DECEMBER 2014 (REVISED JUNE 2014) JUNE 2016
NETWORKER SUPPORTING PARENTS AND FAMILIES OF DISABLED CHILDREN AND YOUNG PEOPLE
NETWORKER TOPIC: COMMUNITY NARRATIVES LIVED EXPERIENCE OF DISABILITY
Networker June 2016 Welcome to this June edition of the Networker magazine. In this edition we celebrate community narrative - stories from individuals with a disability, parents, grandparents and siblings. It is always interesting to hear other peoples’ perspective on disability and the challenges they may be facing, as well as the successes they experience. We are lucky that so many families have shared their reflections of their journey with us. By sharing these personal stories readers may be inspired, motivated, amused – or simply gain useful insight to another person’s experience of disability, and how they have adapted. Included in this edition is information on our seminar dates and venues for the remainder of 2016. To book please contact us. And remember our Transition Expo 2nd August where families can visit the various stalls and gain information on post schooling options for a school leaver with a disability. Please also feel welcome to come along to our Annual General Meeting on 17th August at 6pm here at our Disability Connect offices. Make a hot drink, get comfortable and enjoy this edition of the Networker. Lisa Martin CEO, Disability Connect.
Top L-R: Gabi, Virginia, Lisa, Angela, Tingting Bottom L-R: Robyn, Asoka, Sanny
STAFF MEMBERS Lisa Martin – CEO Virginia Desai – Financial Administrator Gabi Zündorf – Information Advisor Sanny Chan – Community Disability Cultural Advisor Asoka Gamage-Mendis – Community Disability Cultural Advisor Robyn Hoffman – Information Advisor/Office Assistant Angela Walter - Social Worker Tingting Zhang – Community Disability Cultural Advisor
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Disability Connect would like to thank Foundation North for their funding contribution for this edition of the Networker magazine.
BOARD MEMBERS Colleen Brown – Chairperson Sharon King – Secretary Wendy Duff – Treasurer Laraine Hand Tim Sutton Anne Martin Martine Abel Heather Madill
@disabilityconne
DISABILITY CONNECT (PARENT & FAMILY RESOURCE CENTRE INC.) 3b Olive Road, Penrose, Auckland P.O. Box 13385,Onehunga, Auckland 1643 09 636 0351 - 09 636 0354 admin@disabilityconnect.org.nz
WWW.DISABILITYCONNECT.ORG.NZ
CEO'S REPORT
CHAIRPERSON'S REPORT
It has been such a busy six months here at Disability Connect since our last Networker magazine. Our staff has grown in size – we now have 8 staff members in total. It’s always good to put a friendly face to the name so have a look at our staff photo on the front page of the magazine. Sanny Chan our Cultural Disability Advisor had a beautiful baby girl in April this year and is now on maternity leave till September. See a photo of Sanny and her baby on the front page. Tingting Zhang has taken over her position for this time period and works closely with our Asian/Chinese families – including delivery of our Chinese Families Autism Support Group. Our support group for Indian and South Asian families continues to grow also, with friendships emerging amongst the members. These support groups meet once a month – contact us for more information.
Hello everyone,
Our E bulletin continues to be popular. If you don’t already receive this newsy summary of events and news in the disability sector, contact us to sign up to our database and receive this. We promote our seminars and publications by email too so being a member means you are kept fully informed. Another way to stay connected with us is to ‘like’ us on Facebook. We’ve also added a new seminar called Living Options to our range. This seminar explores the four main living options for a person with a disability including Residential Care, Supported Living, Choice in Community Living and Family Governed Models. See the seminar dates/venues on the third page for a full list of our popular seminars. In February we introduced a Social Work service here at Disability Connect to help families experiencing complex multi-dimensional disability issues. The referral process is open and free – individuals/families can self-refer and professionals can also refer to us – our website has an online referral form. We are busily fundraising to ensure this valuable and sought after social work service continues. As an organisation supporting parents and families experiencing disability we value people’s stories. We know the intrinsic value of sharing stories with others, and how powerful this is. In this edition we have collated a selection of beautiful stories from individuals with a disability, parents, siblings and grandparents. Read on, and enjoy these poignant glimpses of other people’s experience and perspective. Lisa Martin CEO, Disability Connect
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This edition of the Networker is a very poignant one, as I’m writing this Chairperson’s report on our son Travers’ 36th birthday. I can relate with so many of the stories. Now, all this time later, I too am a grandmother and I realise just how much Barry’s and my parents loved Travers and were so proud of every achievement he ever made – just like the other seven grandchildren. It’s not to say it wasn’t hard – for them, for our friends or our children. These honest pieces of writing will create connections with readers. As a sibling, you may nod your head – or maybe yell out ‘Right on sister,’ as the writer poses the question of ‘what is normal?’ and the issues associated with being in a family where one person is disabled. I remember hearing someone refer to my family as ‘The Handicapped family on Claude Rd.’ I have to say at first I was shocked – then I thought – whatever, wear the badge with pride!! Many of the stories talk about acceptance, not only of who you are, who your family is but also that others in our family may have difficulty adjusting to having someone who has a different view on life or different needs amongst them. And of course all of this takes time. Embedded in the heart of these accounts is love. Love for family especially. And we so often take it for granted. It’s a wonderfully uplifting edition. Dip in, read and enjoy. Take time to reminisce and celebrate yourself, your family and the journey of life that you have made. Colleen Brown Chair – Disability Connect
2016
UPCOMING SEMINARS w w w. d i s a b i l t y c o n n e c t . o r g . n z
Education Legal Issues South Auckland 4th August 7-9pm Nathan Homestead, 70 Hill Road, Manurewa Central Auckland 23rd August 12-2pm Disability Connect premises, 3b Olive Road, Penrose East Auckland 14th September 7-9pm Highland Park Community House, 47 Aviemore Drive, Highland Park North Auckland 20th September 7-9pm Yes Disability Resource Centre, 3 William Laurie Place, Albany Central/South Auckland 19th October 7-9pm Mt Richmond School, 30 Albion Rd, Otahuhu West Auckland 8th November 7-9pm MPHS Hub West, 27 Corban Ave, Henderson
