a world of possibilities seven people seven families and a world of possibilities
a world of possibilities This photo-story book is dedicated to the people who shared their stories with us. Thank you to Cory, Keegan, Portia, Duncan, Michelle, Justina and Jeremy, their families and grandparents.
Funded by the Think Differently campaign led by the Ministry of Social Development. Š Copyright Parent to Parent New Zealand 2013 Photographs by Bronwyn Jackson (unless otherwise acknowledged) Designed by Matthew Pryor Story writers Sue Robertson and Tony McLean of Imagine Better Published by Parent to Parent New Zealand Inc. PO Box 234 Waikato Mail Centre, Hamilton New Zealand 3240
Seven People Seven Families Sixteen Brothers and Sisters Twenty Eight Grandparents 200+ Cousins, Aunties and Uncles Community A World of Possibilities
A World of Possibilities is about seven New Zealand citizens who are active in their communities. The youngest is three and the eldest are in their thirties. These people are loved and love with abundance. They live in their own homes, go to kindy, school, college and tertiary study, perform and work. They live, laugh, play, study and have fun. They have gifts, skills, talents and huge capacity for contribution, friendship, marriage and success.Each person and their family hold a vision for what makes life good for them. They want what you want. They want what we want. We want what they want. They are just like us. The future looks bright.
Love & Hope
Cory Cory talks a lot, with his eyes and his expressions. He’s a very happy boy who’s having a very typical childhood. Right now we just want him to enjoy being a little boy. It (the diagnosis) did hurt at the beginning. We felt it was so unfair for Cory. But once you see past the Autism then the road gets easier. If we could have seen how we are now (a year later) it wouldn’t have been so scary. We’re getting on with it and Cory’s getting on with it. Cory starts kindy soon. He’s a self driven learner and it will be so interesting to see how he changes as he learns and develops. We live with hope. We embrace Autism. We love everything about Cory!
“When you have hope, all things are possible”
Perceptions
Keegan “He’s a whole new colour in our world.” (Keegan’s mum and dad) A scan can’t tell you the potential of a person, or the amount of love you can have for a person. Just after he was born we learned he had Down syndrome. The doctor said, “Just remember he’s the same boy as when I walked into the room. He’s the same boy!” Because of her brother, our daughter has such a different outlook about people; we envy her. Keegan’s nearly five and he’s off to school soon. There’s a whole new world of learning out there, new games to play and new friends to make. His future holds so much promise. “Nothing is impossible.”
“Be yourself; everyone else is taken” Oscar Wilde
Photo: Keith Maynard
My Grandson Keegan I can always remember
You’ll do things in your time and at
that day in September,
your own pace.
When the news came through
You’ve brought lots of pleasure
about you.
in just a short while.
Down syndrome they said,
With your cheeky grin and your
but how could that be,
mischievous smile,
You looked perfectly fine to me.
And you’ve made me laugh at the
Joy turned to sorrow and I started
things that you do,
to wonder,
Like the Susan Boyle face you pull
Just what the future would bring
When the camera is pointed at you!
Could I look after you?
Life isn’t easy and is not always fair,
How would I cope?
But with a little help I know
I knew nothing about this thing.
you’ll get there,
The months have gone by and I have
And where ever you go
watched you grow stronger,
if it be near or far,
And achieve many things,
Always remember you’re Keegan,
some took a bit longer.
you’re special,
But that didn’t matter it wasn’t a race.
And I’m your proud Grandpa.
“Surround yourself with people who believe in you”
Family
“We cannot live only for ourselves; One thousand fibres connect us with each other�
Portia & her Family We are a family of five. We’d already had seven years of knowing our Portia without a formal diagnosis when she was diagnosed with Cri-du-Chat syndrome. She was already immersed in our everyday lives. A label wasn’t going to change that. We’d also had two more children by then. The three sisters sometimes get frustrated with each other, as sisters do. Growing up with Portia means her sisters have developed empathy and tolerance and humour, qualities which will hopefully hold them in good stead for their lives and future endeavours. Portia was mainstreamed throughout her primary and intermediate years and she’s got to where she is today because of great support from people who worked alongside of her and our family. Portia went to her local high school and while she made good friends in the unit she attended on-site, she yearned to be included in the mainstream. She experienced and watched how students interacted and was so affected that she presented a powerfully moving speech to her peers at a full school assembly of 1600 students.
She advocated about being kind to one another; about how we’re all people with dreams and hopes, and how we express ourselves differently, that’s all. Portia is about to begin her adult journey. She wants to work in a good job like a teens’ clothing store. She’s thinking about going flatting and we’re there to support her when the time is right. As long as Portia is happy, working in a job she enjoys and is loved and well cared for, we think we will have done our job. Family is forever.
“Go forward in the direction of your dreams Live the life you have imagined” Thoreau
“Make big plans and aim high in hope and work�
Work
Michelle The teacher who assessed Michelle when she was seven said she was never going to read. Michelle started reading a week later. She’d probably been reading for a long time, we just never knew it. There was no funding when Michelle first started school and when she finally got funding it was never too much, it was just enough. She went to the same school as her brother.
The school was
welcoming, she was part of the school culture where learners were encouraged to be tolerant, she had inclusive supports in place and she was accepted. Michelle blossomed in that environment. When Michelle got to Year Six there were important roles and responsibilities waiting for the taking. She wanted to be a crossing patrol monitor and was partnered with someone who made good judgement calls.
