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It would have been nice, but it never happened.


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Aged 12, 13, 14… it would have been nice. He repeats, after each thought, "That's just the way it is.

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I know it's not her fault. That's just the way it is. I can't change it. Maria attends a day-care centre during the week. But she used to do the looking-after. I was about 10, just before secondary school. There were certain things I knew I could do that she couldn't, such as cook egg on toast. I used to like bacon a lot. I used to like pancakes. So I started doing things for her as well as me. I remember lying in bed — I was I remember the realisation. This was for life. Next day I forgot about it. Whenever I have to make choices — like choosing a career. That's the reason I picked osteopathy.

I wanted the flexibility to work when I wanted to work and three to four days a week. At some point — maybe it's five years, maybe it's seven… The options are I look after her. But there's only one of me, and I have to work. Although Daniel left the family home three years ago, it's as if any day he may be called back.

Three men's worth of just-washed underwear, jeans and T-shirts are airing on surfaces, the sofa, the kitchen table. I ask if he would one day like to have his own family. He is very quiet. My current one hasn't met her. It has limited my options. One relationship ended because of it. No one else will ever love me like that.

Caring for Siblings of Kids With Special Needs

It is clear that Daniel loves Maria, too. It's a rare love — enduring, binding, reconciled.

In many ways, it's the sort of love we all seek to know. Ellie Akyuz Holgate, 19, is a sociology student. Her brother Louis, 16, is still at school and has Down's syndrome.

Emotional Problems Facing Siblings of Children With Disabilities

He's the nicest person I know. It upsets me when people say how he won't be able to do this and he won't be able to do that. He's actually better than others at most things. He's got such a positive attitude — he doesn't worry. Even if I'm stressed, whenever I hang out with Louis I feel a million times better. It was always a given. When I was in primary school people would say, 'What's wrong with him?

Your Child

He has Down's syndrome. But it's more than that. It's realising, very young, that every choice involves someone other than yourself. It's knowing that assumptions about what you can do, and how you will be perceived, are different from other people's. That your life, like your disabled brother or sister's, will be different.

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Despite everything, Victor and Stanley love each other, even if they both struggle to show it. I like seeing him. But he doesn't like seeing me. We go for fish and chips, because that's his favourite. So "it is important for parents to clue children in and keep them updated," he advised. Siblings of disabled children experience an array of stressors and feelings that can increase their risk for significant emotional and behavioral problems and functional impairments. Meyer encourages parents to spend 1-on-1 time with their well children, which communicates to the sibling that "their parents truly care about them as individuals.

Parents should also be encouraged to attend milestone events in the sibling's life, such as graduations or weddings, and not allow the needs of the child with the disability to overshadow the special occasions of the well sibling, he added. Siblings of children with disabilities may experience a "wide range of emotions.


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They may feel guilt about being resentful or frightened about the sibling's health. Guilt can motivate siblings to hide their own feelings so as not to further burden their parents. Or they may feel the need to "be perfect" to compensate for their sibling's perceived imperfections or the stress the sibling's disability is putting on the parents.

Parents should be encouraged to create a safe forum for children to express their feelings, reassuring them that they are allowed to be themselves and do not have to conform to an image of perfection, experts agree. The impact of a disabled child on the sibling changes over time. His organization offers trainings for professionals interested in running community-based workshops for young children.