Planning for Adulthood North Auckland 16th August 6.30-9.30pm Yes Disability Resource Centre, 3 William Laurie Place, Albany East Auckland 12th October 6.30-9.30pm Highland Park Community House, 47 Aviemore Drive, Highland Park South Auckland 29th November 6.30-9.30pm Nathan Homestead, 70 Hill Road, Manurewa
South Auckland 22nd September 7-9pm Nathan Homestead, 70 Hill Road, Manurewa Central Auckland 25th October 12-2pm Disability Connect premises, 3b Olive Road, Penrose Central Auckland 9th November 7-9pm Disability Connect premises, 3b Olive Road, Penrose North Auckland 22nd November 7-9pm Yes Disability Resource Centre, 3 William Laurie Place, Albany
Living Options Central Auckland 30th August 12-2pm Disability Connect premises, 3b Olive Road, Penrose West Auckland 11th October 7-9pm MPHS Hub West, 27 Corban Ave, Henderson South Auckland 26th October 7-9pm Nathan Homestead, 70 Hill Road, Manurewa North Auckland 1st November 7-9pm Yes Disability Resource Centre, 3 William Laurie Place, Albany East Auckland 30th November 7-9pm Highland Park Community House, 47 Aviemore Drive, Highland Park
Transition IF (Individualised Funding) including Respite
West Auckland 9th August 7-9pm MPHS Hub West, 27 Corban Ave, Henderson
North Auckland 7th September 7-9pm Yes Disability Resource Centre, 3 William Laurie Place, Albany
South Auckland 24th August 7-9pm Nathan Homestead, 70 Hill Road, Manurewa
South Auckland 2nd November 7-9pm Nathan Homestead, 70 Hill Road, Manurewa
Central Auckland 13th September 12-2pm Disability Connect premises, 3b Olive Road, Penrose
Central Auckland 16th November 12-2pm Disability Connect premises, 3b Olive Road, Penrose
North Auckland 18th October 7-9pm Yes Disability Resource Centre, 3 William Laurie Place, Albany
Work and Income
East Auckland 23rd November 7-9pm Highland Park Community House, 47 Aviemore Drive, Highland Park
East Auckland 10th August 7-9pm Highland Park Community House, 47 Aviemore Drive, Highland Park West Auckland 6th September 7-9pm MPHS Hub West, 27 Corban Ave, Henderson
THE NETWORKER JUNE 2016
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A GRANDMOTHER’S STORY When Louise was first born there seemed to be a problem straight away. I saw my daughter that day, but not my granddaughter, as she was rushed away to another hospital to be placed into the Special Care Baby Unit. She was my first granddaughter after 5 boys, so we were quite excited at first. The next morning we were told by the paediatrician that there was a big problem and probably a short life expectancy. They knew very little about the syndrome so there were no guidelines. In her early years, Louise got around by bottom shuffling, I don’t recall her crawling at all. At 4 years old, she started to walk after she had some acupuncture, and then walked for a long time. It was really only after a hip operation when she was 16 or so, that she stopped walking, but I don’t really know why. This was sad that she no longer wanted to walk, but she does get around on her knees, so this is better than nothing, and gives her some independence. If outside the home she is taken out in a wheelchair.
Her brother and sister played with Louise a lot when they were all growing up, they really loved her, (and still do). She used to laugh and giggle when she was with them. Especially when her big brother played rough and tumble with her, and they rolled around the floor together. Her sister used to pick her up and swirl her around. Louise loved it so much she would stretch her arms out towards her sister asking for some more. She was involved in all the family gatherings, her mum and dad just took her everywhere. Relatives, friends and their children all accepted Louise as she was and always made a big fuss of her. There are some memories that stand out for me that I cherish. I remember once when Louise was about 2 years old, she and I were out shopping, when someone walking towards us recognised Louise in her pushchair, so stopped and made a huge fuss of her. It was especially nice to see people who knew Louise, liked to stop and acknowledge her for herself, rather than just the fact she was out with me. This person wasn’t even someone I knew. It warmed my heart to see that, and know that Louise was making her own friends – young and old. I also remember when she was in Starship Hospital once, when Michael Jackson (the singer) was here in NZ, and he visited Starship, spending time with Louise as well as the other children in hospital. Her mother was able to get a lovely photo of Michael and Louise together. Recently I went on holiday for several weeks and when I returned she saw me, and rushed towards me with a huge smile calling “Nan, Nan”. It was so lovely. You don’t often get such a big reception from her so it was something very special.“Nan” is one of her very few words, so I am always thrilled when I hear her acknowledge me by Nan and to be so excited to see me on my return on this occasion. The other special thing between us is that Louise always knows Nana has a treat in her handbag when I go to visit
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her and will always go and look for it in my bag. When Louise cannot find the treat, she will bring the bag over to me, so that I can help her to find it. We love to have our cuddles together on the couch also. Louise likes to eat finger food where she can easily feed the food to herself. Over the years it has always been encouraged that she use a spoon to eat, but she does need a bit of help to scoop up the food, so she is much happier to be able to eat with her hands. Her childhood was different from the others. But I always accepted her regardless. I remember she changed how she felt about being held at some stage. She never used to like being held, but it suddenly changed, after some surgery, and now likes to be held and really settles with it. There have been many moments with Louise that have been really special to me, just like the greeting at the pushchair, the Michael Jackson story, or how she greeted me after my holiday. Her milestones have been extremely delayed so it’s when things like these happen, that you really notice what she is capable of and it just gives you so much pleasure and much more love. Was it different for me having a disabled granddaughter? I don’t think so. You take each one at their pace, their ability. Maybe it’s an attitude towards all people regardless of capabilities and I think, life experiences, teaches you that. You just learn to go with the flow. My advice to other grandparents would be to just do that - go with the flow! Do what you can to help, because parents do need that help, and accept the child as she/he is. And most importantly LOVE the child! I think I treat Louise the same as all the other grandchildren. I love them all. They are all one big family. My life as a grandmother has not been different because one of my grandchildren has a disability, but it has given me different experiences of life, but it is all part of life.
