciscoandwhiletherewasabletovisittwoParent to Parent “type” groups. This resulted in networking opportunities between the USA and NZ to begin. By 1990 the office had relocated to Cambridge and local groups were asked to contribute annually towards the cost of national matching. Funding allowed the National Coordinators paid hours to be increased to 30 per week and there was now 14 groups operating throughout the country with 199 trained Support Parents covering 147 different conditions. A big achievement in 1991 was having enough funding to employ a clerical assistant for 10 hours a week. This was such a relief as the workload was becoming huge. I was fortunate to have the support of two volunteers who came into the office to work for free, they were my rocks when things got so busy and I was away around the country talking to various groups of parents.
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National Board - 2000
International networking between NORD (National Organisation for Rare Disorders, USA), MUMS (Mothers United for Moral Support, USA) AGSA (Australasian Genetic Support Association, Australia) and CAF (Contact a Family, UK) and Parent to Parent New Zealand were established. This meant that families who we were unable to match in NZ, now had the opportunity of an international match with a family. Extremely exciting times for these families.
Over the years we were able to spread the word about Parent to Parentthroughvariousmedia.CranmerMaternitypacksweregiven to 56,000 new parents each year and they graciously allowed us to include our pamphlet in that pack. Radio NZ’s future indicative national programme approached me to do an interview and this resulted in a huge increase in calls. We were also fortunate to be interviewed by the Readers Digest and this resulted in our oldest caller aged 75years.
The following year, Janice Gordon who was a national committee member, and myself attended the International Parent to Parent conference in Washington DC, then travelled onto England to meet with Contact a Family, and the Research Trust for Metabolic DiseasedinChildren.Thesenetworkingmeetingswereinvaluable.
The national committee set up a Maori Advisory committee called Te Upoko in 1995 to promote Tiriti o Waitangi and all aspects pertaining to Tino Rangatiratanga. In 1998 membership was cancelled as there was no support for a separate arm of Parent to Parent being formed for Maori parents at the time.
1993, 10 years after the establishment of the first Parent to Parent groupinNewZealand,theorganisationbecameincorporated. The nationalofficedatabaseofallsupportparentsinNZwasestablished and this allowed faster matching of families and recording of details – gone were the handwritten cards for each call. By 1994 the organisation had managed to get funding to employ the national coordinator full time.
Funding for the national body was still difficult to obtain but significant progress was being slowly achieved. The JR McKenzie Trust and Sir Roy McKenzie our Patron enabled us to achieve projects nationally with financial and in-kind support. Lottery Welfarebecameoneofourmostsignificantfunders,bothnationally and locally for groups. Their continued belief in the work that our groupsweredoingcertainlymadeallthefundingapplicationsworth
Celebrating 30
it. In 1996 our first national contract with the then Regional Health Authority was signed. This was for the provision of core services, matching,informationandSupportParenttraining.Wefeltthatthe healthsectorhadfinallyacknowledgedtheworkthatourvolunteers were doing in supporting families. As the sector began to change and more accountability for grants was required, Parent to Parent sought Donee status and was given this. The Affiliation document between the national body and local groups was formalised and organisational documents were developed. By 1998 we had funding for 27 hours a week for national office staff. The rest of the hours that sometimes needed to be worked were“volunteered”.The staff were dedicated people who truly believed in the organisation.
includedSiblingprogrammesandthesebecameasignificantform of support for siblings who were known to Parent to Parent. Between 2000 and 2003 the organisation continued to go from strength to strength. Anne Wilkinson the then National Services Coordinator and myself attended the NZ Disability Leadership gatheringinAuckland;thenationalwebsitewasdevelopedwiththe help from funding gained from The Tindall Foundation; and the Parent to Parent sibling programme was featured on an Inside Out televisionprogramme.Thenationalcommitteechangedtobecome the National Board reflecting their changed governance role and the national coordinators role became the Chief Executive Officer. National coordination of Support Parent training was introduced and SibSupportN.Z. programmes were delivered throughout NZ. Don Meyer, director of the sibling support project in Washington DC was invited to NZ and he delivered 2 two day workshops in Wellington and Hamilton.
