Marsi Jackson is mom to 2 and a half year-old Langston, who has Down syndrome and has been attending Easterseals DC Inclusive Child Development Center. 

At Easterseals, Langston receives a variety of services from a speech-language pathologist, physical therapist, and occupational therapist through the early intervention program to help overcome some associated challenges with mobility, play and communications.

Easterseals’ speech-language pathologist, Corinne Zmoos, MS, CCC-SLP, recently chatted with Marsi for this blog to discuss how they were doing during the coronavirus pandemic and find out how they were adjusting to the transition of receiving therapy services virtually.

Corinne: Thanks so much for taking the time to share your experience. First, can you tell me how has the outbreak of COVID-19 impacted your family’s life?

Marsi: For the most part, it has been okay, but there are moments when we really miss our extended family. My children miss their friends and I miss my friends as well. Just being able to go out and have lunch seems like a foreign concept. I never thought I would say, “What would it look like to eat with friends?” Now I think about every little thing. It has me thinking a lot about what is next for our family. What will our new normal look like?

Corinne: It really has reframed what “normal” feels like and looks like as a community. What role would you say Easterseals has had on your family’s life before and after this pandemic?

Marsi: Easterseals has been a great. I don’t see at it as just a daycare, but a place where my son could thrive with other children, his teachers, and his therapists. He is growing in ways I never thought. I don’t know of another place like Easterseals. I’m lucky to have gotten Langston in so early. Now, with COVID-19 creating stay-at-home orders, Easterseals has been reaching out and providing the same therapy services online.

I was excited to hear that because I was worried about Langston losing all of the skills he learned, but hopefully he’ll return with more skills. The therapy sessions actually give us structure and it helps me remember what day it is. It’s been go for good for all of us. It also gives me confidence that when we do go back, Langston will still be excited about Easterseals.

Corinne: Being able to work with you and Langston every week gives me structure, too! Can you share what it is like to be a mother of a special needs child during this pandemic?

Marsi: As a mom of a child with special needs, my initial concern was whether the coronavirus was going to make my child very sick, especially since he would be considered one of the most vulnerable. I was afraid to imagine what that would look like for him. When we first started staying in the house, I thought I had to keep up with his routines like in daycare. It was incredibly frustrating because I couldn’t get him to take a nap and eat when he was supposed to. Eventually, I realized that we needed to choose our battles and take it one day at a time. And I am grateful that he is healthy, happy, and I can tell he continues to thrive more each day.

Corinne: It sounds like you were concerned that the way you interact with him would not be enough for him to grow, and yet you can see that he’s thriving at home. What have you learned about yourself and your strengths?

Marsi: [laughs] That I can actually do OK! Langston has special needs and for the longest time I’ve always thought: I’m not a therapist, I am just a mom. So, I leaned on Easterseals to help him because you have people who specialize in helping children like him. But I’m slowly starting to let go of the ‘I’m just a mom’ idea. I have been looking up articles and researching different things I can do to help him learn. And I am grateful for all the strategies you have shown that I can do with Langston right at home. I’ve also come to understand and follow his cues more.

Corinne: That’s what I’m talking about! Your consistent enthusiasm and ability to follow his lead makes all the difference. What is the most encouraging lesson you have learned from Easterseals to be able to help Langston during this difficult time?

Marsi: The most important lesson I have learned from you is to see moments as an opportunity for learning. For example, when we are asking, “What is Langston doing right now?”, I always try and figure out how can we turn that into a learning moment. That alone has helped me gain confidence in myself when I don’t have access to your professional help.

While we’ve been at home, I have found moments to practice words, fine motor skills, and practice movement like crawling in any routine and I’ve been able to teach him the things I remember you have taught me. And if he’s not feeling it, I say that’s fine and I just wait for the next moment. In the beginning I did have doubts. I remember thinking, ‘I don’t know if this is going to work out. I’m going to fail. They’re going to be disappointed.’ Then, I remembered your advice that he will give me the cues and that’s when I can help him learn.

When this pandemic is over, I’m going to cherish these moments we’ve had staying at home together. I’m also grateful to know that if push comes to shove and we have to stay home again due to a lock down, this time I know I can do it. I feel confident of that because of Easterseals. And I know Langston can do it, too. Just watch.

Corrine: Finally, what do you want people to know about the impact COVID-19 has had on your community?

Marsi: For my community, the one thing I want people to know is to take seriously the recommendations of social distancing, wearing a mask, and not going out unless you need to. I know it’s hard because we want to be free to do what we want, but we have to think of others before we think of ourselves. All I can do is do my part and I’m hoping that by doing that, I can help someone else be okay.

Looking forward to our next Brewers game together, but we’re willing to wait.