THOMAS PEARSON Thomas graced this world with his presence on 19 September 1997. He was just a gorgeous bundle of love and joy, perfect in every sense. 18 years on, Thomas is still that bundle of love and joy with a smile that sweeps you off your feet and warms your heart and remains perfect in every way. Thomas is quite the flirt so I often catch him eyeing up and down beautiful woman giving them that look and smile that just melts your heart. He just has a way, his way. So why am I writing about disability? Aged 9 and half months, life threw Thomas a life threatening challenge called pneumococcal meningitis resulting in numerous issues for Thomas such as profound bilateral deafness, epilepsy and global developmental delay. Likewise this event threw me challenges and altered the direction of my life significantly. From being an accountant to now an author sharing my life experiences especially around Thomas’s and my lives. My dreams and aspirations were altered. Initially I wasn’t happy and accepting of the challenges we had to face. Once (note this took years) I came to a place of total acceptance for who he was, perfect in his way, I found a new level of peace and serenity in my life. Indeed I can’t imagine life without Thomas and all that he brings. My life with Thomas brings so much joy of priceless interactions and moments where nothing else exists to observing him whilst in hospital, him helplessness waiting for medication /surgery to assist him and me helplessness, fearful, angry, not knowing what to do other than be present for him. I found huge support from parents especially mums who were in a similar situation…similar in that their children didn’t fit into any box or bell shaped
curve…Those children who are different in behaviours and yet ultimately the same as any other child with their own “special needs” and wants. I am fortunate to have found these special mum’s where ever my life and travels have taken me. Sometimes I have been so motivated for the support, a few of us have set up and run the support group. Along the past 18 years, Thomas and I have explored numerous therapies, some mainstream, some alternative and some totally off the “beaten track”. All of them have played their part in Thomas’s and my life whether I deem them successful or not…so very thankful for what the practitioners/therapists have shared, explored over these years. There are a few therapies Thomas and I continue with as part of our wellbeing maintenance programme. I find this so beneficial as I continue to navigate life’s challenges as they occur as they do continue. Strength and self-confidence has been gained from my self-exploration into spirituality and the purpose of life. This exploration has satisfied my need to understand things and allows me now to rest peacefully in the knowing that all is meant to be and that everyone and every situation is perfect just the way it is. I guess what I would like to share with other parents is to see the beauty of what is happening here and now as being perfect in the continuum of life. When you see the beauty of your child just in this moment, the striving to fix falls away. And if this isn’t the way you view life, trust that you are doing everything perfectly for you and your child. Know that you are not alone and don’t have to do it all alone. Ask for help, and if that person can’t help, ask someone else.. There will be someone who will be able to help. Also having a supportive husband, partner, family and friends does make a huge difference too. Written By Nicola Irvine
THE NETWORKER JUNE 2016
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TREVOR CULLEN What a way to spend a wet and windy Sunday morning, I thought as I get down the driveway to a house off the main road in semi-rural WestAuckland. It is quite a slope and I wonder how anyone in a wheelchair could manage to get up and down. I knock on the door and without waiting I let myself in. I was here the day before and found Trevor fast asleep in his wheelchair. Trevor suffers from narcolepsy which means he falls asleep suddenly, wherever he is, whatever he is currently doing. Today I find him in front of his computer, in a room set up as an office. Everything in his house is set up for him. Everything is functional, designed, as I find out later, by himself to enable him to live as independently as possible. I sit down and we start talking immediately. My plan was to write his story as we talk (he can type but using one finger only, so I offered to do the writing) but he is so captivating I end up just making notes, knowing I have to write it up later. I ask him to tell me his story, like “what was it like for you when you first found out?” Trevor had a diving accident in his early twenties. He had been with the RNZ Navy, a whole career in front of him. He loved sports, loved cooking, loved his social life and sex. All that changed on a hot summer day when he when swimming with his friends. They all dived into the deep creek, but it was Trevor who hit a shallow part and broke his neck. He knew he was in bad shape when he couldn’t feel his legs. But then again he had “pins and needles” sensation in his feet so he had hope that it wasn’t too bad. Trevor remembers being in hospital on the x-ray table and his parents had rushed in to be by his side. (In fact his dad almost knew something was wrong before he heard about the accident. There had been a photo frame of Trevor in the middle of the TV which suddenly had fallen down.) They had to cut his
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shorts and he recalls being mostly embarrassed that his dad would now be able to see the tattoo he had done! He says that was the first time of many to come where he was aware of losing his dignity. The doctors told him how bad it was, that he would never walk again! But Trevor was tenacious, some might call it stubborn, Trevor likes to think that he rises to challenges. This was a challenge. He saw a man walking out of the spinal unit where he was, after about 6 weeks and thought to himself “I can do that!” It wasn’t to be, it took over 6 years before he left the spinal unit and move into his house. Trevor’s life changed in one split second. The plans he had were no longer going to work. He had to make new ones.Trevor is a very practical person, very handson. When he makes plans he considers them from every angle, anticipates complications and comes up with solutions (and of course a Plan B). He talks about needing to pick himself up and carry on. He looked at what he could do and didn’t dwell on what was no longer possible. So he used his time in hospital to sit down and design a house that was going to work for him. It is the same house he still lives in today. All benches in the kitchen are at wheelchair height. The basin in the bathroom has wheelchair room underneath. Doors are sliding doors. Everything outside is easily accessible and level. The house is on a slope, so it needed retaining walls to make things level. It was a challenge, but it was all possible. It was possible because Trevor didn’t give up easily. Even getting a mortgage from the bank to enable him to build the house was difficult, but Trevor persevered and succeeded. Whilst in hospital Trevor had two paying jobs, he showed he was able to work and earn money. Trevor has written a book and travelled in America. For years he was able to drive a car. He tells me the story of when he first had some modifications done to
