Annette Taylor: Creating the good life for disabled children

Natasha Riddell and her father, John, in Waikato Hospital. Picture / Amos Chapple

Opinion

John Riddell is hoping his daughter, Natasha, will get a visit from a friend while she is in hospital this week.

The little girl - she's just turned 9 - is undergoing her 21st general anaesthetic. This time doctors will take a piece of bone from her pelvis to change the shape of her foot.

Natasha is intellectually disabled; officially she has an unbalanced translocation of her ninth and tenth chromosomes.

"A little bit too much of one and not enough of the other," says the Gordonton dairy farmer. "She should be home after five days, but with Natasha it doesn't often go the way it should."

The operation, lateral column lengthening, is a relatively new procedure and will make it easier for her to walk.

John, as proud as any parent, shows me video footage of his daughter - my niece - using a metal walking frame to move round the house.

"Gail and I never thought she'd walk. It's taken a long time and a lot of work from a lot of people."

Like all parents, John and Gail's life changed forever when their first child was born. She went straight into neonatal intensive care and has had many stays in hospital.

A diagnosis was only made a few years ago. Not knowing what was wrong was tough. The couple went on and had another child, Christopher, now 6 and fine.

"It changed our whole world view," John says. "We meet other families in similar circumstances and seem to go to too many funerals for the children - one a few months ago."

Intellectually, he says, Natasha can be like a 6-month-old but in other ways is older.

"We speak to her normally, but if you want to get into a really intense conversation with her, you say 'Ah ah' and she copies. These talks can last a long time, with no actual meaning."

John says that while his daughter is in hospital she helps to train medical students and registrars.

"But she needs more. This doesn't occupy all her time."

One thing Natasha needs is friends. John is just back from a international conference in Melbourne that opened his eyes.

"I was so busy solving all the day-to-day problems that I hadn't stopped to think about the long-term.

"The problem we have is that in 10 years Natasha will be an adult and that means we've got 10 years to plan how we're going to help her to live life as an adult. It's about getting a good life for her, not a life that's good enough."

The conference, One Person at a Time, involved stories of people who had created great lives for their disabled children.

"They didn't try to change the system, they just made life better for one person at a time and they did it using the existing resources."

Jeff, an American, told the conference how he spent more than 20 years creating the social situations that would enable his daughter to make friends.

He realised people other than immediate family need to be friends with his daughter and be there for her when he is gone.

"He said he's no longer afraid of dying before her."

John says it's not enough to set up a house in the community and tell people to get on with it.

"Just because you're 'out in the suburbs' doesn't mean you're part of the community. You have to have relationships."

The conference heard about an American disabled man who died during major power cuts because no one checked up on him.

"He only had paid workers who couldn't get across town to see him because of the power cuts. None of his neighbours knew him well enough to break down the door.

"In contrast, a disabled person was living in a community set up by a family group where people with and without disabilities live together.

"They all met outside and complained about eating cold leftovers. Using a camp stove, a neighbour made an extra meal and brought it just in case.

"There's a powerful message here. I'm not frightened or overwhelmed anymore. Now Gail and I are thinking about creating a good life for Natasha."

She will need more operations, and "I'm hoping she'll have a few more friends come to visit while she's in hospital".