Posted on July 28, 2020
We all have our stories of how we are coping during this pandemic. Those of us working with our children at home have had to make huge adjustments. And for our family, parents to a child with disabilities, the upheaval has been at times overwhelming.
Our 29-year old son Tyler is known for his winning smile. He is extremely social, always laughing, and loves observing people and being in a crowd.
Nowhere is Tyler happier than at his Change/Penn-Mar Day Program where he commutes weekdays using public transportation. There he is in the company of friends, socializing, exercising at a fitness center and heading out into the community to work on his goals and enjoy a variety of activities.
For someone on the autism spectrum with cerebral palsy who can’t use words to communicate, Tyler is living a life many would not have thought possible.
But then came the pandemic.
That’s when the whole world shut down and the day services Tyler was receiving were stopped until the Developmental Disabilities Administration (DDA) and Change/Penn-Mar worked through how to safely deliver these supports.
We had to endure 43 days without any services while I was working from home. To keep from losing my mind, I turned to prayer and went about trying to create a new rhythm for our family. But Tyler was struggling.
His world went from being really big — seeing a room full of friends, riding public transportation and experiencing a ton of variety during the week at his program — to waking up watching TV, going for car rides, and visiting the community pond. I think I pushed him in his stroller around that pond at least 50 times.
During the quarantine, he couldn’t visit with family. He wasn’t able to attend church services or enjoy the worship team’s music. There was no more shopping in stores or eating at Chick-fil-A.
Our son was bored and grouchy and wondering where everyone and everything had gone.
Making things even more difficult was Tyler’s tactile sensitivity to anything on his face. Wearing a mask was out of the question. Just one more thing that made me realize how marginalized the disability population is.
But a chance encounter with someone caring for a person with special needs wearing a fisherman’s hat with a plastic shield led me to Amazon.com where we found a baseball cap with a shield that Tyler can comfortably wear outside.
Soon after we were informed that Tyler’s services were approved and the supports he needed to make his days more routine and productive were on the way.
An answer to prayer.
Change/Penn-Mar graciously assigned the DSP who has been working with our son at his Day Program. Tyler’s world began to open up and I could go back into the office for a few hours a week.
Today Tyler is receiving supports from 9:00 – 1:30 daily, often venturing out into the community with his DSP to learn how to successfully navigate a shopping cart in the grocery store (he did it!), working out at his fitness center, and exploring our local community.
Having someone in our home to support our son has been life giving for all of us. I don’t have to worry about planning every minute of the day. Tyler is less anxious and looks forward to seeing his DSP and getting out of the house with a “friend,” not a parent. And my husband Gerry and I are eternally grateful to Change/Penn-Mar for working so diligently to stick with our family and find creative ways to help us during this very difficult time.