the car and said to his mother (he was visiting her at work) he was “just going to sit in it for a while”. Well, he says with a cheeky grin still, he started the car and then drove a little bit, and then a little bit further, and then further still.....until 4 hours later he rang his mum to tell her she had to find her own way home. And he talks about driving through “Spaghetti junction” because “if I could manage that I could manage anything!” But that was at a different time when a car crash in which he was a passenger damaged his left arm. Trevor is quite a fighter. When someone tells him something is not possible, Trevor will find a way to make it work. Trevor requested modifications to his car to allow him to drive when his left arm was damaged. When he ran into opposition he said “bugger it!” and designed and modified it himself. And it worked! When he was supposed to get a hoist, a great expense, he designed a sling (like rescue helicopter uses) at a fraction of the cost. In 1974 he designed and built a hand control for cars to enable disabled people to drive. The “Cullen” is still being used today. In 1980 he designed and built a transit chair for Air New Zealand to allow people to be transported safely to the aircraft. When Trevor saw the need for an ambulance service in Te Atatu he lobbied and fundraised for it, and it is still there today. He has worked as a welder for W.A.Thompson & Co, a wheelchair manufacturer, an estimator at a couple of companies, started Kiwi Racing Ltd and various other projects. Trevor fights “the system” too. He has had fights with ACC, he bemoans the lack of supports for people like him (and he talks about how he managed to find support people who stayed with him for years, by starting a survey) and much more. Trevor has been active in the community. Because of his wheelchair he notices things the council need to pay attention to. He complained about the uneven surfaces and narrow
pavements in his road and the council built wider pavements. He feels we still have a long way to go. Trevor is able to drive his own wheelchair (though sadly no longer drives his car) but sometimes the pavement isn’t wide enough for a wheelchair, broken up and sloping to the side, so Trevor ends up “driving on the road”! (Now, remember I mentioned his narcolepsy? Although he mentions falling asleep in the entrance of Mitre10 and staff calling the ambulance, only to find him wide awake and “good as gold” 40 minutes later, my mind is racing to other scenarios....) Trevor has the true Kiwi “can do” spirit. When people say “can’t” he will try to prove them wrong. He says “Life will always throw you things - it’s called a challenge! You have to take it and make something of it!” Trevor takes the bull by its horns, despite his disability he has been in the driver’s seat of his life as much as possible. He puts it down to values and an attitude towards life handed down by his parents. “Parents are hugely influential in how people view life”! His biggest challenge now is about surviving. “As you get older”, he says “everything takes longer and is more difficult.” It’s not just his health, it’s also about lack of exercise, lack of transport, lack of social interactions and lack of relationships. But he says “but you CAN do something, you HAVE TO do something, you MUST NEVER give up!” And therein lies the message he has for other disabled people or parents/ whanau of disabled children: “Don’t treat them any different, have empathy not sympathy, have humour and always, always think about what you CAN do. Anything else is not going to help you live your life as best you can”. When I leave on this wild and wet day I feel humbled and in awe of this man and his attitude towards life. His resilience is inspirational. Written By Gabi Zundorf
THE NETWORKER JUNE 2016
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SHANANN HAY Welcome to the world of Shanann Nicole Hay, Shanann belongs to the proud parents of Stephen and Chrissy, she is one of four siblings, she has three older brothers, Brent who is 27 currently living in Jasper, Canada, Kurt who is 25, recently left for Vancouver, Canada, and Shanann’s twin brother Liam, the twins recently turned 18 in March 2016. Shanann is the apple of her father’s eye, she is the only female in the Hay Clan of grand children of eight boys and Shanann. The twin’s birth was not an easy one with some complications in getting Shanann out, she did experience some breathing difficulties at birth. With twins you have a direct comparison and we often noticed that Shanann was always well behind Liam in most developmental milestones. Generally, doctors’ comments were that things vary between siblings and not to worry. However, when seeking a second opinion we found out that Shanann had “less white matter” in the brain than normal, this affected her development and ability to learn. The “less white matter” in the brain is classified under Cerebral Palsy. To describe Shanann: she is 5 ft 1inches
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in height of serious attitude, she clocks in at the staggering weight of 40 kilo’s, compare this to her twin brother who is just on 6 ft 2 inches and weighs 80 kilo’s. Shanann’s frame is very slight, the Cerebral Palsy mostly affects legs and her muscles are very tight. To add to Shanann’s world she has ADHD, Autism and is also a coeliac, so no gluten allowed. To the family Shanann is treated like all other siblings, having three brothers, she is well versed in most ball and bat skills, certainly this has been a huge benefit in developing Shanann’s coordination and movements in being able to participate in most sports. Shanann’s favourite pastimes at present are music and The “Wilson Sisters” if you are into horse riding you will know who these girls are. We have Nikau, one of the original Kaimanawa Horses the Wilson sisters mustered from the wild and competed with on the Stallion Challenge. He is based at our place (home) being loved and looked after by Mum , so if you want to talk horses and the Wilson sisters, Shanann is the person for you. The other passion for Shanann is music and you can hear her on Saturday mornings dancing away to the various tunes, music to Shanann is a very
important component, it enables Shanann to control her environment (songs and volume) it also enables her to dance around the room in all sorts of body movements without any care of what’s happening outside that room. To summarise Shanann, she is a happy teenager who lives for the now, has a huge appetite for food, looking at her you would think we don’t feed her. If I loaned her to you for a week you would be looking for compensation. She lives in her own environment, she is only interested in the things that motivate her, she is not interested in politics or where the money comes from, just make sure when she is hungry there is something to eat. Yeah and where is my I-Pad? Do you know that I-Pads have wings? Shanann will not have the capacity to hold down a job going forward and will need to rely on family support for her varying needs as she ages. Shanann didn’t choose this disability and in some ways is the result of things out of her control, what she brings to the Hay family is her energy, attitude and just being Shanann, she has three brothers that care for her and are better off for the experience of having a special sister.
Michael was three years old when he was diagnosed with autism. The moment the specialist saw him, the specialist pointed out that he had a lot of typical autistic behaviours. Since then, our days have been full of learning, challenges, courage and patience.
up, go to school, watch TV, play on the computer, take a bath and go to bed. He never needs a reminder from me. In fact, these behaviour patterns are also considered as behaviours that are typical of autism. Fortunately, when his autistic behaviour patterns are used in the right places, it couldn’t be better.
