Service Dogs in the Pandemic – Part One

It’s been months since I’ve been able to share stories with you here on the Easterseals blog about the questions little kids ask about working with Luna, my Seeing Eye dog. School closures this year means our presentations to students were cancelled, too. I miss them!

Big kids to the rescue! The memoir-writing classes I lead for older adults have been meeting via Zoom, and here’s a sampling of questions writers in those classes have been asking me lately, along with some answers:

    • Did Luna notice that Mike was starting to feel sick? My husband Mike was sick at home with COVID 19 in Mid-March, and as he likes to say now, he and I had established “separate kingdoms” at home during the week he was sick here. I slept on a pull-out bed in my office, his kingdom was our bedroom, and as his illness continued to get worse, he spent days and nights in bed there with the door closed. And yes, Luna missed him.I didn’t want to be far from home during that time, so I donned a mask, wore disposable surgical gloves, and kept Luna’s walks very routine. And short. Boring for her, and she expressed her ennui by lying flat on her stomach with her chin on the floor.

  • After Mike was admitted to the hospital, do you think Luna knew he was gone? Yes. Mike was in the hospital seven days in March with COVID 19, and before he was allowed to come home he had to spend three additional COVID-free days in a Chicago hotel designated for patients recovering from the virus. During those ten days, I kept the door to his kingdom closed tight for fear of being exposed to the virus. . Luna started looking out the window hoping to find him somewhere out there.
  • How’s Mike doing now that he’s home?He’s still recovering, gaining strength every day and playing lots of games of catch with Luna.
  • So Luna likes to play? Yes! When their harnesses are off, it’s good for Seeing Eye dogs to play and relax. Dog parks in our area are closed right now, so Luna is left to chase her ball and Nylabones around the house. Mike throws a ball better than I do, see above about her searching out the window for him while he was away.
  • Was it hard to take care of Luna when Mike was in the hospital and you were all alone with her? The Seeing Eye trains all of its graduates to care for our dogs on our own, whether we live alone or with others. It’s dark when she goes for her last outing of the day, and for safety’s sake here in the city he usually takes her out for that final “empty.” Without him here, I donned a mask for Luna’s nightly walk and, assuming bad guys are staying home during the pandemic, I wasn’t scared.
  • Does your dog get confused when you wear a mask? Well, she doesn’t balk if I’m wearing the mask and call her to come, and she follows my commands en route, which means she can hear my muffled voice through the mask. Her sense of smell is wayyyyyyyyy stronger than her sense of sight or sound, so if anything is confusing her right now, it’s my aroma: I didn’t used to wash my hands every 20 minutes!
  • Was Luna a comfort to you while Mike was sick? Luna was a tremendous comfort to me throughout Mike’s illness. She’s a good listener.

Stay tuned for Part Two, when I’ll talk more about what sheltering in place with Luna is like now, with Mike home and things back to normal –whatever that is!

 

Therapy Guidance for Parents of Children with Special Needs

Marsi holds her son, a toddler, Langston 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.

 

Opinion: Why Reopening Early Frightens Me

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.

 

Navigating Teletherapy During COVID-19

A young lady wearing a shirt with the Easterseals logo on it and pajama pants, standing in a hallway at her houseEveryone 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.

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.

 

 

How Can You Tell Someone is Smiling When You Can’t See Their Face?

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?”a woman is with her guide dog and is wearing a mask over nose and mouth and a long coat

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.

 

DJ Mermaid’s COVID-19 Diary: “DJ in Isolation”

A young lady wearing glasses and a cloth face mask with flower printI 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!

 

Alicia’s COVID-19 Diary: The Importance of Mental Health

A picture of Alicia smiling, sitting on a couchThose of you who know me or follow me on social media know that after I graduated from college late in 2019, a friend of mine had coined the year we’re in now, 2020, as “the year of firsts.” The phrase had a nice ring to it, and it carried me through the rest of 2019 with a sense of hope for a better year: a clean slate, a fresh start, newfound hope and motivation. I had a lot to look forward to.

2020 started out great. I wrote a post in January about flying to Houston to visit a friend, spending a week in 70-degree weather, making new friends and being out and about for 12 or more enjoyable hours every day I was there.

Once back home, I looked into teaching iPhone and iPad classes at The Chicago Lighthouse (I had seen a class while I was in Houston and thought to myself, “I wouldn’t mind doing this every day”). With so many possibilities in front of me, I couldn’t foresee a downfall. There was so much excitement that it was hard to keep up.

I still remember jokingly telling a friend back then that life needed to slow down just so I could process everything. And I think the universe heard me. Life didn’t just slow down — it came to a screeching halt.

