Dealing with the COVID-19 and Your Family

Originally presented March 16, 2020

by Dr. Spandana Nallapati, MD

Discuss what COVID-19 is, what is the most current status and how it can affect families with children with blindness, visual impairment and other developmental disabilities.

Transcript

Moderator

Hello, thank you everyone for coming tonight for an extra call regarding the Coronavirus and your child. And we’re very, very lucky tonight to have a speaker, Dr. Nallapati, who currently works as a Developmental Behavioral Pediatrician at Children’s Specialized Hospital in Jersey City, New Jersey. Dr. Nallapati graduated from Ross University Medical School in 2012, and completed her pediatric residency in Brookdale Hospital in Brooklyn, New York.

While relatively new to the industry, she’s quickly finding that being an advocate for parents and families is one of her greatest passions, especially those with inner city neighborhoods. In her time outside of work she shares a love of scuba diving, gaming, hiking, traveling and food with her husband. And she also spoke for us on Monday night and Dr. Nallapati, it was a wonderful call and we’ve gotten some great feedback. So thanks again for that.

Dr. Nallapati

All right. Good evening, everybody on this very beautiful Thursday. Yes, it’s Thursday, okay, almost, almost done team. Almost the weekend, although now I guess it’s not that much different than the weekday in some ways. But, I know that this is a very stressful time for all of us, and I hope that what you take away from this, if you take away one thing, is that it’ll be okay. We’re at the beginning of a very unknown path, but the world already is showing that there is an end to it. And there’s already a lot of good news coming out from all over the world. So, you know, we just have to take a deep breath and realize that, where we are, it’s the beginning of a bit of a nightmare for us, but we’ll get through it. We just have to get through it with information, patience, and especially for our children, how to manage our own panic, because even doctors can panic.

But parents and doctors, I feel, it’s about the same thing is it’s like a duck on the water- you never see the feet, you only see what’s above. So let’s jump in. And let’s talk a little about what this virus is and what’s going on. I apologize if some of these things seem a little too basic or a little too medical from the other end, but I really do think that sometimes, some basics get skipped in the news. And if I can convince my mother to one day turn off CNN for more than an hour in a 24 hour cycle, I would feel a great victory. But I feel like a lot of those media skip over the basics.

So, we’re going to talk a little bit about the basics, which is what is a virus?  A virus is defined as a pathogen that can cause disease, and can replicate on its own. Viruses look very funky. If you picture a UFO, I’m pretty sure you’ve pictured a virus. They come in many different shapes, and our little friend the Coronavirus is actually the spherical one. And this on the left side is what it looks like. And the reason it’s called corona is not because of the beer company, although I do feel a little bad for them. But it is because the edges on the outside of its shell. So it has a shell and it has little protrusions and the top of the protrusions look like little crowns. The little protein spikes that they use for various movements and attachments and such look like little crowns and that’s what it was called the Coronavirus.

Inside this envelope, or shell, is its genetic material that it replicates itself with and that’s how it grows. So that’s a virus. Now I could spend three hours on this alone, but just a little difference between bacteria and virus is bacteria tend to be sometimes 10, 20, 100 times bigger than a virus size-wise, but they cause symptoms that sometimes look alike. But of course, for bacteria we use antibiotics for viruses we use antivirals if we have it. If we don’t, we usually let the body fight it itself, for example like the common cold.

So, this PowerPoint is also going to be a source of information for you to spend time looking at. The next slide is actually three YouTube videos which we will not go through now, but each of them are not that long. They’re about 10 minutes long, some of them are 12 minutes long. I think you will have access to this PowerPoint. I want you to look through it, I want you to educate yourself on what this is because I feel that the more you know about something, the less it feels like an unknown and the more you feel like you have a little bit of power over it. The reason I liked these videos is because they show you what this is, why this is not a brand new terrifying thing, that it is a version of something we’ve already seen, and why knowing this is important, and finding a cure for it.

So, this is, as of today, how far the COVID-19 has reached, so all of us are in this together. As someone said from another country, we are all waves in the same ocean. This is hitting every poor, rich, white, brown, pink, purple, yellow- it’s hitting everybody. So, we’re all in this together and we’re all going to be okay. 

So, what is it? So just to sort of separate out the wording of it, c o v i d, that stands for Coronavirus disease 19. Now that’s actually the name of the disease it causes. The actual name of the virus is actually called SARS-CoV-2, which stands for Severe Acute Respiratory Syndrome Coronavirus 2. If the word SARS sounds familiar to you, it’s because it’s part of the coronavirus family. So Coronaviruses are a big branch of the virus family tree that include the SARS epidemic that we went through, MERS which we went through in the early 2000s, and several variants of the common cold. Rhinovirus is another big virus that causes the common cold and so is Coronavirus.