In his first year of primary school, Michael was in a special school. In the second year, I transferred him to a mainstream school. Michael’s level at that time was a great challenge for not only the school, but for himself and me. I thought Michael needed a chance to try and was prepared to bring Michael back to special school if it didn’t work. I told the principal I would take Michael home when there was no teacher’s aide support. She told me that when the student was in the school , it was the school’s responsibility to look after the student. I was very grateful that the school accepted Michael with an open heart.
Autism is not the choice of the child, the parent, or any other person, nor is anybody’s fault. We should have the courage to face it instead of caring about other people’s attitudes because these people do not know your child. It was God’s intention to hand him over to me. I said to myself: because God knows I can help him, Michael was given to me.
The main reason that I sent Michael to a mainstream school was to look for role models for him. All the students in the mainstream school could be his role models. We were so lucky that he met excellent teachers. Many students looked after him with great patience and tolerance, especially some girls who guided Michael like little mothers. The boys were also very considerate of him.
A STORY ABOUT MICHAEL Michael was born in Auckland. He is 18 years old now. He is a happy child who knows how to enjoy life. He has many hobbies, like playing video games, watching DVDs, playing on the computer, building Lego blocks, playing Transformers, reading story books, listening to music, watching movies and likes to travel. He looks pretty much like other ordinary children. Although he doesn’t have the same ability and maturity as other children his age. He has improved enormously compared to what he was like 15 years ago. I think you can imagine how hard it was for the last 15 years without my description. He has come a long way.
Although occasionally there were one or two children who bullied Michael, I knew these kids bullied other children as well. I think most of the children are Michael’s angels. Michael made significant progress towards observing these classmates, learning with and interacting among them. However, we also experienced lots of difficulties and setbacks. I actively collaborated with school. I went to school to support Michael twice a day. When Michael was in primary school, there were some incidents at that school . During that period, I would be so nervous and anxious when I heard the ringtone of my mobile phone. I knew that a call from school usually meant that Michael was in trouble. However, I believed that all the efforts made would pay off in the end. Michael gained great results in this mainstream primary school. Michael attended the special class in mainstream intermediate and now in high school. He is in year 13 now. He always likes to go to school. He prefers a routine, doing specific things in fixed time. He arranges his schedule very well. His daily life is guided by his timetable, such as the exact time to get
When Michael was 5 or 6 years old, there was a doctor told me that “he is not naughty, that is just the way he is.” We never blame the blind who cannot see, so we should not blame our child for their condition. Can you imagine the method a born blind man uses to understand the blue sky that others describe to him? There are many situations our children will encounter which are similar to a blind person learning colours, something they are yet to conceptualise. We should understand that they cannot learn the things we take for granted. We should give them more time, more practice and encouragement without blame. We should allow them to have their own learning pace. Early intervention is very important.There are many methods that are supposed to improve the development of autistic children, such as teaching methods, biological therapy and so on. Which one is the best? I think only you know the best one for your child. We can try to understand the various methods first, and then we can try whatever you think work for the child as long as it doesn’t do any harm to the child. Every child is different. One method may be effective for one child, but it will not necessarily be useful for another child. We should listen to the opinions of experts and be in harmony with teachers and school. It is not enough to only depend on the school, we must take advantage of every chance in our every day lives to teach and learn. Let us: • face setbacks by courage; • teach with persistent efforts; • overcome his fear with love; • polish his stubbornness with patience; • accompany him during long-term learning with perseverance • let’s encourage each other! Written By Moon Meng
THE NETWORKER JUNE 2016
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KIMBERLY MCLEAN I think I was quite a happy kid. Actually I think I was spoiled and I always thought it was because I was the baby of the family, but maybe it was because of my disability, I really don’t know. And I think I looked quite cute, almost like a doll. One funny story I have been told is about my dad who used to carry me around the supermarket as a baby. One day a man asked my dad why he was carrying a doll, at which point I lifted my head…..and totally freaked him out! Hehehe! I didn’t really feel different until I went to primary school and I noticed I was the only one in a wheelchair. But it didn’t stop me from having lots of friends. I was able to push my own wheelchair so I could get around and visit friends or they would come over to our house. I think they were curious at the beginning, but then I was just like any other friend. In fact I’m still friends with two of my primary school friends.
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My immediate family was great (the extended one took a while). They were very protective of me because I had a lot of health issues back then. When I was 8 I spent 156 days in Starship. That really sucked! But it means I know my hospital number off by heart. My mum was there with me the whole time. That was good for me but I felt sorry for my brothers for not having “mum time”, but it means that my mum and I have always been very close. Even though we now live a long distance apart, we still feel close. My life was/is different not so much because I was disabled (well I still am), but because I was forever going to appointments (hospital, paediatrician, other doctors, orthotics, wheelchair…. you name it I went there). Especially the “pre-appointment waiting time” – I hated that. You sit around for such a long time only to finally see the doctor for 2 minutes and be out again. My teenage years were not so good. The school was on a hill and I had a teacher aide who made me push myself uphill even when I was obviously not coping well or tired. My school treated me (and other students with a disability) with total disrespect. We didn’t sit exams because they thought a fail would impact negatively on our self-esteem. I wanted to do exams to show what I could do! Especially
maths! The work we did at the centre was really more primary school level, not very stimulating. I always finished my work early and then just sat around. I felt it was demeaning. I hope they do not still treat kids like that today! A funny story I remember was at intermediate school when I had a friend who always hugged me. Until one day she saw my feet (they are quite small) and from then on she would always come and hug my feet instead! I think that is quite funny to this day. A real change for me came when I changed school (and town). The High School I went to wanted me to be just like the other students in mainstream, and that meant….sitting exams. YAY!!!! Maths had always been my favorite subject and….I failed! YAY!!! I was so happy about this and not many people understand this. It actually motivated me to try harder and to feel success when I did pass! The last 2 years at High School were brilliant. I played boccia and was chosen “Sportswoman of the Year” two years running. I still have the trophies and am so proud I achieved that. I was sad to leave school and sad I lost touch with a lot of my friends from back then. On the other hand that actually is quite normal.
