“When we got that diagnosis, we felt totally in the dark.”
Photo courtesy of Jennifer Cohen
Elaina volunteering at the Healthy New Albany Community Garden
Jennifer Cohen explains how she and her husband felt when their daughter, Elaina, was diagnosed with Mowat-Wilson syndrome at two
Now, Elaina is 15 years old and excelling at New Albany High School. Her family is proud to celebrate March as Developmental Disability Awareness Month (DDAM) and acknowledge not only how far Elaina has come but also all of the support they have received.
The Cohens are originally from Fort Wayne, Indiana, and eventually moved to Kentucky, but had trouble finding a doctor there that knew much about Elaina’s condition. It wasn’t until relocating to New Albany that the Cohens felt they received the best care for Elaina.
“(The school said,) ‘She’s getting an aid, she’s going to get speech, OTP, PT and adapted physical education,’ and I’m like, ‘Whoa, we did not have any of that in Kentucky,” Cohen says. “It was really cool that the school system was so supportive of making sure that Elaina was going to have everything she needed. And I feel very fortunate that they guided me through that versus me having to ask for it.”
School Support
Photo courtesy of Caitlin Miller
lucy in front of classroom door at school
Caitlin and Scott Miller, friends of the Cohens, also have a daughter with a developmental disability. Nine-year-old Lucy has DDX3X, a rare neurodevelopmental disorder that causes speech difficulties or delayed development of speech and language.
Caitlin echoes Cohen’s sentiments about New Albany being an inclusive place to live for families raising children with developmental disabilities. She says New Albany schools are really receptive to accessibility updates, whether that means getting rid of an inaccessible curb or making sure every building has handicap push buttons.
Caitlin has found similar comfort and support within their New Albany community as the Cohens. She and Scott decided to move to New Albany on a whim, despite neither of them having visited Ohio before, but she says she doesn’t regret a thing.
“We do feel so fortunate that we landed here because I feel like everywhere we go with (Lucy), everybody knows her and everybody is really sweet,” Caitlin says. “Kroger is one of our favorite spots to go (because we) run into teachers and staff members and they're just really sweet.”
Caretaker Community
A child with disabilities requires a lot of attention and care that can be emotionally and physically demanding for parents or the child’s caretaker. Caitlin is Lucy’s full-time caretaker, and does everything with Lucy on a daily basis including getting her dressed, taking her to and from school and doctor’s appointments as well as zipping her into her safe-sleep bed at the end of the day.
According to the Child Mind Institute, “parents who are the main caregivers for kids with special needs can be at risk for burnout, especially if they don’t have enough support themselves.” A study from the Physical Medicine & Rehabilitation Clinics found that there is a higher incidence of migraine headaches, gastrointestinal ulcers and greater overall distress in parents of children with disabilities.
This stress is why Caitlin and Cohen are currently in the process of setting up a support group for New Albany-Plain Local School District parents of children with disabilities. The group will be a space for parents to relate to others who are in a similar situation.
“(We’re starting the group) just to be able to have somebody to be able to sympathize with you or be there with you or even laugh or to cry to you, whatever,” Cohen says.
Caitlin says the two have a variety of topics in mind that they hope to discuss with the group, like community resources, extracurricular activities or the stresses of IEPs and doctor’s appointments. They would also like to start a similar group in the future for siblings.
Adding Awareness
Photo courtesy of Jennifer Cohen
New Albany Special Olympics Cheer
In August last year, New Albany opened Taylor Farm Park, which boasts a rubberized play surface intended to provide accessibility for all abilities. New Albany also holds a few events for children with disabilities including a Polar Plunge. This year’s event happened in February and raised more than $10,000 for Special Olympics Ohio and New Albany Special Olympics. Throughout the awareness month, Cohen says New Albany school hallways are decorated with educational posters and bulletin boards.
“I feel pretty fortunate that especially in the primary and intermediate buildings, the kids are super inclusive,” Cohen says. “I think they do see (kids with disabilities) as different but they’re willing to interact with them. They’re willing to try to be friends with them.”
Caitlin has the opportunity every year to send Lucy’s siblings, Brooklyn and Austin, into her classroom to give a presentation and educate Lucy’s classmates about her disability. Caitlin says it helps open the floor for kids Lucy’s age to ask common questions about her disability.
“The kids have been wondering why (Lucy) does all these things. And so for (my kids) to be able to answer back the best they can; it’s cool for our children but also great for the students just to learn more about different disabilities and to understand,” Caitlin says.
Elaina’s siblings have gotten a similar opportunity to not only educate her peers about Mowat-Wilson, but also how to be friends with Elaina.
“Even though she has special needs, she’s very much like a normal kid and what she likes to do and her activities and what she can participate in,” Cohen says. “It’s just she has to do them a little differently.”
Ava Huelskamp is a contributing writer at CityScene Media Group. Feedback welcome at feedback@cityscenemediagroup.com.
