Pandemic leaves special needs families in limbo

Coronavirus

With Governor David Ige’s 5-tiered plan for reopening the state’s economy, childcare and education can now both be opened with safe practicing and social distancing.

The help for parents will take a burden off of those who are getting back to work, but there are still families with special needs children who are stuck without childcare and therefore, work.

Natalie Napoleon is a mother of four, including her youngest son, 4-and-a-half-year-old Iverson. “Bubba”, as he is lovingly called, is afflicted by an incredibly rare genetic disorder called Syngap1, which causes him uncontrollable seizures and makes him especially at risk of complications of COVID-19.

“It is such a scary thought his neurologist told me if he catches this it could be detrimental. Like he might not survive this,” Napoleon said.

If Iverson were to get symptoms, his condition has rendered him unable to speak.

“Due to his health condition he is non-verbal so if he gets any symptoms he can’t tell me ‘Mom I can’t breathe.'”

Prior to the pandemic, Iverson was in pre-school, allowing Natalie time to work. Now, she is unable to get help from family members to care for Iverson, as they’re all concerned about spreading the virus to him.

This has forced her to stay home from her full-time job in physical therapy to care for her children, rendering her ineligible for unemployment and so far unable to get through with the Pandemic Unemployment Assistance (PUA) program.

“I have a full time job, I’m totally grateful for that. How am I supposed to get to my job if nobody wants to come near my son?”

She hopes her story can open eyes that many other families are going through the same, and some of our most impacted families are falling through the cracks of the system during the pandemic.

“They’re essentially living in a prison in their own home. They are confined. He used to love going to the park he used to love seeing friends at school. He learned a lot from other children but now it’s like ok you’re secluded.”

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