After school my life changed. There was no public transport from 1pm on a Saturday to Monday morning. And shops closed. There wasn’t much to do. I was really bored. I lived at home, apart from a short flatting stint for a few months. It was ok, but I really missed my mum. I did have supports, and that was good, I was just missing mum. It was 4 years later I felt I was old enough to leave home really and I have now lived away from home for 2 years. I live in a residential care home but it feels more like flatting. I have supports but I am independent enough to go out when I want to and come home by myself. I have moved back to Auckland and there is so much more to do here. I have friends and lots of fun and still play boccia although not competitively any more. I live with flatmates (well that’s how I look at it), all in wheelchairs, and I feel quite protective of them. In difficult times my mum has been my greatest supporter. I can always call on her (unless she is hurt herself, which seem to happen often at the moment. I guess she is getting older?). My brothers have also helped at times, and my dad, so I think I have a really good family. My advice to another person with a disability would be to get out and do stuff and not stay at home and feel sorry for themselves. Parents – encourage your kids to get out and have as good a life as possible. And don’t give up! I do have “down” days when I wish I could walk even just for a day, but most of the time I am happy who I am. I don’t care if people stare or ask stupid questions. I struggled accepting myself until I was 13 (because I think my extended family didn’t), but since then (when they did) – I feel like saying: “What you see is what you get”! Written By Kimberly McLean
JASMINE HOFFMAN Having a sibling with a disability is a roller coaster of challenges and events in life. The screams can be heard over the whole neighbourhood, the stares from everyone wherever you go, the questions I get asked and that people think I am offended by, but I’ve actually heard them thousands of times, a sister with autism is a pretty but disastrous package. When I say disastrous, I mean challenging and insightful. I’m in my mid teens and it has taken me the whole sixteen years I’ve been alive to grasp things and have the knowledge and acceptance, but there’s still tons to learn everyday. The overall biggest struggle for me as a young girl was acceptance. This is broad as it meant to not be embarrassed of her, move on from problems, putting your sibling’s needs before yours and loving her the same way you would as if she was “normal”. It’s weird, really weird, weird that it’s great. You learn different things to other people that don’t have disabled siblings, you have different experiences which gives more knowledge and compassion. The knowledge that I have learnt has inspired me today and helped me with situations I’ve had to face in my life and also to learn about the wide spectrum that is autism and also the wide variety of other disabilities. It has motivated me to volunteer at my own schools special needs disability unit, which makes me feel really good because you know you have made someone’s day even by doing the smallest of things, things others take for granted. It also always guarantees a smile when talking, listening and interacting with them.
how to make toast is just a step up from what she knew before. Just learning things that may seem easy to us can really help them and make them feel better as well, I mean Freesia (my sister with autism) was so happy when she learnt how to wipe a table that she does it all the time. I would look at my friends and how they interact with their siblings, it made me jealous that they could have conversations with them, have help from them and just be a so called “normal” family. I would always ask my mum “Why doesn’t Freesia love me”, “Why can’t she be normal”, “If she doesn’t love me, I don’t love her”. These sound harsh but as a 7 year old, I didn’t understand what ‘Autism’ was. For siblings with a disabled brother or sister, I really want them to know that it’s hard, different and you will be embarrassed by them at some point, but you can get over it! Learn why they’re like that, learn how to handle them, accept the disability but most of all, be Proud. Proud that they are them and that they are different. Written By Jasmine Hoffman
I see ALOT of inequality in society for the disabled, yes there is more recognition of the disabilities and help for them, but that doesn’t change how people view them, react to them, stare at them, accept them, allow them to try things, the list continues for miles. What I find very unfair in society is that people don’t give the disabled a chance. Even the slightest disability can restrict you from things like working, day-today activities and going to school when they have capabilities to learn. Learning is a big thing for me when it comes to my sister. She may not have the capabilities to learn what I learn as a sixteen year old in a mainstream school but learning simple things like
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VIRAJ MANKAME
When my mother told me that I was going to get a little brother to play with, I was a bit sceptical. Being 11 years old and already facing trouble from a sister two years younger than me, I wondered if a younger brother was going to lessen or add to my problems. A few months later, Viraj was born and we were very happy. He was a round ball of dough; chubby and white. I was happy to have a baby doll to play with and look after (under my parent’s supervision). But I noticed that not all of us were happy. Mom was sad, irritated, angry most of the time. I wondered what the matter was. As she tells me now, she was going through a kind of depression at the time. She had come to know that my little brother was, as the doctors put it so eloquently, “not normal”. At that age, my only experience with “not normal” children was an uncle. I call him a child because he was like a full-grown baby. He couldn’t walk, he couldn’t crawl or even flip over on his stomach. He only focussed his eyes on you and made cooing sounds like babies do. And I had felt a deep sinking feeling in my gut that my brother was going to grow up and never walk, talk, play or enjoy life. As my Mom tells me now she had had the very same thoughts. The only thing that had kept her going was that my Dad had pointed out to her that Viraj, even at such a young age, was flipping over on his sides and crawling. Thanks to Dad, my Mom slowly realised that she needed to find out a bit more about my brother’s condition rather than just surrendering to fate. Viraj slowly started talking. He spoke Marathi, our mother tongue. But only the family members understood it.
