DR RADICA MAHASE
“My daughter is 20 years old and she is severely autistic. Mentally and emotionally, she functions at the level of a five-year-old.
"I have an excellent support system. My husband and the grandparents on both sides as well as the aunts and uncles have always been loving and supportive with her. They are always buying her presents and bringing over her favourite food.
"My other child, her younger sister, is 16 and she’s the best we could have ever asked for. She takes care of her big sister, she understands her, although her sister doesn’t speak, and we can leave the two of them to do things together.
"Yet I worry about what will happen to my autistic child when I am no longer here. I can’t help it. I look at her and I see a child who is so innocent; any nasty person out there can take advantage of her. We make sure she is safe, we are always looking over her and I am worry that when I die, nobody will be able to take care of her the way I do.
"It is one thing to be a good aunt or uncle who will spend time with an autistic child for a few hours, but it’s a whole different thing to take care of an autistic child 24 hours, seven days a week. I know some parents who are mentally and physically exhausted. Sometimes I get exhausted, especially when she is not well. How then can I expect someone else to do what I do?
"My husband keeps saying we don’t have to worry because our younger daughter is there and she will take care of her.
"I think it’s unfair to expect my younger daughter to focus on taking care of her sister. I think she shouldn’t have to feel that responsibility, that she should have a chance to choose whatever life she wants – if she wants to travel, to migrate, to work long hours. "Also, what if she becomes resentful towards her sister when she gets older and she feels her sister is keeping her back? Or what if she marries a man who won’t be able to understand the whole situation, who won’t want an autistic adult around?
"All those questions keep popping up in my head.”
[caption id="attachment_957271" align="alignnone" width="1024"] It is important to ease the financial burden on siblings in whatever way possible.Photo courtesy - Rahul's Clubhouse -[/caption]
Alana’s fears resonate with most other parents/caregivers of special-needs children. It is probably the biggest fear that they have – worrying about who will take care of their child when they are no longer around. Parents of neurotypical children know that their children will grow up and get a job, get marry, have their own families and so on.
However, parents of children with special needs and disabilities in general, may not be able to see that for their children, given their development levels. Regardless of the level of development and functionality, an individual with special needs will need some kind of assistance. When parents and caregivers are accustomed to being responsible for their children, it becomes distressing thinking about how that child will manage when they are not around.
It is highly advi
