Maybe this is irrelevant, but one thing really struck me from the article - under what circumstances is it acceptable for a teacher to role-play half the class starving to death? This would be upsetting for a lot of kids. Maybe I'm supersensitive about it, because difficult child 3 gets so terribly upset at such simple things. We try to shield him from unpleasant news as much as possible. We didn't let him see any news or TV programs which featured Sept 11 2001 because we knew it would send him into total emotional overload. Once he did learn about it several years had passed and the emotional distance made it easier for him to take it on board.
Back to topic - the impact of disability in the family is often unnoticed in siblings. We tend to take our PCs for granted and not recognise the unique problems they have in trying to deal with this. parents are often able to take some sort of action, whether it involves organising appointments, giving medication or trying to teach some skills to the difficult child. Meanwhile the sibling is powerless and can only watch, often also feeling passed over. There is also fear - what is going to happen to us? Am I going to turn into difficult child also? I have some worries but my parents have more, so I can't burden them this my concerns...
We are very lucky here in Sydney. We have a resource called Carers NSW. This is an organisation for people who care for someone with a disability. There are information networks that Carers can plug into, to help people who otherwise are feeling isolated. Need to find good respite? Carers NSW has the information and contacts to organise it. Any other services? Just ask.
About 11 years ago another organisation, Interchange, saw a need to support children who care for a disabled adult in the family. They organised a camp for some of these kids (the ones they knew about). Because of my own disability and the charity work I was involved with back then, easy child 1 got to go to this first camp when she was 14. I made her go because I wanted to encourage the whole concept. She was very reluctant and had built in an early escape to another summer camp.
But she loved it. On this camp they took the kids hiking, to the beach, on a fun assault course, boating on the river - all sorts of fun as a group of teens together. Also worked into the camp were counselling/debrief sessions for the kids where they could share their own stories and be equipped with the emotional skills to be able to go back and cope. They were also acquainted with resources they could call on, to help them feel more empowered. When I arrived to collect her early, as she'd requested prior to the camp, she didn't want to leave. But we had to - arrangements had been made.
She had made close friends there who stayed in touch. One boy especially would telephone her once a week from where he lived in the country. They couldn't see each other without a lot of travel, but he would ring. Eleven years later they have been living together and studying together for a number of years. His history - he had been sole carer for his partial quadriplegic mother from the age of 5. She now has an adult live-in carer which has freed him up to study and move away, although he still sees her as often as he can. At one stage he even had a trip to Canada, with his mother, to visit the set of "X-Files". It had been the first time he'd ever been on a plane.
Carers NSW took over these regular camps after about three years and expanded it to include siblings who live with and help care for siblings with a disability. All of my older three have been to camps like this. easy child 2/difficult child 2 met her current boyfriend at one of these camps. They still have discussion sessions and also the kids are often involved in media interviews to raise awareness of kids who are also carers, but most of the emphasis is on getting away from the family for a few days and doing things they haven't been able to do, due to the disabilities. For example, easy child 2/difficult child 2 & easy child 1 have been skiing several times - something I just can't do. They've been to some amazing places, been taken on helicopter rides, been spoilt rotten - and it's all subsidised because another part of having disability in the family is you tend to be poorer. We can't afford a lot of the things they've done. The last big thing they did was a Sydney Harbour Bridge climb - something I know I can never do. These also cost hundreds of dollars each, per person. An unforgettable experience.
The kids come back from these camps with renewed emotional energy and a sense of having been validated. They know that the support they give is appreciated and that they are acquiring skills and maturity faster than they would otherwise. easy child & boyfriend have also been on these camps as adult leaders, to support younger kids still coming to terms with disability in the family. Having the chance to 'dump on' others who also understand from first-hand experience is amazingly therapeutic for these kids.
There are costs in a child having to grow up surrounded by disability and the difficulties it brings. But there are benefits too, which these kids are learning.
I would urge you, if you don't already have something like this in your area - it can be done. The doorway through should be an organisation which supports carers, or some other large welfare organisation. Many of the activities and accommodations are donated in exchange for some heavy publicity. The media love the chance to get a new angle, especially a compassionate one (mind you, our kids and their parents can refuse media access at any time).
This can be done, and done well. The benefits are much greater than you would think.
Marg