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For an outsider, my brother couldn’t speak. For us, he could speak, lie and manipulate the entire family into doing whatever he wanted. Cheeky little bugger! He couldn’t pronounce his words clearly, but we could make out what he wanted to say simply from experience. My sister and I called our father Dad. So Viraj started calling him that too. Only, Viraj called him “Taat”. It was so cute that when my sister and I wanted to butter up our dad into giving us something we would call him “Taat” as well. The situation in the family returned somewhat back to the way it was; happy-go-lucky peppered with bouts of temper outbursts. Mom took the lead on finding out about Viraj’s situation. She went from doctors to religious conmen to schools who should be ashamed of calling themselves educational institutions, in search of help for Viraj. As fate would have it, she found her answer right at home, on cable TV. A small runner advertisement at the bottom of the screen claimed to have teaching courses for “Special Children”. Mom was in that mode where she would have gone to the end of the world had she dreamt that it would help Viraj. The small runner ad turned out to be a major turning point. Little did we know that it was going to have a huge impact on all our lives. That ad led my Mom to a school in our town – St. Joseph’s High School. This was the first place that Mom had found, that offered education for my brother. There were other children in his class; kids with Down Syndrome like my brother, Autism and other such conditions. Viraj began to enjoy school. He made friends. My mom enrolled herself for the teaching course. This was a major milestone as
this course became the basis on which Mom applied to come to NZ. Emotionally speaking, our family was settled. We grew up like any other ordinary bunch of siblings; fighting tooth and nail and kicking and screaming all the way. Viraj was undergoing speech therapy. His speech was improving, although not as much as we would like. The only problem that we were facing was our crippling financial instability. With two daughters going through college and a son with special needs, the family finances were stretched thin to the point of tearing. My father made a humble salary working at a wedding card shop. Mom was teaching at Viraj’s school but they paid a meagre salary as well. India did not have the concept of part-time work at that time, so working while studying was out of the question. We were clutching at straws. Help came in the form of a phone call from my aunt (Mom’s brother’s wife) who was settled with her husband and son in Auckland. My aunt was working as a caregiver for people with special needs and she thought that this might be a job well suited for Mom as she was studying the same. The family scraped together all the finances we had. Mom took a loan from her mother and we put it all at stake. Mom was worried as to who would look after us while she was gone but Dad took over that responsibility completely. While Mom came to Auckland in search of work, Dad was looking after all the three of us and managing the household as well. Mom had never been outside the country on her own before. She boarded with her brother’s family in Auckland. It was difficult as Mom took up voluntary work in Creative Abilities where my
aunt worked. She worked hard without pay for the first four months. It was her hard work that got her a job offer from her company. Mom slogged with only one goal in her mind; bringing Viraj to Auckland. She had seen the support system available for children like my brother and she wanted Viraj to have that life; a life that my home country was incapable of offering him. After years of working, Mom was able to get us all settled in NZ. Viraj’s Permanent Residency was a huge battle with the immigration. That’s a story for another time. Today, Viraj is a Permanent Resident of New Zealand and is doing well studying in Wilson School. He goes for respite care and is confident enough to go for sleepovers. He attends camps and enjoys himself. My brother loves to eat, he loves to dance and he loves to go out. He is living his life to the fullest. My advice to any sibling with a medical condition is to look at your brother or sister beyond their condition. My brother has Down Syndrome, but that is not the only thing that defines him. He is so much more. He is loving, caring, emotional, a great dancer, a sweet talker and sometimes a royal pain in the ass. But he is my brother and each one of us loves him to bits. My father and mother are Virendrakumar and Vaibhavi Mankame. My sister’s name is Amruta Mankame. My name is Namrata Mankame-Shanbhag. We wouldn’t like to be unidentified because we are proud of our ass of a son/brother, Viraj Mankame. Written By Namrata MankameShanbhag (Elder Sister of Viraj Mankame).
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MY SISTER AND I I am the youngest child in a family of five. There is my mother, father, brother and sister and then me. Life for me growing up in my family has been different from what you would class as a ‘normal family’ as my sister has a disability. Her disability affects her both intellectually as well as physically. As I am the youngest I do not know any difference between a family not dealing with a disability as to my family, this has just been part of my life from the time I was born. There is only 16 months age difference between my sister Louise and myself, so it was like my mum had two babies at once. As Louise is very little in stature, I grew bigger than her very quickly in my first year. From very early video footage taken of us by my parents it showed that Louise and I would sit on the floor together helping each other learn the concept of please and thank you, by passing a toy backwards and forwards to each other. Neither of us were moving around the floor at this stage. I was around 7mths and Louise was not quite two years old.
In the early years my mother use to take my brother, Louise and I to a CCS (Disability) Pre-School where siblings were encouraged and very welcomed into attending along with the disabled sibling. Here I met many families, disabled children and their siblings. I am still friends with some of these families 22 years later. My parents encouraged us kids to participate in all areas of life – disability sector as well as normal activities without disabilities. Mum and Dad were very good in making sure my brother and I did not miss out on normal activities, although this at times meant that Louise was not always involved in some of the family outings. We missed having her with us, but it meant we could have our parent’s full attention rather than us being pushed aside to cater for Louise’s needs. When I was about 8-9 years of age I had the opportunity of attending a sibling camp run by CCS. Here I spent 2 days and nights with other siblings of families dealing with disability. It was a camp of fun, laughter, and good times. We were indulged in doing loads of normal fun activities e.g Parakai Hot Pools, Rainbows End, Buffet Dinner out at a Restaurant and lots of camp games at the place we stayed. I still have friends I made from these camps. The camps also gave us an opportunity to talk to other kids our age about disability and made us realise we were not dealing with this on our own. A favourite game Louise and I would play and still do, is that I would hold her under her arms and swing her around. She laughs and laughs. She will grab my hand or goes in backwards towards me to encourage me to swing her more. It is always fun to make her happy. As we went through our school years Louise attended a special school, so there was no impact on me during my school years. I have thought about Louise’s and my schooling years from time to time, and have felt that even if Louise had of attended a mainstream school, it would have been better for her to have attended a different school from me, as siblings tend to feel they have an obligation to always be on
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the lookout to make sure their sister or brother is alright. Children should not be put into a situation where they have to be expected to keep an eye out over their disabled sibling all the time. We need to be able to enjoy our life doing normal kids activities and having fun with our peers. We do tend to have more pressure put on us in the way of helping out with our disabled sibling, but parents need to understand that we need to just be kids and not their siblings carer. My parents were very good at understanding this side of things and did not put pressure on us. Maybe this is why my brother and myself are very well rounded happy young adults with no hang-ups in life. All my friends were accepting of Louise and even now when they see her they always say hello to her and give her some attention. A lot of my friends feel blessed that they know Louise and it has made them much more accepting of people who may be a little different. My parents always considered my brother and my needs too – so that we did not miss out on too much of a normal life away from disability. To be honest the only thing I feel I missed out on was I couldn’t always have friends over to stay, as I shared a bedroom with Louise and she disturbed a lot during the night. Although, I had friends over for sleepovers, when Louise was away in respite. I would like to finish off by saying, go with the flow, enjoy your disabled sibling, as it gives you a better appreciation of life. Talk to your parents if you are feeling unhappy about things. Everyone has their own unique personality. Louise may not be able to speak but she certainly is able to communicate her needs, feelings, and her personality shines through. For a little young lady she has a huge personality. For those who do not take an interest in people with a disability it is their loss – there is a lot of love to gain spending time with disabled people. Others become a big extension to your family. Louise’s flatmates are like an extension to our family, their carers are like family also. Love you too guys – J, K, and M. Written By Kirstin Duffee.
