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Breaking Ground 103 - Real Lives, Real Help: Stories of the Council’s COVID-19 Special Grants

by Jolene Sharp, Chief Public Information Officer, TN Council on Developmental Disabilities

COVID-19 brought change for all of us. As it began to take hold in Tennessee, the Council quickly realized we would have to adapt to meet changing needs. One way we did this was by redirecting scholarship funds – typically used for in-person events – to help individuals and families struggling to adapt to life in quarantine.

The first thing we did was listen. We talked with our Council members from across the state. We heard the concerns of members of the disability community across the country.

It was clear the disability community was suffering in unique ways.  Schedule disruptions are harder on people who have disabilities, especially children. Access to in-person services and other help, like respite for caregivers, is more urgent. Anxiety about exposure to the virus is greater.

The Council responded. In early April, we announced new, one-time scholarship fund grants to help people with disabilities and their families stay connected and engaged during social distancing. Priority would be given to applicants in rural areas. The response was immediate. Applications flooded in. Within a few days, all funds had been awarded.

Following are the stories of a few people who received these special, one-time grants. We think you will be as moved as we were by the impact the funds have had on the lives of these families from across our state.

Keeping Up with Early Education: Tynleigh Sykes

Mom Elizabeth Sykes, of Mason, Tenn.:

“We decided to apply for the Council grant because we knew that Tynleigh was going to suffer more than our other two children with the social distancing requirements. Tynleigh’s weekly therapy sessions were shut down as they restricted face-to face visits. We knew the grant would allow us to have another way to carry out her therapy services.

Due to Tynleigh’s age, she wasn’t in school yet. There really weren’t any other programs that could help her out monetarily or with the technology that she was going to require in order to receive teleconference therapy services and doctor appointments.

To say that we were elated and overjoyed once we found out that Tynleigh had received the grant would be an understatement. We knew this was something she truly needed.

Due to the funding and the grant, we were able to purchase an iPad for Tynleigh. This has allowed her to continue her weekly developmental therapy sessions through telehealth. It has truly helped her stay on track in a pivotal developmental period of her life. Where we thought we would see regression, we now have seen continued progress. We cannot express our gratitude enough.”

A toddler who is white with blonde hair laying on her stomach on the floor using the tablet; she is pointing to the screen, which shows big symbols and words to teach her language including the words and pictures for “clock”, “apple” and “flower”.
Tynleigh Sykes uses her new iPad for developmental therapy and telehealth services.
photo of the young artist – she is shown sitting on the floor with several paintings of hers around her and in her lap, doing her art. There’s sun from a window shining on her face, and she has a hint of a smile
Rainbow Mosho at work with art supplies purchased through the Council grant.

Using Art to Process Hard Times: Rainbow Mosho

Mom Yadira Calderon, of Lebanon, Tenn.:

“As a parent, knowing there is an opportunity to receive support from an organization that exists to enhance the quality of life of individuals with disabilities, I immediately jumped at the opportunity. It was so timely, I had just gotten confirmation that my job would no longer need me. We just found out that school was stopping. We needed to help the family because my mom was in a terminal stage. It was too many realities at once and knowing financial support was available to build on peace at home was a godsend. 

The school system does not offer supports that address realities of life that go beyond academics. Other programs do not have the funds to acquire goods that build on maintaining a routine at home and that emphasize creativity. 

[When I found out we had been approved,] I took a deep breath. I gave thanks to the Creator. A few tears humidified my eyes. I began to plan with my daughter to confirm my instinct. Yes, we would be able to get more markers, paints, canvas, brushes, pay for an online class and two sessions of adaptive exercise classes. None of this would have been possible without the Council grant.

My daughter does not need to ask if we can get additional elements/tools so she can keep creating beautiful art, full of color and emotion. This was especially important during this time when we also cared for her grandma, who passed away. Art was incredibly important to facilitate the expression of emotions and concerns. Less than one hour after finding out her grandma was gone, she drew this special piece... Angel in Heaven... That says it all... 

Also, she created a powerful painting: a self-portrait – called The Tree of Life. She drew herself and her hair becomes the tree that holds all her dreams, desires, frustrations, and sources of love. She used a larger canvas, metallic acrylic paint, and markers that were acquired recently, thanks to the grant.

As a parent, I have no greater satisfaction knowing that my child has an outlet to promote growth and help her become an incredible young lady, whom the world may see as disabled, but her abilities will prove otherwise.”

Continuing School Progress with a Familiar Device: Beckett Nelson

Mom Amanda Nelson, of Pulaski, Tenn.:

“We decided to apply for the Council grant after becoming concerned about our son falling behind in school due to coronavirus closures. Our son, Beckett, has cerebral palsy and is in third grade. He attends a special education class in Pulaski, Tenn. Because we live in a rural area, our school system is not requiring online coursework, but it is encouraged. We did not have any way for Beckett to attend Zoom meetings with his class or access online curriculum without an iPad or tablet. Beckett had previously been using an iPad in his classroom and was making good progress with it. However, our school system could not provide iPads/tablets to all students while closed. 

When we found out we were approved for the grant, we were thrilled! It has been wonderful for Beckett to have a device that he is already familiar with to do his work on. It has also helped us as parents so that we can now access his online curriculum and see exactly what skills he should be working on.

This funding has made a huge impact on Beckett in keeping him from regressing during this time. It has provided some normalcy with familiar schoolwork and a sense of togetherness with being able to "meet" virtually with his teachers and friends. We are so grateful!”
photo of Beckett shows a young blonde-haired boy in a blue t-shirt sitting in his wheelchair in the living room of his house, using his tablet on his lap
Beckett Nelson's new iPad allows him to continue his school progress.
a smiling young blonde boy in a gray t-shirt, sitting on the blue yoga ball with toys and puzzles behind him
Corban, 4, uses the yoga ball (provided with the grant) to expel energy while completing a task at his table. The grant provided wall posters (the color one on the wall), a gear game which teaches fine motor skills and command following, a magnetic letter tracer, and the iPad

Growing through Home Therapy and a Communication App: Corban Neale

Mom Lauren Neale, of Columbia, Tenn.:

“We are so thankful for the opportunity to receive this grant. I decided to apply because many of the toys and tools that are needed for children with autism can be very expensive. Adding that with therapy expenses, costs can be quite high. Because of COVID-19, our in-home therapist wasn’t able to come any more, and attending occupational therapy in a clinic was not an option. Therefore, I became a therapist to our son. We started working every day in our sensory/therapy room. The grant helped me furnish his space with toys he can use for his sensory needs and tools to teach him basic skills like writing and naming everyday items.

Corban is not currently enrolled in school, so the grant helped us purchase an iPad for him, which was are using strictly for a communication app. Our hopes are that he can communicate with us via photos, since he is non-verbal right now.

Corban’s learning style is hand-over-hand and repetition. We will use all of these tools provided by the grant for weeks, months, and possibly years to come as we practice these skills over and over.

I am thrilled that he has the opportunity to communicate with us via the iPad. It will take him a while to be trained to use this device, but already he has chosen a few photos to tell us he wanted his sippy cup. The opportunities with that are endless!”