I was fortunate to obtain funding to attend the international Parent to Parent Conference in 1998 and this was held in Atlanta. I was invited to speak on the‘national’model that we had established in NZ as the groups in the States did not have a Parent to Parent had been working closely with During my journey I national structure as such. I came away feeling several other national parenting organisations proud of what we had achieved here in NZ and have...been in awe of andin2003theParentingCouncilwaslaunched knew that the seeds had been planted for other what parents can and do at parliament by the CEO’s of Triple P, Stephen Parent to Parent groups in the US to look at a Hayns; The Pacific Foundation, Leslie Max; national structure. Prior to the conference I achieve for their children Parenting with Confidence, Ian Grant; Parents had spent 3 days at the Beach Center at Kansas Centre, Sharron Cole, and myself representing Parent to Parent University with Rud and Ann Turnbull and their team who very NZ. I felt very humble when Sir Roy McKenzie our Patron at that generouslysharedtheirknowledgeandresearcharounddisability time, attended to support Parent to Parent. andparenting.AfterconferenceIflewuptoWisconsintospendtime In July 2003 I made the decision to resign as CEO and pursue work with Julie Gordon of MUMS. Julie and I had been matching families in the private sector. During my journey with Parent to Parent I internationallyforseveralyearsanditwasgreattoseehowsheranher have met wonderful people, listened to some tragic stories, been matching service. in awe of what parents can and do achieve for their children, Later that year I was approached to support and advise on the walked alongside our volunteers and Support Parents as they gave establishment of Parent to Parent in Queensland, Australia. The so willingly of their time, proudly watched as our Coordinators national committee approved the sharing of our template for the matured into their roles, and sat at the Boardroom table with those database so the group could begin and I flew across and spent time thatwantedtogovernanorganisationthatweallcouldbeproudof. with Julie Simpson showing her how to use it. As Parent to Parent continues to grow and flourish I am proud of As Parent to Parent had continued to branch out on providing this organisation and wish you well for the next 30 years! services an alliance was formed with NZCCS to deliver the Health Funding Authority Training Programme for Informal Carers. This
years
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The journey2003 continues - 2013 Parent to Parent’s journey has continued, and the organisation has seen much growth over the last ten years. Anne Wilkinson took over the reigns of CEO from Shirley Wass. By 2004 National Office has a staff of 5 FTEs and there were 540 Support Parents nationally. Parent to Parent worked with Imagine Better and CCS to organise the Coming of Age conference which was a celebration of Parent to Parent’s 21st anniversary. The following year SibSupport facilitators Nick Wilkinson and Grant Morris were invited to be key note speakers at the inaugural SiblingsAustraliaconference.Wecontinuetohavestronglinkswith organisations supporting siblings in Australia and have assisted AGSA to develop their programme based on SibSupportN.Z. Following a massive increase in the number of requests from familieslookingforsupportfromaSupportParentandinformation, the national database was upgraded and rolled out to regional coordinators for local matching in 2006. A national server giving access to all staff around New Zealand was also implemented. In 2007 Parent to Parent and Life Unlimited were awarded a Ministry of Health contract to provide an information and advisory service for Autism Spectrum Disorder. Our partnership developed the Altogether Autism information service, which is offered in conjunction to other Parent to Parent supports. Within twelve months approximately half our information requests were for autism.
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It was at this time that we partnered with the Starship Foundation andTelePaedsNZandwiththegenerosityoffinancialsupportfrom Helen Henderson video conferencing was introduced to Parent to
Launch of the video conferencing facility Parent offices throughout the country. Video conferencing is used for training and support of volunteers and staff and for families throughout the country to connect. Sibling facilitator, Nick Wilkinson presented a paper on SibSupportN.Z. and CEO Anne Wilkinson presented a poster display on Altogether Autism at the Pacific Rim conference in Honolulu in April 2008. Later this year we again worked with Imagine Better to organise the Trusting Partnerships conference. The international speakers were Ann and Rud Turnbull who helped set up Parent to Parent in the USA and Michael Kendrick from Canada. Atthe2009AnnualGeneralMeetinganeworganisationalstructure and Constitution were adopted. This changed Parent to Parent’s membershipfromregionalgroupsasawholetoallSupportParents as individuals. Also, around this time our newest group, Parent to Parent Otago was formally established.
