“Hello, Dalia, how are you today? How do you feel today?” Hannah sings to Dalia. She begins dropping out words from the songs and waits. “I feel happy,” Dalia types out. There’s a certain kind of joy that comes with witnessing someone who is very good at her job while she’s in the middle of doing it. Hannah Rhinehart is indeed very good at her job.
As a neurologic music therapist, she guides her clients through sessions that involve different modalities of singing and clapping together, playing instruments and dancing on footprints marked on the floor. As the song becomes more call and response, Dalia replaces the words that Hannah is missing. If she waits too long, Hannah points to Dalia’s PRC communication device and asks with a smile, “What’s the word?”
Dalia Cheskes is a 19-year-old young woman living in Roswell, Georgia. She has autism and Type 1 diabetes (T1D). The curriculum Hannah uses with Dalia is a combination of her own original music, songs by the founder of the George Center Foundation, Jamie George, and even popular songs by Meghan Trainor that Hannah has adapted. The two have been working together for three years. As Hannah and Dalia go over to the piano to work on their recital piece, “Call Me Maybe” by Carlie Rae Jepsen, Hannah lightly holds Dalia’s left hand over the keys and points to which fingers should play while singing the lyrics.
“What should we do next?” Hannah asks. “Song,” Dalia replies. “Not quite,” Hannah replies, encouraging Dalia to make a complete sentence with her device. They eventually move to an activity that involves hand drums that Hannah holds in upper and lower quadrants, asking Dalia both to hit with her hands and kick with her legs. “Eyes first, then hands,” she coaches, as Dalia struggles a bit to make contact quickly with the drums. Hannah is helping Dalia to link up her cognitive, motor and language skills throughout the session.
With the session over, Hannah and Dalia come out to the lobby to find Dalia’s mom, Rebecca. Hannah sits down with Rebecca to report on Dalia’s progress and accomplishments. Dalia hovers nearby in the noisy lobby, a little impatiently as many people are talking all at once, and Dalia is not a fan. She sits down with her iPad, so she can distract herself from all the noise. Rebecca wonders together with Hannah about the upcoming recital. In a tale as old as time between teenagers and their parents, Dalia has developed a dislike of her mother’s presence when she plays or performs; it hurts her mom’s feelings. The two adults discuss whether they should create a visual schedule for Dalia that will ease her tension.
Dalia’s family uses her Medicaid waiver funds to pay for her participation in music therapy, and she also attends an annual summer camp at a theater. Even though she’s only 19, Dalia is on a full New Options Waiver (NOW) and has been for seven and a half years. Rebecca says they were lucky to get one so early, but unfortunately it was because there were dire health issues in the family. Rebecca started calling everyone she knew to see if they could help get the application moved up the list if possible. It was approved six months later. Thank goodness, those health issues were resolved, and now they do not have to worry about getting Dalia on a Medicaid waiver as she approaches graduation.
Dalia attends Centennial High School and will likely stay there until she’s 22 to receive her general education diploma. She’s in a self-contained classroom there. Rebecca says she likes the program and feels Dalia is getting a good education. She especially likes that neurotypical youth have positions as “peer facilitators” that they apply for in order to serve. Around one or two peer facilitators come in per class period.
Speaking of getting out and socializing, Dalia gets a lot out of socialization opportunities provided through Atlanta’s Jewish community, including programs like Friendship Circle and Birthday Club. Friendship Circle meets on Sunday afternoons monthly. Around 25 people with intellectual/developmental disabilities (I/DD) attend Friendship Circle each time, with 25 young volunteers paired with them one-on-one. The entire group then comes together in a circle where they practice the prayers that are used at worship, as well as the importance of tithing, or giving back to the community. After that, small groups rotate through a series of activities, including Zumba dances, cooking, soccer and arts and crafts.
If Rebecca had a chance to speak with a legislator, she would say, “First of all, there are people who are on the waiting list. We need to have a strong plan to get that list eliminated. It just breaks my heart.” She goes on to talk about how blessed she feels that Dalia has a waiver, but that we need to continue to fund and expand programs for people like her daughter. Even with what they have, she reflects, “There aren’t even speech therapists for adults like Dalia. So, in the next five years, before she turns 22, I’m definitely gonna want her to have a new device.”
Everyone fantasizes about their children growing up less fast, but as Rebecca’s thoughts turn to Dalia’s graduation not that far away, she says, “When you have little children, in some ways, people are more understanding. You know, they’re young, they’re small. But when you’re talking about a 17-, or 20- or 30-year-old person, it’s real stuff. It’s not just, ‘Oh, they’re going to grow out of it.’ This is a real situation that families are facing, and as much as I wished she would grow up all her life, now, I’m like, I sure wish she was 12 again.”