Greater Harrisburg's Community Magazine

Special Time, Special Needs: COVID has impacted families with special needs children in unique ways

Jayla with her augmentative and alternative communication device.

Schooling children adequately during COVID-19 has been an immense challenge, but especially for special needs children, their parents and educators.

Six-year-old Jayla, with her pixie haircut and smart-looking eyeglasses, chewed on her sleeve as she watched her mom talk on Zoom. Her mother, Hampden Township resident Stephanie Lane, spoke about schooling Jayla during COVID-19.

“She doesn’t want to get online, and getting her to sit in front of a screen and follow along is hard,” Lane said.

That would describe many students in this year of alternate schooling. But “Miss J,” as her family calls her, has what her family tells her are “special genes.”

Those genes cause Poirier-Bienvenu neurodevelopmental syndrome, resulting in a cocktail of symptoms, such as low muscle tone, developmental delays, severe speech disorders and learning disabilities.

And they make schooling during COVID-19 a challenge that sometimes seems impossible.

Lane has to sit with Jayla constantly because she won’t stay in her seat alone, she can’t unmute herself in the Zoom, and she is often completely lost during class.

Jayla receives pullout services for math, reading and writing, which, when school is in-person, would take her to a different classroom. But when school is virtual, it means going to a different Zoom session.  But coordinating all of these sessions is often unachievable.

“It doesn’t all work,” Lane said. “She ends up missing the wrong parts of class.”

So, she’s often in class with non-special-needs children. With a pinch of frustration on her face and a crack in her voice, Lane described math class.

“The last time we went virtual, she was in a regular class for math,” Lane said. “But the math she doesn’t understand because she can’t count past 10. So, they were doing teens and 20s, and she’s just not comprehending it.”

Lane said that the teacher did the best she could, but Jayla can’t write the numbers. There are times when Lane can coordinate getting into the best class for her daughter, but some of them overlap, and she feels like she’s between a rock and a hard place.

“It’s like a big juggling act,” Lane said.

COVID prevented Jayla from having an updated individual education plan to start her kindergarten year of school.

When school began in September, Lane was beside herself because the school was unaware of Jayla’s disabilities.

“How comfortable does a parent feel sending their child to school, who can’t even verbalize they need to use the bathroom?” Lane said.

Not the Same

Unlike Jayla, 17-year-old Evan Book enjoys his Zoom lessons. With an impish spark in his eye, he’s happy to pop onto the screen to see what’s happening.

Evan’s medical condition is what the ICD-10 Code Book, which categorizes medical illnesses for insurance purposes, calls “other neurologically impaired.” Evan experiences severe apraxia, a motor planning disorder, intellectual developmental disabilities, epilepsy and severe lack of muscle tone. But his mother Abby described him as extremely social. So, Zoom is a fun event for him.

But it’s still not the same.

“It’s really, really, really hard for him to be in the house all day and to not interact,” Book said.

Evan relies on his parents, in their Boiling Springs home, for his social time and can be demanding when not entertained.

“I sit and read to him, play with him, and he can be like a golden angel child,” Book said. “But I have to work and my husband has to work.”

Evan has been in and out of school many times since September, and the transition between virtual and in-person is taxing. The interruptions have interfered with learning and the therapies that he receives.

“The thing is, with many kids with special needs, the inconsistency is really hard,” Book said. “So it’s like, two steps forward, 10 steps back. It’s not like you can just make that up.”

Book and Lane would both like special education students’ needs managed separately from the typical students during the pandemic.

The West Shore School District (WSSD) has tried to do that with its “low incident” special education students, those who have more severe disabilities, like Jayla and Evan. These students meet five days a week. But that decision wasn’t an easy one.

“It’s important that the community knows that, when we make decisions, we don’t make them lightly,” said Geraldine Ryan-Washington, director of special education for the WSSD. “And that we really do care about their kids, and we want to keep them safe.”

She described the first months into the pandemic as shifting sands, decisions being made, then reversed within hours of making them, due to changing COVID mitigations.

“We’re lucky that we have such a strong admin team here so that we were all able to get it done,” said Ryan-Washington. “And you can count on the teachers to do what they need to do.”

Return to Routine

Both Lane and Book feel that the schools and teachers are working hard to help their children.

“It’s not even the school district’s fault,” Book said. “I mean everybody’s trying to do the best they can in it.”

Lane said that Jayla’s school has been phenomenal, but is frustrated with some of the district’s decisions and having to fight so hard to get Jayla what she needed.

“They’re trying to do everything, but it seems like, through this whole thing, the special needs kids have been left behind in some way or another,” she said.

Book suggested that school districts “red shirt” special education children. She said they’ve lost a year of “normal” schooling and that an extra year could help these kids make up lost progress.

Jayla wants normal school back in session. Because of the constant shifting from in-person to virtual learning, she’s never sure what to expect. After a frustrating day of virtual school, Jayla will ask, in a way that only her mom could likely comprehend, “Am I going back to real school yet?”

A return to routine is what these parents of special needs children want for the new school year. What do educators hope for these students?

“That is the full components of their high school, whatever school experience…everything that they can gather from it,” Ryan-Washington said. “So basically, what we want for kids with significant disabilities is the same thing we want for all kids.”

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