The first Second Generation workshops were trialled in 2010. OnceagainweworkedwithImagineBettertodeveloptheweekend workshop for adult siblings. Following these two workshops it was decidedtochangetheformatsothatparentscouldattendwiththeir non-disabledsiblings.SecondGenerationcontinuestobedelivered by Parent to Parent and Imagine Better and has become one of our most sucessful and sought after trainings. CEO Anne Wilkinson traveled to Denver in 2011 for the Parent to Parent USA Leadership forum. While there she visited several state-wide Parent to Parent organisations, some service providers andtheBeachCenter atKansasUniversitywhereshe was hostedby Ann and Rud Turnbull. The following year when we introduced an appeal day during our Awareness week in August, and held a very successful major fundraiser – an evening with Nigel Latta. Parent to Parent entered the realm of social media, which has become a primary vehicle for promoting our services, and connecting with families
The first sibling leader training group
Over the past year Parent to Parent has had over 3,600 requests for information and/or a match with a Support Parent, and provided 19SibSupportprogrammesandparenttrainingcourses across the country. The organisation has 572 trained Support Parents and 55 sibling leaders and facilitators.
National Conference - Timaru 1996
Don Meyer visits New Zealand
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ShelleymyWaters journey with
parent to parent
My name is Shelley and my husband Jeff and I moved from Christchurch to Hamilton in 1997. I had joined the Waikato Down Syndrome Association and became friendly with one of the other mums, who explained to me what Parent to Parent was all about and encouraged me to attend the local group’s AGM. I attended and was really impressed with the concept of getting parents together and the work that Parent to Parent did, so agreed to becoming a committee member on the local Committee. I really enjoyed being part of such a great organisation. It was neat tomeetother familieswhosechildrenhaddifferentdisabilities and to realise it didn’t matter what special need your own child had, the majority of parents who have children with special needs all relate to each other and understand what each other is going through. I immediately signed up for the next Support Parent training and becameaSupportParent. IalsostartedattendingtheCoffeeGroup, which was held monthly at one of the mum’s houses. The group always had such a nice atmosphere and was a great mechanism for support. During our time in Hamilton, I began working for Parent to Parent in the National Office as a Matching and Information Officer. This was my first job after being a stay at home Mum for four years. The National Office was a well run ship, led by Shirley Wass. The staff were so welcoming and it was great having contact with families from all over New Zealand. What a great way to rejoin the workforce! My husband was then transferred back to Christchurch with his job, so unfortunately I had to leave my job in Hamilton. The Christchurch Branch of Parent to Parent had been in remission for some years, but National Office decided to try and get it up and running again and tasked the Timaru Co-ordinator, Bev Bennett, with taking on the role of raising the profile of Parent to Parent in the Canterbury Region. Bev had a great capacity of getting families together,andtogetherwithanewlyformedCommittee,managedto
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get Christchurch back on track. I joined this Committee as soon as we shifted back and, once again, loved the interaction with families whose issues were similar to my own. The Committee were all dedicated to Parent to Parent, and helped support families in the region really well. The call came for nominations to the Parent to Parent National Board. The Canterbury committee nominated me and I was elected. What a learning curve that was. I was so impressed by the commitment all the Board members had, and the way the organisation was run, and felt it was a real privilege to be part of such an organisation. I was on the National Board for the maximum term of six years and during that time saw the organisation grow from strength to strength. I am no longer on the local Committee, due to other commitments, but am still a Support Parent and still value what Parent to Parent does, and the way they help and empower families. One of the greatest achievements for Parent to Parent was being able to introduce the use of Video Conferencing. This opened up a great way of communication for Support Parents and families, allowing them face to face interaction, if they required this, rather than over the phone. Through Parent to Parent my confidence has grown. I have spoken on behalf of Parent to Parent on a number of occasions as both a representative of the local Committee and as a National Board Member, to various organisations. I was definitely not a public speaker, but the opportunities I have had through being involved with Parent to Parent have given me skills I didn’t think I had. I’m so pleased to be part of such a great organisation and think it’s wonderfulParenttoParentarecelebratingtheir30thAnniversary– whatafantasticachievement,andIfeelveryproudandhumblethat I have played a small part in its history. Well done Parent to Parent!
