By Michelle Singh, Coordinator of Family Support Services
Everyone is tired of talking about, thinking about and living through COVID-19. I know. We are also well aware of the “thank you” messaging being publicly generated to frontline workers, medical providers, first responders and of course, people who work directly with individuals with disabilities, including school employees, direct support professionals and clinical staff. Then there are those who also lie at the heart of the organization – our families.
Many families who support a loved one with a disability have had little to no breaks in their roles of being the caregivers and providers. With regular services such as community habilitation and respite being interrupted for a variety of reasons due to the pandemic, families have often been left to manage life at home on their own.
Within my role as the Coordinator of Family Support Services, I speak to families quite often. I hear the concerns, worries, fears, and difficulties that they’ve experienced over the past 11 months. Upon considering the scope of this article, I decided to call a family that I saw weekly prior to COVID-19; I provided in-home therapeutic yoga to their daughter, Keshet, who just graduated from school in 2020. What I discovered throughout my phone conversation with mom, Dorit, was surprising, to say the least.
After our usual joyful hellos and excitement to be chatting with one another, I asked Dorit, “What has worked well for you during this time?”
Dorit responded: “Keshet wanted to be outside. In the summer, we took car trips. We realized that over the colder months and into winter, Keshet was missing the drives. So, we started to take more drives, even though it is cold (and the drives are not as pretty or picturesque). During the drives, Keshet uses her Walkman and listens to her CDs.” Even now, during the middle of winter, they try to get out 4 times each week. Even though it is difficult when there is a lot of snow, they still go. Not only did they continue the drives, they started incorporating finding food from gluten-free restaurants into their outings, at times driving for an hour altogether.
They also began making new recipes that Keshet had found, but avoided sweets. By changing their behavior and patterns with food, Keshet has lost 7 pounds.
They began exploring their own neighborhood on foot and know much more than ever about their immediate surroundings.
Dorit has been managing any difficult behaviors as they arrive, which isn’t always something that is manageable if time isn’t available. She mentioned that it is easier to help someone when you know from where the problem stems and why it is happening; having more time together allows for her to truly understand Keshet’s needs.
Keshet is stating her needs more, not crying out of frustration. During this past year, Dorit realized that crying was also a form of communication for Keshet. Now Dorit and Keshet are sharing good communication much of the time which makes the relationships even better with the rest of the family. Dorit said, “This is the good part of COVID; we have opened new doors for her. We have helped her to (eventually again) be around people in a more normal way because we are dealing with the crying” (which was the result of her frustration).
I was most struck by some of the final comments in our conversation. Dorit told me, “I didn’t get to the point of being a mom because I was always the mother to an autistic girl. My strength comes from knowing I am doing something that is helping her for the future. I am happy I have these challenging opportunities to work with her. If something works, I will share it with her and we will have a conversation about it.”
Although Keshet didn’t start attending a day program immediately following graduation from high school as Dorit had hoped, her environment now is more natural and similar to what she will eventually have in a day habilitation program.
Dorit and Keshet, thank you for all of your hard work during this time and thank you for honoring Wildwood’s core values: integrity, creativity, respect and holism. And thank you for doing so with such grace.
Wildwood would like to recognize all of our families during this particularly unusual time of our lives. Thank you for all you do for your loved ones, each and every day.