It must be completely exhausting to grow up in a home that revolves entirely around preventing the next meltdown or physical injury.
It takes a unique toll on a teen to realize that their own milestones will always take a backseat to a disabled sibling’s severe struggles.
When you are old enough to see that your parents’ devotion is actively destroying their quality of life, how do you convince them that letting go might actually be the most loving choice available?
This 19-year-old guy currently lives with his two stepsiblings, a 15-year-old girl and a 17-year-old boy. He’s been living with them for a bit more than a decade now.
His stepsister is autistic, but she’s high functioning, and he has a good relationship with her, so he doesn’t find her problematic at all.
“Sometimes I take her to see movies or go out to eat. My stepbrother, on the other hand, is severely autistic with Down syndrome and some other stuff,” he explained.
“He is physically normal, as in he is basically the size of a regular 17-year-old boy. He cannot do anything for himself. He will never be able to do anything for himself. He has to be fed and bathed and everything, and he can’t talk. But he does make noises.”
Occasionally, his stepbrother makes noises at a volume that’s so loud, it interferes with his ability to do anything. His room is located in the basement, so he can get away from it all.
However, sometimes he can’t even block out his stepbrother with earplugs, so he resorts to putting music on full blast so he can manage to go to sleep.
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“He bites and scratches and everything, and [as] I said, he’s totally normal strength-wise, so if he gets ahold of you, it really hurts. He keeps my family from doing things normally,” he added.
He and his stepsister have to decide if they want their parent or stepparent to attend school events or games with them, as the other one has to stay home, since his stepbrother requires care 24/7.
His 51-year-old mom has a job that she adores and excels at. But lately, his mom has mentioned quitting or taking a different position, since his stepbrother requires so much of her. He finds this wildly unfair.
“My parents love him, but I hate to see them have to spend their years that should be relaxing and doing old people [stuff] chasing my brother around and being hurt by him and basically just caring for a giant baby,” he continued.
It’s difficult for him to live like this, and he really wishes his parents would put his stepbrother in a home, so everything can be easier on them all.
If his mom is already talking about quitting her job for his stepbrother, I’m sure her caregiver burnout is at an all-time high, and now would be a good time to sit down and have a conversation with her.
He should be honest with his mom about his feelings and ask her to consider his request. Or at the very least, maybe he can convince her to look into respite care.
What advice do you have for him?
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By Bre Avery Zacharski
Hi, I'm Bre, Chip Chick's CEO! I have a degree in Textile/Surface Design from The Fashion Institute of Technology, and... More about Bre Avery Zacharski