Gwen Sadler beginnings in nelson
One day, in early 1980s while listening to Radio NZ, I realised that I was nodding in complete agreement with a speaker who was Shirley Wass. Shirley was advocating for the formalisation of support and information which could be found in groups of parents of children with special needs. Experience in the first of the IHC pre-schools for children who were denied early childhood education, in Christchurch, had proved for me the mutual benefits of such friendships. Later, as an employee of the local hospital board, working in the area of family Mental Health, we held a special day programme for siblings of children with developmental difficulties. This day was transformational for my two sons’ only sister who was fascinated by the fact that others, who were “real cool” had other sorts of difficulty in their every-day lives. So, it was a foregone conclusion that I would be involved when Parent to Parent began in Nelson. One of our first goals was to form a group that could break down the loneliness of those coping with the demands of a life full of unexpected complications.
“Yes, lets!”was our loud (learned) response.The Network did make a huge difference in the family lives of those participants. Today, I marvel at the breadth and scope of Parent to Parent, the precisionofdiagnoses,theeasyavailabilityofmatches,thepackages ofinformationsupplied, theworkwithSiblingSupportandSecond Generationandmuchmore. Parentsthemselves,andtheworkthey undertake to give their child meaningful community contacts and an ordinary worthwhile life, are especially inspirational. Seeing parents grow in strength and confidence through their challenges has been one of the pleasures of my involvement in this organisation.
These were pre-internet and texting days when the telephone was our lifeline. We held residential weekend retreats where we practised communication skills and learned to talk about our fears. All of us delighted in having two full days, catering provided, in an environment conducive to relaxation and enjoyable new learning. Trudy Mackay (1952-2002), a local psychotherapist, lead us with a light-hearted and sure touch. We wrote names for our feelings on balloons and let these be upheld on a network of interconnected stringheldbyparticipants.Wemadeatelephonetreeandagreedto telephone at least one member of the group in the following week.
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Janicea local Gordon and national
perspective
As a parent of a child with a disability, the idea of Parent to Parent was suggested to me by John Doolan (Administrator for IHC Manawatu) as a way of supporting parents of children with different disabilities. I met with JB Munroe who was head of IHC; he wished to empower families with this programme and encouraged myself and others with his support. At that time I was attending a coffee morning for the mothers who were being visited by the‘visiting therapist’through the hospitals. This became the initial group and later the steering committee. After much discussion and resources from Rosemary Jones in Auckland, the programme was delivered in Palmerston North with the support of Parentline. CCS Manager Paul Curry supported the programme with funds and a staff member. The coffee mornings were moved from private homes to the Toy Library.
