This Year’s Best Gift for Moms of Kids with Disabilities

Happy Mother’s Day to all of us with children who have disabilities! We celebrated early — my husband Mike, Seeing Eye dog Luna and I rented a car and traveled two-and-a-half hours from Chicago to visit our son Gus in his Wisconsin group home.

Our son Gus – he’s bigger and stronger now.

Trips like that used to be a routine, monthly occurrence. But you all know what happened in March 2020. Before our early Mother’s Day trip, we hadn’t been inside Gus’ house to visit him in 16 months. It’s been a long year, and we are grateful to the group home for following CDC regulations to keep Gus and his roommates safe. None of them ever tested positive for COVID, and all of them are fully vaccinated now.

Typically, we call the house on the drive up to let them know we’re coming — and to be sure they didn’t have some outing planned. We called as we were driving up, but the house phone was busy. And busy. And busy.

It’s common advice for those of us who have loved ones in the care of others to make unannounced visits…to check on their care. And early on we did that from time to time, but over time, our trust had grown. And Mike and I don’t really like sneaking up on people whom we’ve come to trust. This time we had no choice, though. We just showed up.

Gus’ house is actually a duplex. Four bedrooms, a living room and a kitchen on each side. An inside opening between the units allows staff members to toggle between as necessary. But Saturday, there seemed to only be one staff member there. All the residents were just finishing lunch when we arrived, and the staff member had her hands full. When Mike explained that he’d tried to call, she apologized. Minutes earlier she had realized one of the residents had knocked the landline phone off the hook.

Some might judge this staff member as irresponsible, but we knew better. She was just overworked. The nonprofit Survival Coalition of Wisconsin Disability Organizations conducted a survey of 504 providers of disability services showing that costs are rising and revenues plunging across the industry. Nearly 20% of surveyed businesses and organizations providing such services were unsure whether they would survive the pandemic.

A number of the part-time workers at Gus’ group home attended local colleges. With classes meeting online now, those students have left the area to live at home with their parents. Other staff members have left for safer jobs. A story on Wisconsin Public Radio (WPR) reported that “aides take on demanding duties and are typically paid about $12 an hour in Wisconsin.” And it’s not just Wisconsin. More from that WPR story:

The long-term-care sector has experienced at least 6% of Wisconsin’s coronavirus diagnoses and more than 40% of deaths from COVID-19.

And it’s not just in Wisconsin. I’ve heard that long-term caregivers are in short supply across the country. Caring for people with special needs can be overwhelming. We know that first-hand. Way back—nearly 20 years ago—when Gus had just moved away — we’d take him on outings. Typically to Culver’s, where he’d demolish a double cheeseburger. Then we’d take a ride, roll the windows down and sing along to tunes blasting on the radio.

That was fun, but Mike can no longer muscle our son in and out of his wheelchair and in and out of the car the way he used to. We stick to house visits with Gus now, sitting and talking with him. I update him on what his aunts, uncles and cousins are up to these days —he doesn’t always understand, but it’s enough for him to recognize that it’s his mom talking to him. Then Mike chimes in, calling out a robust “Hi Gus!” in his best booming dad-voice.

Gus always recognizes our voices. Our early Mother’s Day visit was no exception — he smiled and laughed the minute we entered his room. And then he just erupted, about every 10 seconds, with an excited roar of joy. Hearing that, sharing hugs, back together after so many months away…I truly couldn’t ask for a better Mother’s Day this year!


 

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