Parent to Parent Awareness WeekDisability Issues
Delivered by Michelle McNabb on behalf of Minister Turia Speech
I am so pleased to be able to pay tribute to Parent to Parent as a national organisation – and in doing so, to honour the amazing role that parents play in supporting children and families with disabilities.
I firmly believe that there is no greater responsibility, no greater privilege and no greater joy, than the raising of the next generation.
It is literally the most important role facing any parent, to prepare a pathway for their children to travel safely into the future.
No-one knows exactly where that pathway will lead, and what challenges may be ahead. And so I want to really commend your organization for your commitment and your passion in helping families and whanau to walk that unexpected path with knowledge and support.
You deserve to feel proud.
You have grown from small beginnings some 28 years ago, to now being a national organization with eleven regional offices and 500 trained support parents.
But most important of all, you have helped around 5000 families every year.
That’s an incredible achievement and I want to both congratulate and encourage you for the most remarkable efforts you have made to empower your parents and families with information, knowledge and support.
I read a comment the other day which was one of those quotes which made so much sense that I just wanted to share it with you today. The writer, Diane Loomans, outlined her own prescription for parenting in these few lines:
“If I had my child to raise all over again, I’d build self-esteem first and the house later. I’d finger-paint more and point the finger less. I would do less correcting and more connecting. I’d take my eyes off my watch, and watch with my eyes. I’d take more hikes and fly more kites.
I’d stop playing serious, and seriously play. I would run through more fields and gaze at more stars. I’d do more hugging and less tugging”.
It reminds me that when you are made a parent, there is no automatic manual that provides an A-Z guide of how to do this most precious role – to take up one of the most challenging and rewarding roles one could ever take on.
And yet we have such high expectations of ourselves and such enormous aspirations for our children. We form hopes and dreams for them, to live life richly; to laugh, to grow; to become everything they can be. As we prepare for parenthood, we picture the road ahead and make plans.
Having a child with a disability may mean we get to walk a different road from the one we expected.
I know that every single one of you involved in Parent to Parent has faced the realization that your beloved child will face different challenges than many other children. It may mean your child travels a road less trodden. And that means you will need to be strong and resourceful and resilient as you travel that road alongside them.
What that translates into on a daily basis is that you may have had to make decisions with far reaching impacts for your child and your family that you never anticipated.
What has been so special about Parent to Parent is that it provides the support to know you are not alone.
It can be so reassuring to know that as your whanau shape your own unique direction forward, that there are others with knowledge, information and importantly the strength of shared experience to learn from and lean on.
They can help you to navigate the various systems, helping you to learn the languages of the medical, financial, legal and special education worlds – helping you become familiar with the networks; providing a vital social support.
I vividly recall the young man who spoke at last year’s Parent to Parent event- Peter Williams who skied in the 2010 Vancouver Winter Paralympics. He was a truly inspiring person but equally inspiring was his mother Sue.
The other week one of my mokopuna sang his heart out in local talent quest. One of the things that I love about attending things like that is looking around the room as each new talent takes to the stage and you can always identify their respective families – they’re the ones with tears in their eyes, video camera to the fore, and hearts bursting with pride.
This is much the same phenomenon I saw with Sue and Peter. Sue had been with him every step of his journey, for every operation and every opportunity. Once upon a time she was a young mum facing the unknown with a baby with spina bifida. Having no idea what the next week would hold, let alone that one day he’d be representing his country in the Winter games.
I know, as a mother, a grandmother and a great grandmother, just how much you feel your child’s pain – and how over-whelming it is to feel such incredible joy in their achievements as well.
Parent to Parent brings some 500 trained support parents into the lives of homes adjusting to the challenges of a disability, health impairment or special needs with their children.
They can help other parents deal with the isolation and loneliness of feeling that no-one knows what they are going through. Parents who have dealt with similar challenges can share their experiences along the way.
One of the biggest challenges, of course, continues to be around attitudes. We see it all the time – the negative thinking that limits opportunities and pre-determines behaviour. It is an attitude that puts blocks in the way of disabled people achieving everything they are capable of; leading their own lives; living a great life.
I have been absolutely determined to do what I can to change that type of thinking. I seek to create an enabling society which does not tolerate attitudes and practices which seek to limit and constrain.
Since 2010 I have invested three million dollars over three years, to promote positive attitudes and behaviours through both national projects and community action. The Making a Difference fund kicked off earlier this year, supporting local community projects. The second round of funding will be announced later this year.
We have also invested four million dollars over the next four years in Be.Accessible. This is an initiative to inspire and help businesses, people and organizations to step up to accessibility for disabled and older people.
Finally, I want to return to the quote I shared earlier, encouraging us all to take the time to gaze at more stars; to connect rather than to correct; just to enjoy the pleasure of being a parent; the wonder of family.
All of the people involved in Parent to Parent are busy people who volunteer your time to help other families. It is awesome to see over and above your own daily priorities you have made the commitment to reach others.
You have taken new initiatives to connect through video conferencing.
And I want to commend the Starship Foundation and New Zealand TelePaediatrics Society for the video-conferencing network which provides you with the chance to have face to face contact with other parents in a more personal way. It also enables you to have opportunities to link in to specialized speakers and professionals that you might not otherwise have access to.
I am also really impressed with the programme you have created to support the specific needs of siblings. The SibSupport NZ programme has been going since 1986, but I am aware you have also recently established a new programme, 2nd Generation, which has been developed to support brothers and sisters as they support their disabled sibling in adulthood in navigating and negotiating their life to be the best that it can be.
I think this is great initiative which recognises the vital role that whanau play in supporting one another. From my own experiences in sharing the care of my brother who was a tetraplegic I think now how we were often struggling with our own resources and how wonderful it would have been to have picked up the phone and been put in touch with other whanau going through the same journey we did.
I want to acknowledge the leadership of Anne Wilkinson, who has been CEO of Parent to Parent since 2003, but has been involved as a support parent since 1990. She is an incredible role model for this organization, and she is an inspiration to us all – in her dedication to providing support for other families.
In this Parent to Parent awareness week I would love to think that each of us could turn to another parent who has inspired us, and thank them for the difference they have made to your life and the life of your family.
My very best wishes to you all.