Michelle was always on time, organised and
totally reliable. Twenty years on, Michelle still has all the attributes of a good employee. Michelle chose the college where she received her secondary education and it’s fair to say she and the family then spent the next five years fighting the system because they could always see Michelle’s potential. Michelle regressed as a learner and we all felt relief when she left at 19.
In the last couple of years of college we tried an innovative, collaborative and interagency approach to transition planning, but perhaps we were ahead of our time. The college supported Michelle around some ‘job tasting’ and her work at KFC continued after she left, for about three years. Michelle has come around a full circle.
She’s part of a cleaning
team who work at the same school as her sister attended. Michelle has been employed by the same cleaning company for 10 years now. She’s a valued employee. Michelle has plans for her future which include continuing to work, keeping in touch with her phone buddies, keeping in regular touch with her family, adding to her cat collection, living in her own place with Roy (the cat), having visitors (she’s a great baker) and getting just the right amount of support to live well. Michelle’s family have been courageous advocates. They stand alongside Michelle still. Michelle is a courageous role model for other people who have learned to appreciate small victories and who dare to dream about what’s possible.
“Courage is the small quiet voice at the end of the day saying try again tomorrow�
Photo supplied
Gifts, skills & Talents
DUNCAN Duncan has aspirations to do what any other 24 year old wants to do: to earn money doing work he loves; to use the most of his gifts, skills and talents; to leave home one day and go flatting; to travel and explore the world; and to find love. Duncan hasn’t chosen the easy path; he’s pursuing a performing career. He has three strands to his bow: music, acting and dance, and he has had success in each of these three areas. For a few years now Duncan has played drums in a band called Mr Handsome. The band has played a number of paid gigs at conferences and parties. At the moment there’s less music in his life and more dance. Duncan has trained and performed with Touch Compass. He’s about to travel to Australia where he’s been invited to train with another mixed ability dance group. While Duncan has always strived to be part of the ordinary fabric of life, he makes the most of options available to people living with disabilities while clinging to the highest of aspirations.
“Nothing is impossible. Dream it. Do it.”
Photo supplied
“Do what is right, strive with all your might towards the unattainable, develop as fully as you can the gifts you have been given, and never stop learning.” Beethoven
Since leaving college he’s successfully auditioned and starred in two pieces of paid work as an actor. His first paid TV work was for a role written specifically for a young man with Down syndrome in an episode of Nothing Trivial, an acclaimed NZ production. Duncan has also played the character of a man with Down syndrome in a pilot episode that the producers are pitching to go to air. That’s the performance business; it’s precarious, with plenty of opportunity and filled with aspiring talent. And loaded with Hope.
Hope & Love
Photo supplied
Jeremy & Justina As a young man Jeremy wanted to meet his bride and get married. As more and more of his friends wed, there were times when he wondered when his turn would come, but he never lost hope. Little did Jeremy know that he had already met his future love. As a young school girl, Justina had laid eyes on Jeremy and said to one of her friends, “I want to get married to him one day”. Their paths crossed again nearly twenty years later when Justina moved to the city and into a supported living arrangement where Jeremy was also living. Their friendship developed and blossomed and on November 26, 2005 they were married. There are ups and downs the couple say, but “We wouldn’t have it any other way. Just knowing that Justina is always there for me and I’m always going to be there for her...”
“Justina is my friend and my wife and I’ll love her forever.” Intimate relationships, life partners and marriage can be really challenging ideas for some people to contemplate. As remote as these possibilities may seem at times, it is important we never lose our hope of finding love.
Connecting Parents • Individualised Information Sibling Support • Education Parent to Parent is a nation-wide organisation that has been supporting families for 30 years, providing support, information and advocacy for families who have children and family members with disabilities or health impairments. Parent to Parent empowers families by connecting them with others who have travelled the same path and understand the challenges, frustrations and unique joy of parenting a child with a disability and assists them to effectively navigate the disability sector while offering individualised information on their child or family members condition. A specialised Autism spectrum information service called Altogether Autism is available through the Parent to Parent network. Parent to Parent’s Sibling Support programme is delivered in weekend camps and one day workshops, and designed to provide an experience that helps siblings aged 8 - 18 cope with the challenges of living with a brother or sister who has a disability. Free workshops and training courses are offered nationwide for parents and family members. All services provided are free and confidential.
parent2parent.org.nz • 0508 236 236
DISABLED PEOPLE EVERYDAY LIVES
ImagineBetter assists people to move from accepting a lifestyle dependent on government funding, to realising a lifestyle where you are supported to be active and contributing citizens using your gifts, skills and abilities. ImagineBetter does this by means of thought leadership, information and training, individual advice and mentoring. Our services are advice and support based and we work in Partnership for delivery and personal outcomes. ImagineBetter offers a range of personalised services including Partners in Lifestyle Development, advice, consultation, Person Centred Planning and Micro-business development. We offer workshops, conferences and a range of resources designed to support disabled people and their families to achieve a good life.
IMAGINEBETTER.CO.NZ • 0800 787 587
a world of possibilities A world of possibilities is about seven New Zealand citizens who are active in their communities. The youngest is three and the eldest are in their thirties. These people are loved and love with abundance. They live in their own homes, go to kindy, school, college and tertiary study, perform and work. They live, laugh, play, study and have fun. They have gifts, skills, talents and huge capacity for contribution, friendship, marriage and success. Each person and their families hold a vision for what makes life good for them. They want what you want. They want what we want. We want what they want. They are just like us. The Future looks Bright.