So, your children when they’ve had the cold might have had a version of the Coronavirus, it’s just that they didn’t have this specific one. If people just refer to this thing that’s happening to us as just Coronavirus, when they mean to say COVID-19. It’s kind of like saying a mammal when you actually mean a tiger. Coronavirus is the big family name. And what we are going through right now is with the disease of COVID that is caused by the SARS-CoV-2. Just a little bit of terminology.

How does it spread? The virus is thought to be spread mainly from person to person between people who are in close contact with one another within about six feet through respiratory droplets produced when an infected person coughs or sneezes and you’re within that six feet. These droplets can land in the mouth or nose of people who are nearby or possibly inhaled into the lungs.

Can someone spread the virus without being sick? While people are thought to be most contagious when they’re most symptomatic or the sickest. You might have heard that it takes five days after contact with a sick person for to show up. Sure, but when are they the most contagious? It’s when they’re the sickest. So, if you happen to be walking by somebody who is perfectly healthy, the chance of them having an unknown virus and they didn’t cough on you- the chance of you getting it is extremely low. Some spread might be possible before people show symptoms. There have been reports of this occurring with the new Coronavirus, but this is not thought to be the main way the virus spreads.

So, what are the symptoms? These may appear two to 14 days after exposure and that’s why the big thing about quarantining, the magic number is two weeks. If you want to be really careful, you add the two weeks and the five days that it sometimes takes after you know first hitting up against somebody and if you’re good and asymptomatic for that amount of time, then you’re okay. The big three symptoms that the CDC and the WHO, and the hospitals, have been kind of focusing on is cough, a very high fever and shortness of breath.

Now, this has caused a lot of stress because you can have a cough, I walked in the cold two days ago to my car and because it was cold I coughed once and I think I had three people turn around ready to tackle me down to the floor. People cough- if you have asthma you cough, if you have allergies, you cough. You really have to put the whole picture together. I think what’s scary and different about this is that most of the time, you could just go to your doctor and say, “hey, I’ve got a cough. And your doctor would say, well, what else do you have?” And they would make that decision for you whether or not you needed more help, or your child needed more help. In this case, I think people are being expected to take care of themselves and sort of diagnose themselves, and decide on their own, when it is time for you to go and ask for help.

And I think that’s causing a lot of the stress because if your child has a cough and shortness of breath because they’ve got asthma, and you think they might have a fever, in the past, you could say, well, I’ll just give you a treatment, and we’ll go to the pediatrician tomorrow, it wasn’t that much stress. And now, you say, what happens if I give them Motrin, they might get worse. And if I wait overnight, they might get worse, and they might not get tested. So, their fever is 101, it’s not 101 point something so I can understand the stress that this is causing. I think that it’s because we feel like too much has been put into our own hands without enough training. Trust yourself, know your history and understand that, while other things have these symptoms, you can put it into context. We, as doctors, pediatricians, we’re still available to give you an idea of what this could be and help you put it into context for you.

Now, I’m sure you are absolutely tired of hearing about this, but we’re going to just say it one more time. When you’re in the prevention phase, what do we want to do? We want to do the same things we’ve done every year when we’re sick. It’s just that we just have to be extra careful this time, but it’s nothing new. It’s nothing new to make sure that you have a clean house, especially now that most of you are “quarantined” is a bad word, but “stuck” is a better word, at home. You always wash your hands, I mean, you wash your hands, when you go to the bathroom, you wash your hands after you eat, you wash your hands if they get dirty. So it’s the same idea. When you go outside to the supermarket, you come in and you wash your hands. You don’t cough on people. You keep your house clean. The most stressful thing, I think, is the third picture. The most stressful is- stay home. If you do feel a little sick, my husband had a cold last week, and let me tell you, it was stressful. But you do the same things that you use to care for yourself all the time, you hydrate well. You take care of yourself, you try not to get other people sick, you don’t share your food.

Just a little note, and I think that this is as parents is why I made it into a whole separate slide because I think that we need to sometimes just hear this one more time, which is that children do not appear to be in the highest risk category when it comes to COVID-19. The symptoms are similar in kids and adults. So the kids don’t have any special things you need to remember. Children that have had confirmed disease have generally presented with milder symptoms.

Now, is it because kids are more prone to common colds and they’ve probably had some version of Corona in their last few years and they have a little bit more immunity? Most likely, and they have a healthy immune system related to others, most likely. There have been studies shown for reasons unknown that children with autism, a lot of them report, anecdotally, that they don’t get sick as often. They don’t get the common cold as often. And we’re not sure what part of their immune system causes this. But overall, and luckily enough, and I’m so happy as a pediatrician to report this, that the infection in children has been milder than in adults. And I hope it stays that way. And I think it will.