After the first training programme was held, it was discovered that notallattendeeswishedorcouldbecomeSupportParents.However the course material provided excellent information for parents to assist them with their child and family needs, understanding the grief process in relationship to disability was found to be most helpful. From this the grief luncheon was created. Local grief councillors Win Rockall and John Hornblow facilitated seminars for families once a year with sponsorship from local trusts. Parents and professionals were welcome to attend and stay for a sumptuous lunch.This was important hospitality and allowed the groups to mix and mingle, share the information, and support oneanother.JoanDanielsbecamethetrainer,andofferedvaluable training and supervision to the co-ordinator and Support Parents for many years. I decided to run a family camp for families living with a child with special needs.The aim was to support the family by them being one
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of many who had a child with unusual behaviour and equipment. Theparentsmixedandmingledaroundvariousactivities;attheend of that camp a strong group of happy people left with a shared understandingofeachother’sneeds.Thisgroupwastobecomethe strength of Parent to Parent for many years. A sibling programme was introduced with professional support from a psychologist and a social worker, Sue Gates and Jane Brooks. As an outcome two siblings became national SibSupport leaders. Asthegroupdevelopedwediscussedandwereveryinvolvedinthe education system and establishing the‘Mainstream Programme’. Parentsfoundtherejectionfromschoolsandcommunitydifficultat times.ParenttoParentbecameaplacewheresupportandstrength in numbers could be found. My local primary school in Milson was not welcoming to children with special needs. I decided to hold a family day/Hangi in the school grounds on a fine weekend and invited the school principal to attend. The principal was totally unaware of the numbers of children attending his school who had siblings who also wished to attend this school. His attitude took a complete U turn that day andhebecameastrongsupporterofmainstreamingandproviding support for the families. Many of the parents including myself found their way into adult education. A few have now graduated and are working in a variety of professions. One of my greatest joys has been to meet a parent in a professional role later in life and see the impact they are making for the disability world. Many of us from the first camp have travelled and attended conferences overseas and in NZ. My first OE was to the USA and UK as National President. I attended the International Parent to Parent conference in Phoenix Arizona and NORD conference in Washington. One workshop I attendedwason‘humouranditsrelationshiptomentalhealthandwellbeing’,
Celeb
and another was‘eugenics’with US medical insurance companies wanting to prevent births of some people with predisposed conditions. These workshops had an impact on me, and made me want to ensure families had fun and valued lives. Educating professionals became an important part of our programme,offeringpanelstonursingstudents,teachersandsocial workers through the local tertiary providers. In return we had many student volunteers as helpers at our family camps and days.
JulieAnn Johnson
This was a time of great change with deinstitutionalisation and mainstreaming. New Zealand was ahead of the process in many ways,oursizeandabilitytoembracechangemadeusworldleaders. At this time organisations such as IHC put a huge amount of resources into the training of parents to advocate for mainstream services and the rights of people with disability to live in their communities. Parent to Parent was very much part of the process of supporting parents for choice.
Parent to Parent New Zealand has changed my life. Living rurally with a disabled child is challenging for medical, social and support networks.
I chaired the family support working party for the ‘Service DevelopmentReport’forPalmerstonNorthHospitalBoard.This1988 report paved the way for the closure of Kimberly Hospital and the resettlement of residence into the community. It took eighteen yearstoimplementtheserecommendations.Itookmydaughterto the function at the Beehive in Wellington to celebrate the closure.
The Greater Canterbury region was extremely fortunate to have Bev Bennett as the co-ordinator. Even the first phone call to Bev was a milestone for me to reach out for help. The walls of isolation fell away as I made contact with a Support Parent that helped me through my concerns of ORRS funding and schooling. A few years later I joined the Greater Canterbury committee and am now the Chairperson of a fabulous and energetic team.
In my role as National President in 1992, I was member of a ‘Consensus Development Conference Report to The National Advisory Committee on Core Health and Disability Support Services’, this was the foundation to service development and standards, the Health and Disability code . As we developed a family support model, I was invited to speak at Beasleyinstituteconferencesaboutfamilycamps.Theprogramme was now extending into other parts of Parent to Parent along with family days.The service model was unique to Manawatu although other areas did offer some face to face service. In time, the Parent to Parent paid co-ordinators role changed to an organisationalrolenationally,wheretheiremploymentfocuswasin providing and growing the matching and information service.
When Patrick was diagnosed with an intellectual disability we felt the common feelings of confusion, grief, guilt and anger. Thanks to the GSE teachers who worked with Patrick in our home during his preschool years, I was encouraged to contact Parent to Parent.
