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KBIA’s Health & Wealth Desk covers the economy and health of rural and underserved communities in Missouri and beyond. The team produces a weekly radio segment, as well as in-depth features and regular blog posts. The reporting desk is funded by a grant from the University of Missouri, and the Missouri Foundation for Health.Contact the Health & Wealth desk.

School Closures Create Additional Challenges for Parents of Children with Disabilities

Christina Ingoglia stands, holding her five-year-old daughter, Lilly, in her arms.
Provided by Christina Ingoglia

According to the Missouri Department of Elementary & Secondary Education, all 555 of Missouri’s schools are currently closed in an effort to slow down the spread of COVID-19, but for the parents of children with disabilities, this can present even more challenges.

Christina Ingoglia is the President of the Missouri Disability Empowerment, or MoDE, Foundation, and the mother of Lilly – a five-year-old who has cognitive disabilities from a rare genetic condition.

She spoke with KBIA’s Rebecca Smith about how she and her family are coping, and about how they are keeping Lilly busy at home.

Rebecca Smith: So, Christina, you’ve been home for about a week now. How’s it going with Lilly?

Christina Ingoglia: Yeah, so I would say, in general, things are okay with Lilly. She's in a great mood and she, health-wise, is quite stable, but because she has medical conditions that are complex too, we are taking a lot of precautions.

And I think because she's getting a lot more Mommy and Daddy time, things are okay so far. I mean, I think it will get old eventually, but, for now, everything's going well – but I will say that it's a little scary because the services Lilly gets through school and then our private services – so I'm specifically speaking about speech therapy, physical therapy, occupational therapy – she's really cut off from a lot of that.

But today we found out my husband, he works for the state and they have a really good insurance plan, that they'll cover occupational therapy through telehealth. So, we'll probably do some kind of FaceTime situation, and we're going to try it out and hopefully it will work for Lilly.

So, I feel really lucky, and I also feel really sad for most people who do not have access to that because therapy gives me a sense of what to do with Lilly, it makes Lilly happy, and then we can also measure her progress and push her to do more.

Rebecca Smith: Now, you're obviously very involved in the disability community here in mid-Missouri. What have you been hearing from other parents?

Christina Ingoglia: In connecting with friends through social media and other places, I think just a lot of people are scared, and it's a lot of parents who are feeling isolated. It feels like you know, you're taking care of your kids full time and you're working full time – and I do think that parents of typical children are, of course, facing challenges, you know, working from home and child rearing at the same time too – but I think we have this added layer, and I think that's what we're all talking about.

The guilt. The need to constantly be doing activities, and the feeling that your kid might be missing a major milestone if you're not pushing them enough, and, you know, you don't want to see regression, like where your child kind of falls behind where they were at. Yeah, it's really challenging.

Rebecca Smith: So, I'm wondering while all of this is happening, all the kids are at home, how are you and other parents trying to promote and preserve your own mental health?

Christina Ingoglia: Yeah, that's a great question. So, I'm fortunate that I have a partner that's very active, my husband, and so, we're trying to give each other breaks because the reality is we can't be doing therapy all day every day and we're not going to be a school environment. It's just not going to happen at home.

But we can do some things to help Lilly out, and also, I mean, I think Lilly is probably wondering what's going on – if she doesn't fully understand – and I also think it's important to keep her stress down. So, we're trying not to talk about the virus, but it is really challenging not to do that.

Rebecca Smith: Well, thank you so much, Christina, for joining me. I really appreciate it.

Christina Ingoglia: Thank you. Take care.

Rebecca Smith is a reporter and producer for the KBIA Health & Wealth desk. She was born and raised in Rolla, Missouri, and graduated with degrees in Journalism and Chemistry from Truman State University in May 2014. Rebecca comes to KBIA from St. Louis Public Radio, where she worked as the news intern and covered religion, neighborhood growth and the continued unrest in Ferguson, MO.