So, how to help their children work through these fears and uncertainties? I mean, I’m sure you love them, but being with them all day, every day, every moment of every day, is not exactly what families are ready for. And it’s important to understand that they are also going through the same stress and fears. Somebody shared a story very, very aptly, just before we started that, you know their child, it hit them that they couldn’t go to school and why they couldn’t go to school and why they can’t go and hang out with their friends at the mall. Why can’t they go to the movies? Why can’t they celebrate their birthdays? That stress and anxiety is going to make all of our children with behavioral issues even worse.

For a short time period, they might even need an increase if these children are on medicines that manage their stress, or anxiety, or ADHD symptoms. They might even need a slightly higher dose just to help them with their anxieties. But make developmentally informed decisions about what children need to know and understand in order to feel safe. If you have a child with intellectual disability, intellectual disability was formerly known as mental retardation. But if your child has an intellectual disability, or any sort of cognitive delay, explain it to them in the way that they would understand it best, not how a person that age would understand it best. If your child has autism, and they only understand black and white, yes or no, good and bad- don’t go too abstract with them. Make it clean, make it straightforward, make it factual, but you don’t need to give them every single fact.

Focus on creating an environment where children can ask questions that matter to them. Don’t say, don’t worry about it, they will worry about it. Talk to them. But also don’t leave CNN on for them to watch with you 24/7. Reassure children they’re going to be safe, and that you as their caregiver will also be taking steps to ensure that you stay safe as well. Children worry about their parents way more than you realize. I have kids wanting to get jobs, when they can barely handle their own anxiety, because they understand that their parents struggle to pay the rent. So understand that kids listen way better than you expect them to, and are stressed out about all the things you’re stressed out about, even if you don’t come out and tell them about it. 

Encourage compassion for vulnerable people and expand your child’s circle of concern. Now, you have to be a little careful when you do that. If they are too young and developmentally empathize, it might overwhelm them because they’re not quite ready for all of those feelings. So, you really have to know your child before you take that step. Avoid stigmatization by emphasizing that getting sick as part of being human. And we all need to help each other feel safe. I do think that you need to mantra this to yourself first. So, when you say this to your child, you believe it. I think that we aren’t quite there yet. So, we need to get there before we can take our kids there.

And that brings me to this very important slide. I do wish that you could see me, but we will still talk about it. But let’s look at the first one, managing your stress and anxiety before your kids and their concerns. Put the mask on yourself before you put it on your child on an airplane idea, it’s manage your own stress first. Go take that bath, go drink that glass of wine, if you need to, go to the second floor and just take a deep breath, go into the kitchen and take a deep breath. If you want, put that TV on so that you get five minutes in the bathroom, so that you can say, “I’m going to be okay, and so are my children.” And with so much stress happening, if you don’t do that, then you start off on the wrong foot.

Routines, and we were talking about this earlier, you have to keep the routines as strictly as possible. As possible is the key term there. If you have a child with autism, especially, or somebody with visual impairment, who really runs off of that schedule, we were talking about this a lot during our sleep lecture, is the importance of keeping weekday and weekend schedules. Just imagine that now tenfold. All seven days are sort of a weekend and you have to get them to bed around the same time. They have to wake up at the same time, and if you have to turn your house into a little gym to exhaust them, then that’s what you do.

This is a great time to make kids part of the family chores, so that they have something to do, but also that you’re not the only one cleaning up after them 24/7. And with visual impairment children you know that’s not quite as easy as saying go clean up your room. But every child can do something. Look around, even the smallest thing they can help you with, it means a lot to them that they can participate in the household.

We talked about the sensory relaxation rooms, when we were talking about the sleep, but once again, create a room, create spaces, if you don’t have a whole room to create it, to just relax. Whether that’s with other family members, or if that means separation from family members, that’s equally important.

For our children who have syndromes and who have diagnoses, reach out to your organizations and your specialists, and look at what resources they have for your children. Because if it’s especially a syndrome, every single organization that I’ve checked in on, they have some level of resources on their website. I know for sure that Autism Speaks and  Autism NJ has had, as well as autism.org has had a ton of resources on their websites.

Make sure that you get some screen-free time. This kind of goes along with the last one, which is, there are updates on an hourly basis, just get the update at the end of the day. Stop keeping track of it every hour, because that is only going to stress you out. And it’s going to stress your kids out. 

Having said that, let’s look at resources. So what I have done is I’ve done my best. And I’m sure that even between finalizing this, and this presentation, there’s a few that I’m missing in here. I always welcome more, but I’ve tried to do my best in filling your reach out to the organization’s part and the resources part of it, and I tried to give you as many resources as I can possibly give you. In fact, I think even this list is a little too much. Pick and choose whatever you’d like because a lot of these are made for children who don’t have visual impairment.

