Siblings
Posted: September 27, 2011 Filed under: Siblings | Tags: children, disabled, disabled children, family stories, siblings, sibs, swan children, undiagnosed Leave a comment »Having a brother or sister with special needs can be tricky and parents can often worry about their non-disabled child – Are they getting to spend enough time with them? Do they understand why mummy and daddy have to go to the hospital so much?
SIBS is the national organisation that supports brothers and sisters of disabled children and adults.
They have a parenting siblings phone service for parents to help them support siblings with sibling issues such as giving attention, explaining disability, and dealing with siblings’ feelings. They also run workshops for parents on supporting siblings. You can find out more by visiting their website at www.sibs.org.uk
There is also a book by Rebecca Elliott called ‘Sometimes’ which tells the story of two young siblings and the adventures they have when one of them has to stay in hospital.
You can find the book on Amazon here
Some parents have also made their own books to help explain their disabled child’s needs to their siblings – one way of doing this is to take photos and have them made into a book – watch this space for instructions on how to make your own!
Special Siblings
Posted: August 4, 2011 Filed under: Siblings | Tags: children, delayed development, genetic, siblings, sibs, swan children, unknown diagnosis 2 Comments »
“Jack is the older brother of my little Swan Joe. At just two and a half years old he has had to grow up such a lot in the last year and I worry so much that our family circumstances have changed him. I imagine to some extent they have, but I hope that he doesn’t miss out on a care free childhood as a result.
He is by nature a boy’s boy; lively and boisterous , he loves trains, cars, Thomas the Tank Engine, Fireman Sam, wrestling and running around like a lunatic. He’d spend all day outside come rain or shine and, thanks to Peppa Pig, has developed a fondness for jumping in muddy puddles. Yet he is kind and caring in a way that you would never expect from someone so young. He is so gentle with his little brother and it is obvious he loves him dearly. I watched them ‘playing’ together one day. Play between the two brothers is not and never will be the rough and tumble play of boys just 14 months apart.
Joe’s vision is very poor, he doesn’t always respond to sound, he has low muscle tone and can’t sit. Jack lay on the floor beside Joe and took a soft, tactile ball. He held it up to Joe’s face and stroked it gently along his cheek. I genuinely nearly cried watching them. It’s not how I expected my two boys to play together but Jack intuitively knew how Joe needs to play. Long before our visiting teacher suggested on-body signing – a form of basic communication for visually impaired children with additional needs, Jack would hold and shake Joe’s hand to say hello to him. Coincidently this is the sign for hello. I’ve no idea why Jack started doing this – it’s certainly not something he’s seen me do. He strokes Joe’s face gently as he talks to him and even as a very young child himself, perhaps just one and a half, he would move to stay in Joe’s line of vision while he spoke to him.
Other children at two and a half would get jealous when their mothers spend time with other children and not them. Not Jack, he gets jealous on Joe’s behalf. “Talk to my Joe”, he’ll say if he feels that attention is being directed elsewhere, particularly if it’s to another baby.
Jack is an amazing little boy. It’s easy to forget that he is really only a baby himself. Having a child with special needs affects the whole family and special siblings like Jack should be celebrated too. Joe really couldn’t have chosen a better big brother than Jack”
Don’t forget about the siblings
Posted: July 26, 2011 Filed under: Siblings | Tags: disabled, genetic, siblings, SWAN UK, undiagnosed children Leave a comment »I was inspired to write this post after reading this post on Just Bring the Chocolateat the end of a day when I had been really struck by how much my daughter misses out on because the focus is always on her brother.I have two children. My daughter is eleven, and will be moving up to secondary school this year. She is funny, clever and confident. This week she was a star in her school leavers assembly. Not only was she up on stage talking and singing, she also wrote one of the sketches. She has a real gift for words, and for comedy. At the end of the show, while all the other children were being congratulated and given hugs by their proud parents my daughter, uncomplainingly, chatted to her teachers while I consoled her younger brother, who was having hysterics having been overcome by the noise, the emotion and the fear of his sister not being at school with him any more. I was gutted that even on this huge and important day for her I couldn’t put her first, but she was fine with it, because she’s used to it. Because my disabled son doesn’t handle change well his sister has to take change in her stride.
Like any sibling of a disabled child my daughter has a whole raft of issues and challenges to deal with that the majority of her peers just can’t comprehend. And because her brother is a SWAN child (he has a Syndrome Without a Name) she has to cope as much as I do with the uncertainty and the lack of answers. She has to respond to a barrage of questions about her brother wherever we go, and children aren’t as tactful as adults in phrasing their questions carefully. I find it hard to explain that he has complex special needs caused by a rare chromosome abnormality so unusual that, not only is there no name for it, there also isn’t anyone else (diagnosed yet) with the same abnormality. Imagine being a child having to explain all that to other children who don’t know anything about chromosomes or learning disabilities.
My daughter is quiet and thoughtful, and usually only lets her funny side by seen by people she’s used to. People think she’s very serious, but then she’ll lick her own elbow and stick her tongue up her nose (though not at the same time!) just to see their reactions. She has a sense of humour that’s pure Monty Python, and a sense of justice that the real world rarely matches up to. She’s just as special as her brother, and I’m so proud of both of them.
This blog was originally published at http://lexilil.wordpress.com/2011/07/21/special-siblings/
