This is a topic close to my heart. There’s been a lot of debate in the Sydney media this week about the closing of Kingsdene School in Telopea, which is a facility for severely disabled kids. And naturally a lot of parents are really upset at the thought of losing the school. But the positive side of all this is that it’s led to a lively discussion in the media about the needs of families with disabled children. And particularly about the stress that families are under now that there is so much less residential care and respite for kids with severe disabilities.
In one discussion I heard, there were a number of parents who were saying that if the school closes they may have to hand their child over to DOCS because they just can’t cope any more. I can’t imagine anything more heartbreaking. I don’t have a disabled child myself, but I do have a brother with cerebral paulsy. He’s an intelligent, happy person, but he’s in a wheelchair and he needs full-time care. Fortunately he was able to go to school at The Spastic Centre, so my parents were never overwhelmed by that need for 24-hour care. But there seems to be a lot less options for disabled kids now, and many of them live at home until their parents are simply too old and frail to look after them any more. That has to be an enormous source of worry and stress to their parents.
I think there’s much more recognition today about the impact of disability on siblings than there was when I was growing up. When you have a sibling that’s disabled or sick, you grow up being very aware that life isn’t ‘fair’. For me, that question really tormented me in my teenage years: Why was it that I could do so many things that my brother would never experience? And I felt quite a big responsibility to live my life to the full because of that. But I think there are lots of positives that can come out of it too. I think my sisters and I all have a bit more compassion for people who have special needs. And I think we experienced something of the way God sees us. The bible says that ‘man looks at the outward appearance, but God looks at the heart.’ As a child I used to get very angry when we would go into town and people would stare at my brother as we walked down the street. These people were just seeing the disability, the ‘difference’. But of course, when you love someone you don’t see their disability, you just see the real person, you see what’s in their heart, rather than what they can or can’t do for themselves.
Do you have a child with a disability in your family? What kind of impact has it had on their siblings? Have their been some positives aspects to your situation or has it just been really hard on your family? What do you wish other people would understand about your disabled child or sibling?
You can find out more about the fight for a National Disability Insurance Scheme here.
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