Effective Communicating During a Pandemic
Parenting an adult with a disability involves nurturing, caregiving and advocacy. When you’re parenting a disabled adult during Covid, things can become even more stressful. Some of the challenges when parenting are present all the time but during a pandemic they are amplified and cracks become apparent.
I am the parent of Joanne (43) and Darren (41 ). Joanne has an undiagnosed disability that requires her to have someone with her the majority of the time. She currently lives in her own home with two roommates. Her living arrangements also include rotating staff members who help her out during the day when her roommates are working or at school.
Challenges of Parenting During Covid Arise
Joanne had a new staff member who didn’t know her all that well. She was employed for about a week when Covid started to become a household word. She noticed that Joanne had been sniffling and coughing. Sniffling and coughing are two symptoms of Covid-19, so she contacted her supervisor. Because she had heard that these were two symptoms of someone who had Covid19, she contacted her supervisor.
Her supervisor told her to call the health line at 811 and ask them what to do. I don’t know what was said to the 811 nurse because at that point I had not been notified of any concern. I don’t know if they told the nurse that Joanne had a disability or not.
Based on established protocol, the 811 nurse recommended that Joanne self-isolate. The agency then notified me that they could no longer support Joanne until she had been quarantined for 10 days.
Her roommates did not have a life that allowed for them to drop everything (online school and work) to be with Joanne. So what were we supposed to do? Joanne could not be left alone and there was no one to be with her.
We picked Joanne up from her house. She moved in with us, her parents, for ten days. I’m in the high risk category because of my age and my husband has medical concerns.
Luckily, Joanne and our family had Plan Edmonton. Through the network we had worked years to set up, we had access to a support system to help us through this stressful time.
Parenting a Disabled Adult: What Should’ve Happened
Because I am the holder of Joanne’s story, I have invaluable information about her that a staff member or roommate could not be expected to know. As a result, I should have been notified the moment the staff member became concerned. Yes, they followed the protocol set out by the medical system, but they forgot to take into consideration the human being.
What I could have told them was that Joanne is always sniffling because she does not blow her nose properly. What she needed was for someone to point that out to her and help her. I could also have told them that the more alarmed they became with her coughing and the more attention they gave it, the more she would cough. Her coughing was a reaction to the attention she was receiving.
I would have told them to help her blow her nose, ignore and don’t react to her coughing for a couple of hours and then see how she was behaving. I can guarantee the “symptoms” of Covid-19 would have disappeared.
Holder of My Adult Daughter’s Story
What many people fail to realize is that, unlike parents who have adult that don’t have a disability, I am and will continue to be the keeper of my daughter’s story.
The relationship between parent and adult child with a disability will change much slower over time. For her and I, my parenting role has not changed nearly as much as it has with my son. The only person that holds her story over time is myself. Holding her story means I am the only one who has been by her side for more than forty years. I know her medical history, her fears, how she reacts to things and why.
Our story is full of nurturing, caregiving and advocating well into her adult years.
Nurturing her has remained a part of our relationship and will as long as I’m a part of her life.
Life events like learning and building a career, marriage and children do not change the parenting role like it does when an adult child does not have a disability. Facilitating change long after they have become a legal adult is more directive than it is with my adult son. Emotionally this is difficult for parents since the instinct is to protect your child from the hard lessons of life.
When I needed help with her care when she turned 21 years old and had to choose group home living, facilitating this change was riveted with guilty feelings for me although I understood the move would be good for her and I. I continue to encourage her to try new experiences, expand her relationships and to make her own decisions.
What Parents Know about Parenting a Disabled Adult During a Pandemic
Caregiving, for some parents, will never end. For my daughter, I will always manage her health-related concerns. I continue to take her to the doctor, manage any medication she might need, take her to the dentist, take her shopping, and to get clothing altered to fit properly. I will help her navigate menopause which will be difficult for her. She will not fully understand what is happening to her or able to communicate in detail her symptoms. Full parental caregiving will be needed at this time although her and I will be much older than we are now.
Parents of children with disabilities learn quickly how to advocate for their child. The systems of supportive care and funding become a mainstay in our lives. These systems push us into being a lifelong case manager in addition to be a parent. We quickly learn the meaning of the terms, individualized education plan, person-center care and associated budgets, and individualized support plan. For myself, I have had to advocate continually to keep my daughter’s supports out of a medical model and focused on an independent community living model for her.
Care systems will always revert or use a medical model as their default model. The recent COVID-19 is a primary example of a medical model rising to the forefront again. We are all focused on the symptoms of the individual and when infected, social isolation is a primary treatment. The advocacy and creative thinking once again are left to her parent.
For the parent of an adult with a disability, the pandemic has brought about some unique challenges and concerns. The gaps in care have become wider and cracks are showing up.
Meloney Patterson is the mother of two adult children, and a disability advocate. During retirement she keeps busy with curling, gardening, golfing and volunteering in her community. Meloney is the former president of PLAN Edmonton.
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