8 Nov 2015

Sibling Stories

From One In Five, 7:06 pm on 8 November 2015

"My parents liked to dress us the same so my Nana made a lot of our clothes and we always had matching outfits."

"She's pretty feisty. We've had a few disagreements but we get on most of the time now."

Photo of Rose Condon and Laura Carter

Rose Condon and Laura Carter Photo: RNZ/Katy Gosset

"If we went to the supermarket and she didn't get a chocolate bar, then she'd make it known to everyone." 

When it comes to brothers and sisters, so far, so ordinary.

Most people can relate to minor spats and sibling dramas.

But some people will play a more active role in their sibling's future.

Parent to Parent is an organisation that supports people who have a family member with a disability. It also runs Second Generation workshops to help siblings make plans for the family member’s  future.

A Strong Bond

Photo of Melissa Wards

Melissa Wards Photo: Supplied

Claire Clarke of Invercargill shares a close bond with her younger sister, Melissa Wards, who has cerebral palsy.

Her sister currently flats in a supported living facility but Claire is aware that, as their parents age, she will be Melissa's primary support person.

However she says she doesn’t feel a sense of responsibility about that role.

“I would do for her what I would do for any other sibling that I would have had and it’s just to care and support and I’m a very big family person.”

She says her family has been very good at communicating about what everyone wants for Melissa’s future

“I know where we’re heading. I know all the financial and legal implications for that.”

And she says she’s aware of her sister’s own expectations.

“Melissa just wants to be happy. She wants to have her family around, she wants to go on family holidays.” 

She admits it was very hard when her sister first went into a supported living environment. Whilst it was Melissa's wish and everyone agreed with it, Claire says it rolled around very quickly..

“My Dad came round and told me and I got really upset and angry because I couldn’t see how great it would be.”

She says she struggled with the idea of letting go of her sister and putting her in a different environment.

“I felt that to some point that we were giving up a little bit but it was the complete opposite. It’s been absolutely amazing and she’s flourished in that environment.” 

Supporting Siblings

For the last ten years Claire Clarke has also worked for Parent to Parent, helping to run camps for the siblings of children with disabilities and sees many of the same issues arise.

A photo of Claire Clarke

Claire Clarke Photo: RNZ/Katy Gosset

“Some children feel that their parents don’t give them as much attention as what their sibling gets.”

She says the workshop teaches children how to ask their parents for more time and to express the things they’d like to do with them.

She admits she sometimes found things unfair when she was younger.

“When I was younger it was little things like why did I have to empty the dishwasher and she only had to empty the cutlery.”

But she says her parents worked hard to ensure she felt included and never missed out on anything her sister had. And Melissa sometimes went into respite care so Claire could spend time with her parents.

Claire Clarke is also involved with the Second Generation workshops where she helps families think about future options for their loved one.

Caring for Kelsey

She might not have been at the Second Generation workshop but Kelsey te Kaat was front and centre, all the same.

Her family helped design a poster (left) of all the aspects of her life and, as they talked, some similar themes emerged about their daughter and sister: "She's quite feisty." "She knows what she wants." 

They say 22 year old Kelsey, who has Down Syndrome, has a strong personality and is an important part of their family.

Linda te Kaat says she’s pleased to see her daughter, Laura Carter and daughter-in-law, Rose Condon, who were also at the workshop, take an active role in Kelsey's future.

Photo of Linda te Kaat holding a poster that depicts elements of her daughter Kelsey's life

Linda te Kaat holds a poster depicting elements of her daughter Kelsey's life Photo: RNZ/Katy Gosset

“I’ve done everything for so long [] I just think it’s great that the kids want to be such a huge part of her life, even though they’ve got their own lives to live.”

But the move to hand over some control of Kelsey's care is also an emotional one.

“Sometimes you feel like you’re the only one that knows that person properly when you do everything for them.”

But Linda te Kaat says she's feeling positive about the change and she’s ready to let others lend a hand.

“After 22 years I feel Mother can have a bit of a life of her own.”

Laura Carter is almost seven years old than Kelsey and admits she feels protective towards her.

"She's just my little sister - I don't actually see her as the disability."

But she’s aware that other people often stare at her sister.

“I’ve pulled quite a few kids up on it, you know, later in  life when they were pointing, laughing, that sort of thing, and after you’ve said it to the kids they obviously feel really bad about it.”

Laura Carter says she's excited about the plans for Kelsey's future but believes it will require a big collective effort from all the family.

“Because we are [] 22 years into quite a strong routine, there’s going to be a lot of support between us and a lot of letting go challenges to let her have her good life.”

She says the family already has traditions that Kelsey is attached to, including a regular family dinner on Thursday night and the playing of Cranium, or, what they call, “the family game”.

“We know answers to all the questions but we still play it. And we all enjoy it and we always have a good laugh. So really important for her to have that once a week.”

She says the family will support Kelsey to take some new steps

“It’s about letting her make the decisions about what she wants to do instead of us thinking we know what she wants to do.”

That said, Laura Carter says her sister is often reluctant to leave the house and she hopes to encourage Kelsey into some new activities.

“We can’t have her sitting at home all day every day for the rest of her life, you know she needs to get out there.

Rose Condon is the partner of Kelsey's brother Dan and vividly remembers meeting her for the first time.

“She greeted me at the top of the stairs completely naked !”

She says Kelsey has welcomed her into the family and the pair enjoy a special relationship.

“She’s very loving and caring and pretty humorous [] I just love her to bits.”

And Rose Condon is delighted to be involved in planning Kelsey's future

“I’m looking forward to what it’s going to bring. I think this is a really important weekend for everyone and I’m glad that I got to be a part of it with the extended family.”   

Planning for the Future

Nick Wilkinson is the facilitator at the workshop and helps families realise there are different options and activities that could form a part of their loved one's future.

Photo of Nick Wilkinson, facilitator of the Second Generation Workshop

Nick Wilkinson, facilitator of the Second Generation Workshop Photo: RNZ/Katy Gosset

“We challenge people’s thinking, not to just look at services but what’s available beyond services. Let’s look at the individual: Who are they ? What is going to give their life meaning ?”

He says some clients have been people in their sixties who have a disabled sibling still living with their parents.

They’ve come to the workshop concerned about who will care for the sibling in their later years.

“They’re at a place where they’re:  “Well, I’m just going to have to fill those shoes and become a parent for my disabled sibling.”

 Nick Wilkinson says it can be satisfying to hear back from families once they’ve put plans in place.

“[For example] my brother was living at home with his parents. He’s now in a flatting situation. He’s got his job, he’s much happier, there’s more people in his life that aren’t just immediate family - we do get those stories which is really, really good to hear.”

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