Regular blog readers know about our son Gus – he was born with a rare genetic condition that left him with pretty severe developmental and physical disabilities. Since 2002, Gus has lived in a group home with three other guys in Watertown, Wisconsin. My husband Mike and I live in Chicago. Normally we get up north to visit Gus about once a month, but his group home has set up strict guidelines — no visitors. As difficult as this has been for all of us, we are comforted that our son is in good hands with people who have been going out of their way to keep a pretty vulnerable group of clients safe and healthy.

All the Direct Service Professionals (DSPs)—at his group home – those are the people who do the hard work of caring for people like Gus –are following strict PPE and cleaning protocols. The DSPs also took pledges to limit their own contacts outside of work. So while we’ve missed our visits with Gus, we haven’t been worried about his general welfare.

Until last Wednesday.

That’s when the Wisconsin Supreme Court struck down the state’s stay-at-home order. That ruling meant some businesses and restaurants could open immediately. The group home Gus lives in is in Jefferson County, halfway between Milwaukee and Dane County.

So here’s what I’m worried about: re-opening early means more community exposure. Staff coming in and out of the group home are more likely to unwittingly spread the coronavirus to Gus and his roommates, and people with disabilities of any age are more likely to have underlying health conditions that put them at greater risk of serious complications and death if exposed to the virus. A Wisconsin Public Radio story earlier this week reported that before last Wednesday’s ruling 32 state and national groups filed a brief laying out the increased risks of COVID-19 infection for communities of people who are older and/or have disabilities. From that story:

Many people from these communities live in long term care facilities and group homes, the brief notes, where there’s a higher risk that infections can spread. Plus, caregivers who provide in-person care and services are not able to social distance, and a shortage of personal protective equipment could put that caregiving workforce and their clients at risk.

The people who work with Gus and his roommates are often referred to as heroes. Rules or no rules, I hope we can honor them by doing all we can, including staying at home a bit longer, to keep them safe.

Everyone is impacted by this pandemic in different ways. Easterseals staff, therapists, educators, and volunteers are doing all they can to continue needed services in new and innovative ways through technology. However, the task can present its own set of challenges.  I’m pleased to share this personal account from Adrienne Krysiuk who is an occupational therapist at Easterseals of Southeastern Pennsylvania.

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On my first day of work, I was super excited to see my kiddos. It had been a few weeks since I saw them last. I was also super nervous and anxious about doing teletherapy.

A question I kept asking included:  How was I going to manage a caseload of 17+ kids and manage my own five year old?

But most importantly, I could not understand how I was going to effectively provide occupational therapy intervention with preschoolers who have Autism Spectrum Disorder through a little screen.

The 2019-2020 school year already had its own set of challenges, but all of us struggled to figure out how do this type of hands-off interaction with our Easterseals kids through a virtual platform. As we reflected, the slew of emails arrived and we really started to panic. We all started going to online trainings, reading blogs and asking questions, conducted team meetings and practice runs with our colleagues. We all became computer experts on Zoom and GoToMeeting. We connected with colleagues and families throughout the day, sitting and chatting for longer than any of us are used to. Then we became the minority of people who were still part of the workforce.

Since practicing teletherapy for a few weeks now, I am still trying to manage a hectic schedule between work and family. My son, at this moment, is trying to lay low because he knows he is getting away with watching too much TV and no one has been after him to do his school work for awhile.

The overall challenge of teletherapy has been a good learning experience and now familiar. In fact, at this point in time, I am a proponent of teleintervention and I feel this could be offered as part of the IEP plan. Of course, I would rather be working directly with my kids and coworkers, but we (the school team) have always discussed how beneficial it would be to have a better way to follow up at home. When you are working on certain skills, such as managing challenging behaviors or carrying over potty training, it would be very helpful to coach the parent more directly in the child’s home environment in order to bridge the gap between home and school and further support our kiddos’ success. This unfortunate pandemic event has been that opportunity, possibly causing positive change and providing more options and choices for our families.

Again, while looking on the bright side through this unique time, I also find myself appreciating the small things that helped me get through the day. One benefit I enjoy, and I know many people share this with me, is illustrated in the picture. I cannot complain about the reduction of my now nonexistent commute, being able to get ready for work in 15 minutes or even caring if my comfy uniform matches or represents the correct season. I’m dressed in my Easterseals teletherapy uniform.

To say the least, it has been an adjustment period for the parents too and I give a shout out to all of our special needs parents out there. We see you and you are doing a great job, so hang in there! We got your back.

A friend just sent an email asking for my advice. Subject line? “How do you recognize a smile when you can’t see the face?”

