Q7: The North Side of Down – Chapter 6

Amanda describes how she takes care of her father in her mother’s absence.

One of the things that people say about people with Down syndrome is that they are very empathetic. While I’m normally not a proponent of generalizations about any group, this paragraph seems to suggest that Amanda does have the ability to read her father’s pain and adjust her behavior to help him.

Does your loved one have a large capacity for empathy? Is there a specific example you would like to share?

“Physical activity was demanding for Amanda. She didn’t want to take walks with me. I figured if I weighed over 200 pounds, with bad knees and tiny, flat feet, I wouldn’t want to walk, either. But she could swim.”

Physical activity is important – especially for adults with Down syndrome. Research suggests that both the thyroid and a lower metabolic rate contribute to people with Down syndrome being overweight. (Global Down Syndrome Foundation)

Does your loved one struggle with his/her weight? Do you have any suggestions for other parents?

Amanda orders a glass of wine at her birthday dinner. They two agree not to tell their father because he wouldn’t approve.

Some families believe that their loved ones should be protected from the vices of humanity (if possible). This passage reminds me of the concept “dignity of risk.”

“Dignity of risk is the idea that self-determination and the right to take reasonable risks are essential for dignity and self-esteem, thus should not be impeded by excessively cautions caregivers concerned about their duty of care.” – Wikipedia

As a caregiver, are you overly cautious in order to avoid unnecessary problems, or do you believe in letting your loved one make their own mistakes?


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