Posted by: Melissa Pennuto
To the loved ones of disabled individuals,
I am forever humbled in your presence as you care for your family members of all ages who are living with a disability. Working in the community and being around my friends’ families enables me to see, almost on a daily basis, how hard you work to ensure that they are living a comfortable and happy life. I admire your strength, and I empathize with how exhausting this can be, especially for parents.
As a mother of two, I am ready to turn in by 8:30 p.m. each day after directing my children to get dressed, go to school, do their homework, eat dinner, clean their room, wash behind their ears, put their laundry in the hamper, and hop into bed. I am relieved with the knowledge that one day, my children will be able to handle all of these things themselves and will not require my stern glare to remind them.
This weekend I had the pleasure of sitting next to dear “Emily” on the couch at a gathering. As I interacted with Emily about what she likes to do or eat, she expressed (to the untrained ear) with mostly inaudible words that she likes chips and cookies, day camp, babies, and petting the dog. When I struggled to understand her, her mom and sister were able to distinguish her words for me. While I interacted with Emily, I glanced at her mother, who lovingly watched her daughter from afar, an exhausted expression on her face that I am all too familiar with.
Then it hit me – the hope of future relief from the parental exhaustion does not exist for Emily’s mom. Emily is twenty-two, and she suffers from various indeterminable deficits. The need to take care of her is unending, and it does not get easier over time.
While my focus was on Emily, this is a realistic battle for all parents of disabled children. I was reminded today that it is National Down Syndrome Day
. Individuals with Down Syndrome have an average life expectancy of 60 years, a number which is rapidly increasing thanks to modern medicine. The problem is that parents of 60-year-old disabled adults are themselves likely to be in their eighties and are struggling to take care of themselves, let alone their children.
When speaking with Emily, my brain immediately started questioning who will take over when Emily’s mother can no longer care for her? Has Emily’s mother been appointed as her legal guardian now that Emily is over the age of eighteen? What if Emily’s mother is in an accident? Are Emily’s benefits like Supplemental Security Income (SSI), and Medicaid protected if she were to receive an inheritance? How can I help ease some of her mom’s burden?