Kris Grant (right) with her husband, Dave, and children Amelia and Denton.
Written By: Rin-rin Yu
Coronavirus lockdown has been difficult for many of our AG Bell families. For some, it’s been harder than others—they’ve had pay cuts, lost jobs, or had to stop working to help their children through virtual schooling. Some don’t have the same level of resources available to get their kids through virtual therapy. That’s why AG Bell has been working to establish a fund to help support families through these difficult times. If you would like to make a gift to help them along, please visit www.agbell.org/Donate. This time of year is perfect for making a special gift that will have a lasting impact, and we’d be happy to help you set up a monthly gift if that is better for your family. We’ll be sure to tell you how our families are doing with your support.
We’ll be featuring some of their stories in Volta Voices in the weeks to come.
We have four children: Dylan, 17; Amanda, 14; Amelia, 5; and Denton, 3. Dylan and Amanda are typical hearing children, while Amelia and Denton both are profoundly deaf with cochlear implants.
Amelia and Denton were both diagnosed when they were two days old and confirmed profoundly deaf between 4 and 6 weeks old. My husband Dave, Amelia and I were confirmed to carry a connexin 26 mutation.
Before COVID-19, life was busy. We worked very hard to help both kiddos. We focus on spoken language and pay for private sessions with a speech language pathologist (SLP) and we originally enrolled Amelia and Denton in an oral speaking school for children who are deaf and hard of hearing. We used our local area ESD-112 for early intervention and currently have them enrolled in our local school district program for preschool and kindergarteners who are deaf and hard of hearing, as we hope to mainstream them both someday.
Amelia went to preschool, Denton had 2-4 appointments each week of speech therapy and OT, while Amelia had one speech therapy appointment every week. Her school also gave her speech therapy twice a week. My husband worked 60-70 hours a week and I worked weekends at a restaurant. The older kids were busy with their lives – school, activities, and social gatherings.
AG Bell helped our family when we were struggling with paying for the extra appointments needed to help our children fully communicate with the world. AG Bell helped us when we didn’t know how to make a deductible or pay for extra appointments, and when we needed to add the John Tracy Clinic to help Denton.
When COVID-19 happened, everything changed. Suddenly, there were no more services and no more school. My husband lost his job of 24 years. I was laid off. Unemployment benefits were about a third of our normal income. Dave is still unemployed and has not been able to find a job doing what he was doing before, since a lot of big companies put a freeze on hiring big positions. I returned to work in August, but our restaurant is at one-third capacity including staff, which means I earn a lot less and still put in the same hours. We’ve had to withdraw from our savings and retirement, including our 401K, to make the monthly bills and COBRA payments.
Each day we just try to keep it together, establish routines (that never seem to work), try to keep things as normal as we can. However, it’s really hard to tell a 5-year-old she can’t go to a store, or play with friends, or that she can’t meet the new little girl down the street. Our children have learned to wear masks whenever we go anywhere, which is incredibly hard with their processors on. We had to teach Denton that his SLP wasn’t scary even though she was wearing a mask and face shield, and that it was okay to engage with her.
Denton is struggling a lot due to COVID. Virtual therapy did not benefit him. It’s a different experience for sure. He is starting to babble, making mm, ahh and dada sounds. No words yet, but hearing some of what we say. It’s a work in progress that will eventually, fingers crossed, be as great as Amelia. Amelia is the perfect example of why cochlear implants are amazing. She has clear speech, she’s chatty. You would never know this little girl is deaf, she speaks and listens so “normally.”
We stay home a lot and isolate for our health and follow the rules and guidelines. I worry about next year when we owe our $6,000 deductible plus the $1,900 monthly COBRA coverage. I’m concerned about what happens in August of 2021 when our COBRA ends. I hope that my husband finds a job in his field so that we can preserve our future and our financial status. I hope we don’t get to a point where we cannot afford our COBRA, or the appointments and services that our kids need.
I wish that the services for Amelia and Denton won’t be virtual and that in-person services will come back to help them succeed. My wish for the kids is to have a good Christmas—it won’t be like in the years before—and that next year will be better.
Without the financial help of AG Bell, we would not have been able to ensure the communication skills that Amelia and now Denton are developing. The difference has been life-changing for our children. If people only knew how much the financial support has helped our family! It means a lot. It matters to our kids and to their futures.