by Susan Fotovich McCabe
Special to The Leaven
LENEXA — While many families are frustrated by the rising tensions of sheltering in place at home, others are separated from their loved ones and hard hit by isolation. One of the populations most affected by COVID-19 restrictions is people with special needs and their families.
Lenexa resident and Holy Spirit parishioner Margaret Holt, 68, is unable to visit her 34-year-old son Chase at his home in Pittsburg. Chase has a developmental disability and lives in a group residential environment.
Before the pandemic, Margaret enjoyed regular visits to Pittsburg. However, both she and Chase are considered at high-risk for contracting the virus and must remain apart for now.
“Never did I imagine I would be here in Johnson County, sheltering in place, while he is 108 miles away experiencing his own social distancing,” Margaret said. “Not being able to hug him and say, in person, ‘Mom loves you’ is hard.
“Plus, at 68, with a history of asthma, my own risk level is high for travel. Chase lost his father suddenly years ago and I want to avoid him having to experience that again with me. As a single parent, that weighs heavily on my mind.”
Chase is not only isolated from his family; his opportunities for social engagement have been curtailed, including his favorite activity: swimming. Chase carries photos of his mother and sister and takes walks with his care providers. But Margaret worries about the prolonged effects of isolation.
“We can find things to occupy ourselves around the house. However, this population finds that more challenging, and staff must be vigilant to prevent ‘cabin fever’ behaviors in all the clients,” she said.
The Newman and Kitchin families, both from Overland Park and Church of the Ascension parishioners, are sharing similar stories. Both of their sons have Down syndrome and live at home.
With the closing of churches and Masses, Lorrie Newman is struggling to nurture her 19-year-old son Keith both emotionally and spiritually. Before the pandemic, Lorrie described Keith’s life as “scheduled.”
Typically, Keith’s week consisted of a Monday-Friday post-high school education program, which included two-plus hours a day of supported employment. He enjoyed lunch with friends, classes and his time with co-workers.
Outside of school, he spent time in the community with support workers exercising, swimming and participating in Special Olympics, Tae Kwon Do, cup stacking, dances, movies, dinners out and plenty of time with friends.
“I can’t emphasize enough the negative impact of this virus on Keith and our family,” Lorrie said. “For people like Keith, who depend so much on their community and their [support people] to live a productive and fulfilling life, this virus has changed everything!
“The hardest part for Keith is going from a scheduled day to nothing. He is not a person who likes to watch TV or play video games, and is a person who relies on others for support.”
Likewise, Dolores Kitchin and her 18-year-old son Johnnie are adjusting to a new normal. Johnnie is a senior at Blue Valley High School. Before the pandemic, he had an active social life as a member of the school’s JV track team and a Special Olympics athlete.
“He had more of a social life than his parents!” Dolores said. “Most kids with special needs love school because they have a built-in social system [that includes both friends with and without special needs] that they socialize with on a daily basis.
“Since Johnnie is an only child, he only sees his father and me on a daily basis. He is sad and anxious that he can’t see his friends. He is also very sad he won’t see many of those friends again, since they may not have a graduation ceremony and most will move on to college.”
Having Down syndrome also compromises a person’s immune system, which concerns both families.
“As an infant, Johnnie had a tracheotomy for two years,” Dolores said. “We lived under the same lockdown situation where we were isolated for two years.
“It was difficult, but our faith was the rock in our lives. Without it, we are nowhere.”
For Johnnie, FaceTime with friends bridges the gap between community and home isolation. For Keith, neighborhood walks — sometimes multiple times per day — and individualized time with his parents and siblings helps.
Lorrie’s best advice during this difficult time is to pray.
“What I’d say to others is pray! It’s my sanity and my peace,” Lorrie said. “Mary, our heavenly Mother, is a mom, too.
“She walks with us moms and will intercede for us. Believe in your heart Jesus is in control, and all we do for our kids is for him and his glory.”