Parents of Vision Impaired (PVINZ) is a non profit organisation made up of parents committed to providing support to other parents of children who are blind or vision impaired – and who often have additional complications and disabilities.
Our parent group in New Zealand had its beginnings in 1983/84 when a small group of six parents met in Auckland for a weekend. We came away saying we were all talking the same language, had the same dreams and aspirations for our kids, and the things we wanted to change.
So Parents of Vision Impaired New Zealand was born! We had in those early days a small grant from the Royal New Zealand Foundation of the Blind to run a newsletter. This early support was converted into substantial support that enabled us to employ an executive officer, to form a committee that could travel and meet, and begin the essential tasks of networking with our parent families, and advocating for our “kids”.
As an organisation we have participated fully in the development and growth of a new education model for New Zealand that is now regarded internationally as a world leader. Parents are represented in that forum, and as a result we have a very close collaborative relationship with the Ministry of Education. In other sectors we have important relationships with the Ministry of Health, and the Ministry of Social Development. Twenty years ago we were spectators, today we are partners. Twenty years ago it was an adversarial environment, today it is a collaborative environment.
We reflect on a quotation from a NAPV Newsletter our kindred parent group in the USA.
Regardless of our son’s and daughter’s disabilities,
our real job as parents is to harness all the confidence and courage
we can for us and model that for our children.
On this journey together we all need plenty of it.
And in modelling it early on, we help our sons and daughters prepare for the day
we won’t be with them except for that which we taught them.
In doing so, we will find many wonderful people who will make all the difference in our world.
We will encounter many difficult people and institutions and policies.
When life becomes difficult, advocacy begins in a new way.
The word advocate comes from the Latin “advocatus” which literally means
“to call, or to answer the call to help another.”
This is the parent’s task.
This is the task that requires confidence and courage…
All that we can muster.
Someone once said,
“In this life, trouble is to be expected. Misery, though, is optional.”
As parents we need to be able to find those who can help in their best way and to establish our place of equality with them.
Our favourite proverb or whakatauaki is from The Whale Rider by Witi Ihimaera:
Kia hora te marino
Kia whakapapa pounamu te moana
Kia tere te karohirohi
I mua i tou huarahi
May the calm be widespread
May the ocean glisten as greenstone
May the shimmer of light
Ever dance across your pathway
The heart and vitality of any parents support network revolves around the exchange of experiences, challenges, successes and failures with our disabled children. Throughout the lifetime of PVINZ we have had the ongoing support of the Blind Foundation. That support, both financial and advisory, has meant we have been able to concentrate our energies on parents, families and children. This has also allowed us to advocate widely.
Parents are neither heroes nor cowards – we are ordinary men and women who try to face the reality of our child’s disability with determination and courage. We all well remember the shock we experienced upon learning of our child’s disability – because until that moment, most of us new nothing about disability.
Suddenly we are faced with challenges we are completely unprepared for. In an instant we are expected to absorb life changing information that involves making life changing decisions. To begin the journey – we seek out the professionals and search for as much information as we can about our disabled kids. We learn that we’re not alone, and that confusion and frustration are common feelings – be they related to medical, educational, social, or rehabilitation challenges. And we learn too, of the rippling affect, and how it affects our family and friends.
Some find that the advice they get fails to specifically address the day to day realities of caring for ourselves and our new arrivals, emotionally or physically. No one told us that we might experience a period of ‘grief’ as a result of not having the perfect child. No one told us that this might be a lingering experience – or indeed may never go away…
From this background emerged our parent support network. We found other parents and families and the sharing began. We suddenly had an instant engagement with another mother or father, who instantly identified with our emotions, our predicament or our space. We found families who had solutions to problems we had agonised over. We also found families who could advocate, who knew how to traverse the intimidating bureaucratic mountain, and who understand some of the professional environment we were now part of. Talking can help. It helps to talk about your situation and how you are feeling with someone you trust and respect. It helps to be a part of something that acknowledges and understands the fear and confusion that can come with having a child with disabilities. It helps to be a part of Parents of Vision Impaired – and we welcome you.