In the name of Allah; the entirely merciful; the especially merciful - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ

Wednesday, 25 July 2007

Support for siblings of special needs kids

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

ABC News

By Mike Sexton

Posted Tue Jul 24, 2007 8:06am AEST
Kate Strohm formed Siblings Australia to help children deal with having a sibling with special needs.

Kate Strohm formed Siblings Australia to help children deal with having a sibling with special needs. (The 7:30 Report)

About 300,000 Australian families have a child with special needs, and while there has been much debate over the resources available to help those families and the child to cope, there is another aspect that receives virtually no attention.

It is the so-called 'normal children', whose childhood is often complicated by the challenges of having a handicapped brother or sister. Often the needs of their sibling leave them frustrated and even envious, and in some cases, angry, anxious and depressed.

But one woman who has lived through such a childhood has formed Siblings Australia to help children deal with difficult circumstances.

Spending Saturday morning at a suburban Adelaide swimming pool is the highlight of William Bradford's week.

He is severely autistic, and for his father and full-time carer Terry Bradford, this is one of the few opportunities to enjoy some time with both of his children.

"It's a matter of letting him in the water and he will splash for an hour at a time," Terry Bradford said.

At the other end of the pool, 16-year-old Elizabeth Bradford is teaching the next generation of swimmers.

Originally she was not that keen on going to the pool, but because her parents wanted her brother to exercise, she had to adapt.

"I was dragged along kicking and screaming. It's good now, because I'm now a swimming instructor and it's income for me," he said.

Elizabeth Bradford has only ever known life with a brother whose handicap has earned him the family nickname, 'Captain Chaos'. Their mother Fiona explains the nickname.

"If you left him alone for any period of time you'd have every book in the house thrown on the floor and torn, milk everywhere, water everywhere, it'd be dramatic," she said.

For Elizabeth Bradford, just finding a quiet place to do schoolwork can be difficult in a house where her brother needs constant supervision. She has grown up watching the toll caring for her brother has taken on her parents.

"Because of my brother, they've got a very sheltered life," she said.

"We're very independent, we never see anyone. Sorry, I sound very emotional. But ... because of him, we don't go out as a family."

The Bradfords are typical of families across the country caring for a child with special needs.

While there are services available for those children, there are virtually none for the so-called 'other child', the ones without special needs but who are often struggling to cope in a home where parents do not have enough time or energy for them.

Siblings Australia founder Kate Strohm says the siblings have a hard time too.

"They look okay, they walk, talk, and it's very easy for people to think, well, why do they need support? But they don't understand the emotional effects of that," she said.

For Elizabeth Bradford, the emotional effects became too much during her primary school years when she was bullied, which led to depression and tantrums.

"One of the year fours, when I was in year five, said to me, 'Your brother's retarded and therefore you are retarded,'" she said.

Her father Terry says the bullying was painful for Elizabeth.

"It really destroyed her and I was down that school all the time," he said.

With their daughter's behaviour deteriorating, the Bradfords sought help from Ms Strohm, who runs the only organisation specialising in such work.

Her own childhood closely resembled Elizabeth Bradford's, as her sister has cerebral palsy and needed full-time care from her parents.

"I remember going to parties and she'd be at home crying because she couldn't go," she said.

"So it's very hard to enjoy, in many ways, your own successes and abilities. I also felt resentful of the attention that she got but then felt guilty about that."

Support group

After writing a memoir about her childhood, Ms Strohm has found she is being sought out by people with similar stories, asking for help. Eventually she formed Siblings Australia as a support group for kids.

Elizabeth Bradford was glad to meet someone who understood her situation so well.

"Meeting Kate was, 'Oh my God, there's someone that's normal who's had the same things as me,'" she said.

"I could say to her, 'It's so annoying, he's done this, this, and this', and she'll go, 'My sister did this, this and this.' I have something to relate to."

In addition to lending a sympathetic ear, Ms Strohm advocates for services on behalf of families and teaches parents how to care for all their children.

"You can see the lightbulbs go off and the things I'm talking about are simple," she said.

"Parents are often so overwhelmed by what they need to do. Whereas they often go away quite relieved that the sorts of things we discuss are fairly simple."

Fiona Bradford welcomed the advice.

"Kate actually put me straight, because I'd so much cherished having, if you like, a normal child," she said.

She says she wanted Elizabeth to have everything.

"Kate actually got me to realise that I had to accept that Elizabeth had to be more like her peers than perhaps I'd like," she said.

Ms Strohm's work is in such demand she has made regular trips overseas. Her dream is to expand in Australia.

"We need to realise that if we give those kids support, not only does it help that child, but it also helps the child with special needs," she said.

Funding shortage

Carers Australia president Ben Chodziesner says he believes Siblings Australia, like many other programs, deserves more money.

"I think anything which addresses the family situation and makes that easier to cope with is clearly worthwhile," he said.

But he says at the moment, the need for carers is increasing much faster than the funding for it.

"There's never enough. There's a long list of programs and activities that we consider worthwhile and I guess everybody has to prioritise those and determine what's most important," he said.

For families like the Bradfords, the final challenge for their normal child is to care for the handicapped sibling when their parents can no longer manage it.

The Bradfords have begun preparing for that time, but are equally determined their daughter enjoy a full life.

"I would just like her to do whatever she wants to do as well as she can," Terry Bradford said.

"A life that she can be happy with."

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