With the assistance of Presbyterian Support and Parent to Parent we started a support network for the rural families ‘ConnectingFamiliesLivingwithDisabilities’.Nowweregularly have events and functions for the parents and families living in our area. There is a much laughter, stories and advice being shared. Following the Support Parent course in February, I hope to assistotherparentsbraveenoughtomakethatfirstcalltoParent to Parent. Thank you Parent to Parent New Zealand!
brating 30 years For myself and our family, Parent to Parent gave us a group where we could enjoy the journey as an adventure not a tragedy.
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Susan myLearmonth journey with parent to parent
I was introduced to Parent to Parent Manawatu by a visiting therapist who encouraged me to attend one of the monthly coffee mornings. I began to go along when I could. At times, it was a challenge to get myself and the two little boys ready to be at the venue by 10am. A toy library was available at these sessions which proved very popular for my younger son. It was through the toy library that I was able to borrow a standing frame for my special needs son, Ryan, to try out. When this frame proved beneficial for Ryan, one was ordered to use at home. One day, I received a phone call from the local branch Coordinator, Janice Gordon, encouraging me and my family to join in with others at a family camp which was to be held at El Rancho in Waikanae. My first thought was “no, I can’t do that, it’s just not possible” because at the time I was on my own with 4 children, as my husband was away for 2 years working in Wellington. After some thought, I decided we would give it a go and that was the best decision I could have made. The camp was a success, the children were given the opportunity to do many activities that they had never experienced before and I was amazed at just how supportive and helpful other parents were towards our family. After this eventful weekend at camp, we began to become more involved with the group’s activities. Families belonging to the local branch would meet on a regular basis and play ten pin bowls and eat pizza for tea, have picnics and barbecues at local parks or animal parks, see a live theatre show or a movie, then have a meal at McDonald’s which the kids especially enjoyed. These events allowed the parents time to share and support each other.
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Annually, the branch organised a Sibling Day which involved doing art or ceramic work and a Sibling weekend at Camp David. We participated in a couple of car rallies, which were a lot of fun, with a few people getting lost, but a great way to spend a Sunday afternoon with the bonus of a delicious tea at the end of the rally. There were also separate activities for mums and dads – mums would have a movie night, a pampering evening, or one special time was attending the Tina Turner Concert in Palmerston North. Dads also had days out doing team building activities like bridge swinging or golfing. In 1995, I stepped into the role of Manawatu Coordinator of Parent to Parent, a position which I held for 10 years. Since joining this support organisation, I have had tremendous opportunities which enhanced my personal growth. I attended many conferences and workshops around the country and met many people. As a result, I have made life long friends, all through being involved in the disability world. I would encourage people to get involved in a support group. It’s a great way to meet others who are coping with similar experiences, to share information on disability, health issues and the services available. Ten years ago, my role as a caregiver of a child with special needs unexpectedly ended when my darling wee man Ryan passed away on 12 April 2003 at the age of 16. My journey with Ryan may now be over, but I will always be the mother of a special needs child who remains forever young in my heart. To this day, I am actively involved with other disability organisations. This path is a legacy chosen as a result of Ryan and his accident. I am forever thankful to all the wonderful people I have met through Parent to Parent, and for their love and support during this special chapter in my life.
