For most of us, the arrival of the warm sunny weather after a long, cool spring in lock-down was a welcome change. However, for Easter Seals mom, Melissa, getting outside to enjoy the summer became an added source of anxiety.
Melissa’s twelve-year-old son, Sean’John, has cerebral palsy quadriplegia and is non-verbal and completely dependent on others for his care. As a result, he is more vulnerable to catching the COVID-19 virus. “It was easier to stay inside, especially when it was cooler. It’s really hard to find safe ways to do things outside now, and I get anxious about trying to go out because of Sean’John’s condition,” says Melissa.
The pandemic has brought on a host of additional challenges for families with children with physical disabilities. Sean’John had just started communication classes to assess what type of communication device would suit him best. He had waited a whole year to get into the program, but the pandemic put that program on hold. Although Sean’John is “very laid back and has a good sense of humour,” since he is non-verbal, without a communication device “I don’t really know what he needs or if there is something wrong,” says Melissa.
The cancellation of school meant no in-person contact with teachers or classmates and basically eliminated any opportunities for socialization for kids with physical disabilities. Discontinued support by personal care workers and therapy sessions has required parents to provide 24/7 care while also trying to work and care for the rest of their family. With no respite options, many parents are suffering from exhaustion and stress.
“The physical aspect of caring for a fully dependent child 24/7 is difficult and tiring,” Melissa comments. “You can’t just do what you want. There is always something to be done.”
Through the generosity of our donors, Easter Seals has been able to assist Melissa with funding to help purchase accessibility and mobility equipment for Sean’John, including a porch lift, wheelchair and bath seat. “Sean’John is 100% dependent on his wheelchair and is quite spastic. The new chair is much softer and has really helped to make him more comfortable – he looks much more relaxed now,” says Melissa.
The porch lift and bath seat have made it possible for Sean’John to enjoy some simple pleasures again. “At 55 lbs. Sean’John was getting too big to lift. It was hard on my back and it prevented us from going out. The porch lift has allowed us to take him outside again, even if it’s just to sit,” she continued. “The bath seat has made it much easier to get him in and out of the bath, which Sean’John finds very soothing on his stiff muscles.”
“Receiving assistance so that Sean’John can have the right equipment is really important, especially since he can’t communicate with us. Without this support, it would be so much harder for us to provide him with this quality of life,” says Melissa. “Now it’s much easier to do things with him and even his little brother is able to help and play with him. We are very grateful that there are others who are willing to help us have the ability to do more with our lives.”
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