My Son is Disabled: When Will He Return to His Pre-Covid Life?

By: Kristin Burbank

It seems that almost daily I discuss my friends’ thoughts and feelings about recent changes to their children’s college departure plans. Beloved sons and daughters cannot pack up and leave for the long-awaited college drop off. Some have tried, only to be sent home when universities shut down due to covid outbreaks.

Students must now study online at home this semester or in a dorm room or campus apartment with strict social distancing and other newly created rules that drastically inhibit a “normal” college experience. Sadly, they will not be “grown and flown,” as planned.

My hart breaks for young adults who cannot live their independent lives now. (Twenty20 @jalissa_queen)

I listen to these concerns and I empathize. As the mother of a rising junior, I understand the frustrations, disappointment and anxiety associated with the situation. And my heart goes out to each and every student and family for what won’t be and what’s required now.

At the same time, my heart breaks for another group of young adults across the country who are smaller in number but greater in need. They also have worked hard for their independence and yearn for the opportunity to test themselves, prove their abilities, and start the next chapter in their adult lives. They just happen to have disabilities.

Our son has a severe disability

In our son’s case, the disability is severe cerebral palsy due to a very premature birth. He requires full assistance due to his physical disabilities, but he writes poetry, has perfect pitch, loves his dog and cherishes his independence. Just like his 20-something siblings, he yearns to establish a life of his own separate and apart from his parents.

Like many of his college-age peers, our son has worked hard to master the skills necessary to live on his own: self-discipline, accountability, kindness, punctuality, cleanliness, and perhaps most importantly – self-advocacy. He knows when and how to ask for help, and he knows how to stay safe and healthy.

He has practiced and enhanced these skills for more than two decades through school, camp, community and home life. His bag is packed, but now there’s nowhere to go. Covid-19 is in the driver’s seat.

He was living in his own apartment before the coronavirus, in an “intentional community” within a large city. Such communities require years of planning and development on the part of committed parents and community leaders and are increasing in number as more and more young people with disabilities across the country age into adulthood.

Unfortunately, the pandemic has delivered new challenges to intentional communities, and many young adult residents have temporarily left their independent lifestyles to reduce their potential exposure to the coronavirus.

Our son returned to our family home last March. He has settled into a new routine of online coursework, choral rehearsals and recreational activities – all of which are conducted virtually. He is connected to friends and hobbies through technology, but he experiences Zoom fatigue like the rest of us and misses his “former life.” Despite having already “grown and flown” into his version of independence, he’s stuck in our former empty nest again. And he’s not happy.

Our job as parents is to help him adjust to the ambiguities of life as we now know it. When will we get a vaccine? How long before he can return to his apartment? What will life look like when he does? And how can we make the most of our lives between now and then?

Our son is not alone. According to recent US Census data, more than one million young people age 16-20 are challenged by disability across the country. Like their typical peers, many will not go to college this fall. Or ever. Instead, they will struggle to develop new routines, access job training and education, and contribute in meaningful ways to their communities.

They will yearn for independence and be frustrated when they can’t achieve it. They will do all this while also seeking to understand the perils of the pandemic and how to stay safe in a scary world.

We must support their efforts and the organizations committed to their success, just as we support their typical peers during this incredibly stressful time. We must remember that all young adults are sacrificing and struggling right now, regardless of ability.

Only by working together can we raise all our children to thrive and grow long after this pandemic passes.

You Might Also Want to Read:

Stop Judging College Kids. No One Has Ever Done This Before



Source: https://grownandflown.com/disabled-young-adult-cannot-live-independently-covid/

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