Chri stinemy Zander story It was 26 years ago when my life changed. To this day I am still learning the lessons that my daughter Natasha gives me. My strongest memory of those early years was when I first met other parents living with disability. Natasha was only a year old and we had been given a diagnosis of developmentally delayed (really meaning intellectual disability) and CP. Over the years the list has grown. After a time it is not the diagnosis that I focused on but what I could do to improve Natasha’s quality of life and also our families. My experience of having a child with special needs has been more then challenging over the years.The hardest issue to deal with was the lack of support and understanding from my family. I got my support from the other parents that knew what living with Natasha was like. Parent to Parent became my disability family. I developed strong relationships with a number of parents within our region. When my husband left they were so supportive and I remember Jenna, Natasha’s twin sister saying we are going to‘kid to kid’as we head off to one of the many day outings that were organised. As a single parent it was hard to take the kids away for holidays. A group of Parent to Parent parents went camping over the Christmas holidays. This was a way to share the challenges. The family camps were another way of giving my other children a holiday but also a chance for them to meet other kids who live with disability. The emotional support that Parent to Parent gave me over ten to fifteen years was a life saver. I was encouraged to take up study at university which I did and now I work in social services. I felt that because I received so much from Parent to Parent that I wanted to give back. I was on the local committee for years as well as being local president, and then I was elected as National President,
a position I held for five years. I became a trainer and enjoyed supporting the National organisation. As National President I met with some amazing people, I learnt so much. All I had to give was my time but the organisation has just given me so much more. Now I have one daughter Kylie, married with a beautiful two year old and another one on the way, and is so supportive of Natasha. Jenna is to be married next year and helps with the Parent to Parent Sibling programme. I have re married and Stuart is great with Natasha who still lives with us. Natasha has had her challenges over the years and has more to overcome. I am so proud of the way that she meets life head on and always with a smile and a hug. I would like to thank Parent to Parent on behalf of my family for all the support and understanding, you all are amazing.
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Julie Burrows memories of a trainer
When Gwen Sadler asked me to co-facilitate a Parent to Parent training course for parents with her in October 2005, my first thoughts were that walking in the footsteps of Trudy McKay (the previous facilitator) would be a very hard act indeed to follow. My next thought was that, although I had been a social worker for parents of children with a disability, would I have the information and knowledge I needed to do this course well? I need not have worried. Gwen guided me through each planning step, and the standard of the course guidelines, resources and information available from Parent to Parent were the best I had seen. The women on the course were eager to learn how to be Support Parents and very forgiving of any nervousness or mistakes on my part. My first course with Gwen was in Richmond, starting on a Friday night with an introduction, and then two full days of training. The parents joined in the group exercises with enthusiasm. They contributedtodiscussions,makingeachpartofthecourseasmuch a learning and rewarding experience for me as it was for them. I remember well the sections on giving support and about grief. Thereweretears,laughter,andacceptancefromalltheseincredible women, and I found myself talking about what it had been like for me raising a child with ADHD long ago, before it was even recognisedasadisability,andsomethingthatmothersinsomeway were held responsible for. Another course I remember most was at the Bridge Valley Camp in Brightwater, out in the country along a very dark and winding gravel road. It was in June, not the best time of the year for a livein course.When we all eventually arrived at the camp, we were cold and hungry. Some parents hadn’t eaten, mistakenly thinking that a
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meal would be provided, but the camp didn’t have anything to eat until the Saturday morning. Not to be defeated, two parents set off again down that road, while the rest of us settled in. With Gwen being an expert in fire making, we soon gathered around a roaring open fire, and we talked about life while we waited for the fish and chips to arrive.The course went very well, apart from blowing a fuse that couldn’t be fixed because all the column heaters were set in a circle around the room to keep us warm. So it was back to the fire, with Gwen making sure it greetedusearlythenextcoldmorning.Noteveryparentpassedthe courses, with most deciding that the timing wasn’t right for them, and some even returning for the next course. Such determination and commitment towards helping others from those who already had busy and sometimes stressful lives themselves. I also went with Gwen on two Train the Trainers courses in Hamilton,whereImetwonderfulpeople,learnednewandexciting ways for training, talked until the small hours, and returned home eager to try out what I had gained. The video conferencing units were also a new, mysterious technology, but what a wonderful way to keep in touch from all around the country! I had to reluctantly give all this up when my hearing began to fail, and I couldn’t work out what was being said within group discussions anymore. I knew that the timing wasn’t right for me and I couldn’t do justice to the work. What I miss the most though, are theparents,thosewonderfulwomenandmen,thatmakeupParent to Parent. And that’s what it’s all about really, isn’t it?