GROWING UP WITH HENRY My brother is seven years older than me, therefore I’ve known since I was very little that he has autism. However, I doubt I really understood what that meant as a child. I always knew that he was different because, having friends over growing up, they reacted to him differently. My friends found him confusing because his behaviour was different than what was expected of a typical teenage boy. He wasn’t very vocal and had a weird “mouse voice” when he was younger, but I didn’t judge this. To be honest, most things flew over my head. It was just my life and it was normal to me. There were a lot of caregivers, teachers, and therapists around the house when I was younger. I don’t really remember them working with Henry(*), I just thought my mum had a lot of friends that loved to visit every day. Obviously not. I thought one of the caregivers was there for me, since I was so close to her.
During outings I did notice that he was different. When my older sister and I took him to a movie, he ran off without us when the credits came up and my sister got quite anxious. Due to this, I learned to be concerned about his behaviour without really understanding it was his autism. Henry is incredibly kind. Every night he would, and sometimes still does, serve me ice cream for dessert, whereas a neurotypical teenage brother would never do something like that. He was also apparently very protective of me when I was a baby and toddler. My mum and grandma have told me how he climbed into my cot or chased after me to stop me from running on to the road. I don’t really remember it, but it wouldn’t surprise me. He has always been an amazing brother. He always thought that the Lady Gaga song ‘Paparazzi’ was saying “Papa loves me” and mum said I wasn’t allowed to tell him that wasn’t actually the words. I was almost disappointed when he discovered the real lyrics. Once I worked out Santa wasn’t real, mum also said I wasn’t allowed to tell him. Now that he has left school, his life is very different to what it used to be. Sometimes it makes me anxious and upset about the future when I realise that he will never have a job or move out on his own. This is because I want to help him to achieve his full potential
and live the life that he wants to, but it will obviously be difficult. Henry talks about having a girlfriend, which is something that most young people want in life. He is such a charmer, especially with his selfless ice cream serving, that I feel like he will settle down one day. My mum helped me to cope with having a sibling with autism. She taught me the tricks of the trade of dealing with his quirks. She has also always provided emotional support and been a sounding board. Henry attending respite for two days every week has also been a great help. I think it is really important to have some time without autism dominating every moment of your home life. I would tell another person who has a sibling with a disability to be patient. It can be incredibly difficult at times, but it is always worth it. I definitely believe that having a sibling with a disability has made me a more compassionate and empathetic person. It has opened my eyes to the difficulties faced by individuals with disabilities in our society and by their families. It has also, of course, opened my eyes to the wonderful impact that people with disabilities can have on others’ lives. Autism is simply a unique way of seeing the world. If not for my brother, I would never have gained the personal insight and understanding that I have now. (*)Name changed to protect privacy
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DECEMBER 2014 (REVISED JUNE 2014) JUNE 2016
NETWORKER SUPPORTING PARENTS AND FAMILIES OF DISABLED CHILDREN AND YOUNG PEOPLE
A BIG THANK YOU... We would like to take this opportunity to thank our Funders including:
A big thank you.... We would like to take this opportunity to thank our Funders including: COGS Committees – Auckland, Manukau, Papakura/ Franklin, Rodney/North Shore & Waitakere Counties Manukau District Health Board Foundation North JM Thompson Charitable Trust Ministry of Health New Zealand Lottery Grants Board Northern Regional Alliance Te Pou
USEFUL WEBSITES
www.education.govt.nz/quick-links/special-education/
• Independent Living Service
• Ministry of Health – More information about IF
• Children’s Autism Foundation
www.health.govt.nz/your-health/services-and-support/disability-services/types-disability-support/individualised-funding
www.ilsnz.org/ www.autism.org.nz/ • Autism New Zealand www.autismnz.org.nz/
• Office for Disability Issues – Enabling Good Lives
• NZ Disability Support Network • WEKA (information)
disabilityconnect.org.nz/resources/
www.odi.govt.nz/what-we-do/improving-disability-supports/enabling-good-lives/index. html
• Previous Networker magazines
• Work and Income Supports
disabilityconnect.org.nz/resources/networker-magazine/
workandincome.govt.nz/eligibility/ health-and-disability/index.html
• Taikura trust:
• Auckland Down Syndrome Association
www.taikura.org.nz/
www.adsa.org.nz/
• Accident Compensation Corp.
• CCS Disability Action
www.acc.co.nz/
www.ccsdisabilityaction.org.nz/
• Ministry of Social Development
• Cerebral Palsy Society
msd.govt.nz/what-we-can-do/disability-services/index.html
www.cerebralpalsy.org.nz/
• Ministry of Education (Special Education)
www.ihc.org.nz/
• Disability Connect (links) disabilityconnect.org.nz/useful-links/ • Disability Connect (resources)
• IDEA services
www.nzdsn.org.nz/ www.weka.net.nz/ • Imagine Better www.imaginebetter.co.nz/ • Guide for Carers www.msd.govt.nz/what-we-can-do/community/carers/ • Carers NZ (support/information) www.carers.net.nz/ • Auckland Disability Law www.aucklanddisabilitylaw.org.nz/ • Youthlaw Aotearoa www.youthlaw.co.nz/
WWW.DISABILITYCONNECT.ORG.NZ