Starting May 1, 2020, Illinois residents are required to wear masks in any public situation where we are unable to keep a six-foot distance from others. My friend understands the necessity to wear masks, but it’s all bumming her out. “You know me,” she wrote. “When I’m out doing errands, I amuse myself by trying to amuse others.” What now? How will she know her jokes are funny if she can’t see people smiling?

Under normal circumstances (remember those?!) I can hear a smile in someone’s voice. That skill didn’t come automatically when I lost my sight. They didn’t teach us that at the rehabilitation center I was sent to after losing my sight, either. I had to figure it out on my own, and that took time.

I wasn’t blind long before discovering how much I’d relied on lip reading to communicate back when I could see. Lip-reading, and body language, too. You see a person look at you, maybe give you a nod, and start moving their lips? Odds are they are talking to you. Now, sometimes, I don’t have a clue.

Anyone seated on a stool next to me at a local diner would inevitably witness my difficulties in addressing the server. I hear one come near, they ask, “More coffee?” and I assume they are talking to me. If they’re not, and I respond? Awkward.

Ditto those times when a pharmacist, a bank teller, a post office clerk, a TSA employee, a ticket counter worker (actually, any circumstance where I have to stand in line) calls out, “you’re next.” After inadvertently cutting in line hundreds of times, I finally figured out to point at myself and ask, “Me?” before making a move.

And then there’s the time my husband Mike and I sat down at a bar we didn’t frequent much and I asked a bartender what they had on draft. Little did I know I was sitting smack dab in front of all the beer pulls. The bartender pointed at the pulls (I think) and said, “What are you, blind?”

Good guess.

But back to smiles. When I first started recording essays for NPR, radio pros there encouraged me to smile while talking on the radio. “A smile comes through even when you can’t see the person who is smiling,” they said. “Even if you are saying something that isn’t exactly funny, you should smile: it engages listeners.” After that I started hearing smiles on the radio. (For a good example of a radio announcer who smiles when reading announcements, ask your smartspeaker to “play WBEZ” in the afternoon and listen to our Chicago Public Radio All Things Considered host Melba Lara — she’s always smiling, and always engaging).

It wasn’t long before I could detect smiles in everyday life, too. When I’m not quite sure? I can always turn to Mike. “Does Emily have a pretty smile?” I might ask. “She always sounds like she’s smiling.”

With many states requiring masks in public now, voices are muffled, lip-reading is impossible, judging whether people are addressing us is more difficult. So how can my friend know someone is smiling without being able to see their face? With no evidence to the contrary, just picture they are.

I am pleased to have 13-year-old guest blogger Anja Herrman back with us today. I got to know Anja very well when she was nine years old and learning at home during a casting program (casts on both legs from her hips down to her ankles). She was schooled at home for two months back then, and I was her at-home writing tutor. Many of her completed assignments were published as guest posts here on our Easterseals National blog, and you can read this post from 2016 to learn how and why she had all her posts back then published under the pen name DJ Mermaid. An 8th grader now, DJ Mermaid is a Disability Activist and goes by her real name.

DJ in Isolation: A Guest Blog about Coronavirus

by Anja Herrman

Hello everyone! Firstly, I hope everyone is staying safe and practicing social distancing measures. These times can be challenging and wacky but hang in there. We will all get through this together.

School, for one, is different, to say the least. Now, instead of trekking to school, I get to lie in bed and complete my assignments. Great, right? Well, five years ago when I spent months at home with my legs in casts, I wrote a DJ Mermaid post called A Day in My Fin, I am bringing back that old blog post idea and am showing you “A Day in my Fin”-Coronavirus Edition.

• 8:00- Wake up, flip over and pick out a book to read for a while
• 8:45- Finish book and eat breakfast. Usually, this is normally something really good since my mom is home all the time now and has hopped on the baking train-hard!
• 9:00-9:45- This is school time. Usually, I am done pretty quickly since my school is adapting a “social emotional learning” approach during coronavirus
• 10-11: I usually do a multitude of things during this time- go outside, play scooter basketball, do a puzzle with my mom- anything to take my mind off coronavirus
• LUNCHTIME- Food is definitely the best part of my day. I am obsessed with Trader Joe’s line of frozen Indian dishes. They are amazing!
• 1:00-3:00- Usually during this time I listen to an audiobook. I finally got an Audible membership, since they have made certain books free while schools are closed
• 3:00-5:00- I play The Sims 4 during this time. The franchise is starting their #StayandPlay hashtag and I love the fact they are doing this during quarantine and giving me time to relax. Also PSA: The Sims is a life simulation game and it is a great way to virtually live out your life normally.
• 5-8:30- We have dinner and have family time. Right now my whole family is watching Parks and Recreation together. Leslie Knope is super funny.

So, congratulations. you’ve made it through a day in my fin, quarantine edition!