Celebrating 30 years
Mate Tapiata-Bevan
thanks from the tapiata whanau
Congratulations Parent to Parent for reaching this milestone, the Tapiata whanau send our tautoko & celebrate the operation and functioning. Our whanau involvement with Parent to Parent is based around our three children who have Down Syndrome. Hoani Nawaia Tapiata is now 22 years old and living in his own Council flat, and he has support wrapped all around him. We all spend Friday night together having Fish and Chips, or whatever he is happy to pay for. Te Whenua ki Paerangi Tapiata is now 16 years old and waiting for her chance to move into her own flat too. She attends Freyberg High School, in the Craig Centre He Puna Tautoko unit, and hates missing school. I acknowledge Horiana Powhiri Tapiata (passed away at one year old). She would have been 15 years old had she survived.
Parent to Parent have allowed our whanau space to develop our own unique identity, coping with the challenges that we were to face. Whether it was helping Special Education Services to cope with Maori speaking whanau who wanted Maori speaking staff to attend Kohanga Reo and Kura Kaupapa Maori, or representing Parent to Parent Manawatu on the National Committee, the interaction and challenges have been many. Janice and Mike Gordon – you introduced my whanau to Parent to Parent Manawatu and as my whanau have aged, I acknowledge the graceful aging that you have both undertaken too; wear it with pride. Welcome to Grandparenthood, thank you for guiding our family through. It made our lives a little bit more bearable Heoi ano, thank you Parent to Parent.
Horiana, Te Whenua and Hoani have Down Syndrome and are three of our seven children. Their biological father Lorry and I have separated now, but he remains involved with all of the children. The statistics of single or separated families within Parent to Parent must remain high, this is indicative of the extreme pressure that we all share and try to balance. Be strong – Kia Kaha tatou. Parent to Parent were pivotal in allowing our whanau time to gel together while growing our young whanau. My new husband has learnt that our whanau combination is how ‘we’ roll. This is the package and what we consider normal. The family camps at Camp David, barbecues at Ashurst domain, Parent Coffee Mornings and many hui planning were all part of building a dynamic region. I look at some of the parents who have since moved on and celebrate their commitment and drive to their children
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Celebrat
Nick Wilkinson the sibsupport programme In March of 1995, I was asked if I was interested in attending the very first SibSupport.N.Z. programme which was to be held in the Waikato. It was to be a weekend for siblings aged 8-18 of people who had a disability. The weekend would be a time for kids to have a chance to go to a camp and partake in the usual activities you would expect as well as workshop sessions run by a psychologist who would lead discussions relating to common issues faced by siblings in their unique situation. Being a typical teenage boy who wasn’t particularly interested in sharing my feelings, I reluctantly agreed to attend. While I expected to enjoy the kayaking, rock climbing and other activities on offer, what came as a surprise to me was that the most memorableandengagingpartoftheweekendweretheworkshops. It was the first time in my life where I was able to talk about issues I faced with other siblings who were in the same situation as I was.
then, the programme has been run throughout New Zealand and I have facilitated over 50 SibCamps and SibShops and even spent a fewyearsworkingatNationalOfficeadministeringtheprogrammes. Today, Grant Morris and myself run a Sibling Leaders Training and a Facilitators training. It’s humbling to see many of the people we metas8yearoldsgrowanddevelopthroughtheyearsandwanting to return to give back to the programme that gave them so much. All of our leaders and facilitators are siblings themselves and most of them attended the programmes as children. SibSupportN.Zcontinuestothriveandgrow.Ithasanexcitingfuture and I feel honoured to be a part of such an amazing programme.
The original psychologist suggested that siblings were in the best position to run the programme as they had lived through what the attendees were going through. Given that I was one of the older siblings on the programme, the following year I was invited to attend as one of the first “Sibling Leaders” and assisted Grant Morris another sibling who took on the role of Facilitator as it was suggested. The program ran in the Waikato for several years and was always a highlight for me. I made many life long friends in those early years that I am still in contact with today. In 2001, through a Ministry of Health contract, the programmme was able to extended beyond the Waikato and I was invited to facilitate the first SibSupportN.Z. programme in Dunedin. Since
ting 30 years
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