JOHNSON CITY, Tenn. (WJHL) – As schools in Northeast Tennessee begin to ease into the academic year, many families are trying to work through the “new normal.” However, families with disabled children are discovering that their “new normal” is not going to be easy.
News Channel 11’s Bianca Marais spoke with two Boones Creek Elementary School families who both have children with special needs. They started classes last Monday, but are still adapting to the new way of learning.
Lucas Greene is a 7-year-old with a rare genetic condition called Cardiofaciocutaneous Syndrome, and requires 12 hours/week of in-home/private ABA therapy. The family was happy when his IEP was amended to accommodate his rigorous ABA therapy.
However, after three months without services, his mom says he has, unfortunately, experienced regression.
“That part was bad because we lost everything, we lost all of his structure that he gets through school and therapy and kids crave structure,” Sara Greene explained.
She said the Washington County School District has been working well with her family.
“Our first meeting with the school this year was just to discuss what will Lucas’s day look like because he can’t sit in front of a computer all day, he can’t attend or pay attention to anything for that long, plus he would be likely to just toss it,” Greene added.
As school has already started, Greene noted that Lucas has been enjoying watching his teacher’s virtual classes.
“She’s asked that we go in and just let him watch them during the day and I noticed that the first time I let him watch one of them, he started rocking back and forth, which is kind of his way of dancing and he recognized the song, and he recognized his teacher’s voice – I could tell – so that was very pleasing to see,” she said.
Boones Creek Elementary School first grader, Eden Millar, was diagnosed with HyperIGD syndrome about a year ago. Her mom Dr. Stacy Millar is a physical therapist and explained it as an extremely rare genetic disorder with only 400 reported cases globally.
HyperIGD syndrome prevents the production of an enzyme that stops inflammatory processes in the body. Eden is in a constant state of inflammation, including “flares” that can spike her fever upwards of 105 degrees, while attacking the spleen and kidneys, Millar explained.
She added that Eden also has some intellectual development issues.
“We don’t really know how to help her intellectually, like the services she would receive in school,” Millar said.
Virtual lessons have made it easier to keep Eden safe.
“She is on immuno-suppressants, so it’s a little bit scary to send her to school with everything going on,” Millar explained, but added that there is no substitute for a traditional classroom.
“It’s extremely important that children have socialization, and that’s a lot of what Eden is all about – she loves to socialize with her friends,” she said.
Millar is part of an advocacy group fighting for kids with complex medical needs and disabilities called the Little Lobbyists.
“That’s the big thing that we really advocate for, is that everyone working together, everyone in the school district, federally, parents, teachers working together to include these children with disabilities,” she explained.
According to the latest reopening plan by the Washington County School System, no guidance listed for special needs students in the “red zone,” which is defined as an average of more than 11 new COVID-19 cases among Washington County residents over the prior 14 days. The plans says that Washington County Schools will operate on a virtual protocol under this scenario – which is exactly what happened.
However, under the “yellow zone” threshold, special education students in self-contained classes will go to school subject to social distancing and the availability of staff.
The “yellow zone” is defined as an average of 6-10 new COVID-19 cases among Washington County residents over the prior 14 days. Washington County Schools would operate on a staggered schedule under that scenario.
Both parents said they are holding onto the hope that their kids can return to school soon.
“I know he will be super excited when the school bus rolls up the first morning that he does get to go back because he absolutely loves riding the bus,” Greene said.
Continuing coverage of the COVID-19 coronavirus pandemic.