So, in the list, you might find a much shorter list that works for your child and their sensory issues. But a big issue is that our children are not getting their speech and OT. I unfortunately couldn’t find any PT. But, these are two websites that are fantastic for speech therapy activities that you can do at home. And then occupational therapy activities you can do at home. This also breaks the whole- okay, do your homework. Okay, we’re done with homework. Now, what do we do? If your child used to get speech therapy for 30 minutes every Tuesday, guess what, every Tuesday at the same time, you’re going to give them speech therapy. It’s just that you’re going to do it. 

The next few slides are all going to be full of these. So I just want to kind of touch on some of them. The SPED (Special Education) Guru is a blog of educational websites for children. Kidtivity is fantastic. It’s actually set out of Connecticut, on the east coast, but it has a lot of things to do with kids, there are screen-free activities. There’s about 20 on this list. Autism Speaks has a great COVID information and resources. And that’s one that I would go back to once in a while, because I think that there’s more coming. There are more webinars coming, there’s more and more coming and getting updated and this is why it’s important for you to reach out to your organizations.

There’s Learning Color which is a great free educational website. Save the Children has a great resource list. This is one of my favorites, actually, Mo Willems. Mo Willems, I swear if I had to read one more book of Mo Willems with my nieces, but he is doing lunch doodles. So around lunchtime every day, he is doing lunch doodles on YouTube. He’s putting them up. So that’s something great as a nice break. Scholastic has a huge, huge resource guide of academics that you could do with your children. I know that schools sent you home with enough homework, but if there are some things that your child used to get extra help for if they got pulled out of class for something, or if they’re especially weak in something- this is your schedule now. You can do with them whatever you want, and this is a great time to sort of break down what it is they have a problem with and really, really work on it.

There’s a great webinar that’s about to happen on autism.org, which you can sign up for. Virtual Field Trips is fantastic site, I love it. You can go visit zoos. You can look at animals, you can listen to things, you have virtual field trips. And I think that that’s always really fantastic. Boredom busters is a great little home activity for families to do together. I love the Center for Puppetry. It is going to be doing live streams of puppetry. Duolingo is really cool. It’s a bilingual website for language learning that’s hosting some great resources.

Project Kid is another one for activities. Cosmic kids yoga, and these are just for slightly older kids, but we have kids of all ages stuck at home, so I didn’t want to just put things for very young children. Jam with Jamie virtually, always dancing. I’m a big, big fan of dancing. There is an app, which is really cool also. Home Dance Class is also a great dancing one. For the really adventurous, super bored teenager, you also can always make a terrarium. I really liked the brainpop.com- teach kids abroad Coronavirus, because, as I was saying earlier, if they have questions about it, answer them, but in the simplest way possible. They always have some fun educational days. DIY spa day, you know those mother-daughter days or that father-son days that you guys can have. I think those are great.

There are story times- real astronauts from the space stations are going to be reading books from space. I think this is a live stream of puppies. I mean, come on just half an hour of puppy time. Who doesn’t like that? And, I told you this was a long list. So we’re not going to keep going and going and going. But just to give you an idea, there’s so much happening, that this doesn’t have to be necessarily the worst thing that has ever happened to us, which I know that’s what it feels like. But, how often do you get to look at the National Zoo, live broadcast from your home or watch otters play? And for anybody who hasn’t swam with a sea otter, which I have- they are like the dogs of the ocean. They’re so cute. They’re like the puppies of the ocean.

This is something that a mother has put together. This is a Google Doc. This mother put together this amazing list of resources, again, sort of similar to all of these, but you even more things. This might all have been a little overwhelming. But, I think that it’s important to keep ourselves busy. And this isn’t something that’s just for one week or two weeks, I would really plan on hunkering down for a month or two. And trust me, you’re going to run out of stuff to enjoy with your children, as much as you love them. So, I think for your sanity, and theirs, find stuff to do. Questions?

Moderator

Yes, before I turn everyone back on, I did want to share one more resource for our visually impaired. The digital curriculum to schools and teachers to use with their students with visual impairments to the end of the school year is being offered for free through www.objected.com/distance. And that’s a really good tool for our parents for sure. They are offering braille sheets and lots of specific tools for the visually impaired student. 

Dr. Nallapati

We have added yet another one.

Moderator

Okay, Linda, before I turn off the recording, I wanted to see if you had anything to add before I turn off the recording.

Linda

Lighthouse Guild has our tele-support groups for parents, which are still active and running and we hope to possibly add more to it. Those are all listed on our Lighthouseguild.org website. And we have our monthly presentations as well, similar to these, very informative, inviting guest speakers on a number of topics. And again, we hope to add more to that. If you, the parents who are on this call now, have suggestions or ways you think the Lighthouse Guild could help during this challenging situation we are in, you have my contact information. You can email me at GerraL@Lighthouseguild.org. But you should have my email on one of the communications you’ve got.