March 8, 2020, is the last time I was in a room, face-to-face, with a friend. I am writing this on April 17, which means it has been one month and nine days since the last time I enjoyed a real live conversation with a friend.

But who’s counting?

If you know me, this is not normal for me. I am an extrovert. I get energy from other people. I’m usually out once a week…at the very least.

At first, I looked at this quarantine as a silver lining, a chance to get back into my hobbies. I wanted to read more, and now I had all the time in the world. I couldn’t see my friends in person, but I was able to connect with them online more – even some I hadn’t been communicating with on a daily basis before.

And then there’s this: I am spending more time with family now. I am staying at home with my parents, but I haven’t seen my siblings in person in a month. We do virtual game nights, but it’s not the same.

My two favorite country artists, Kelsea Ballerini and Ingrid Andress, released their albums one week apart, so that’s all I listen to. Ingrid Andress’ album didn’t have as many new songs, and the songs she did have were a bit more sad. I had to be in the mood for it. Kelsea Ballerini‘s songs were more upbeat, so I listened to that more.

But after a while, my attempts at keeping a positive attitude started to fade. Some days are tough, I won’t deny that. I worry for my friends, especially my best friend who is a certified nursing assistant at an assisted living center — she is likely exposed to the COVID-19 virus every day. I miss getting coffee with friends, and I know I could call an Uber and do the Dunkin Donuts drive-through, but I hesitate to do that. What if the driver had a passenger who had symptoms and didn’t know it? Then the driver is exposed, and we would be exposed, too. My blind friends and I talk about this a lot.

Right now I was supposed to be working – or, at least, somewhere in the employment process. And remember what I said about Ingrid Andress being one of my two favorite country artists? I was supposed to be going to an Ingrid Andress concert with a friend, which would have been the first time in my life I would have been going to a concert without a family member along. Due to the coronavirus, that concert was postponed — a major disappointment in what was supposed to be my year of firsts. My friend from Houston was supposed to fly here. We were supposed to get a group together and go for lunch like we always do. We were supposed to go downtown and visit friends in Chicago.

When I start to get overwhelmed and caught up in everything I was supposed to be doing – everything I’d had to look forward to – I pull myself out of it as best I can.

One thing that helps? I do yoga with my mom every day. It took me a very long time to get into yoga. At first I did it because I knew my mom liked it when I joined her, but after a while I have really come to like it.

Truth is, long before the coronavirus — I mean, wayyyyy before this, like three years ago — I was in counseling, and when I opened up about anxiety, counselors would ask, “do you do yoga?” They’d tell me it’s a good hobby to take up, especially if you’re feeling anxious.

The next time I’m asked if I do yoga, I can honestly answer, “Yes!” More than ever, it’s important to do what you can for the sake of your mental health (for those of you reading this who are into yoga, my mom and I are subscribed to Yoga with Adriene).

I spend time outside when I can, either going for a walk with my parents or just sitting on the deck drinking coffee and listening to an audio book. I make lots and lots of phone calls and am constantly texting. I’m still in touch with my friends in Houston — we have a group text chain going on What’s App Messenger – and everyone is asking me when I’m coming back to visit again.

So what’s keeping me sane…and hopeful? Those simple pleasures. They really put things into perspective for me.

 

DeafBlind Community Speaks Out About COVID-19 Fears

Photo of Beth and her black Lab.

That’s me in my big red coat along with my Seeing Eye dog Luna in January, before we started sheltering in place.

I live on the seventh floor of a high rise in Chicago. These days I don a mask and disposable gloves any time I have to leave the apartment. When it’s time for me to take my Seeing Eye dog outside to “empty,” she knows to guide me through a long hallway right to the buttons. “Luna, sit!” I say, and she stays still as I put on my disposable plastic gloves and feel for the one that says “down.” When an elevator dings twice, I know it’s arrived and will be going down (one ding means up, two dings mean down). I point that way, command “forward!” and Luna leads me to the opening. “Anybody in here?” I ask. I’m not so sure our elevators here are even six feet wide, so if someone answers, I urge them to go ahead without us: I’m not pressed for time.

I’ve made a great discovery in the past four weeks: when wearing plastic disposable gloves, you can still feel the Braille dots in the elevator! Assuming bad guys are staying home during the pandemic, I am fearless when out with Luna after dark for her final “empty” of the day. Once outside, without being able to see, unless people talk — or walk — loudly, it can be difficult to judge what six feet is, but Luna and I do our best.

Read those last couple of paragraphs again and you’ll notice how heavily I rely on my sense of sound to navigate the world and keep myself –and others –safe: one ding from the elevator tells me it’s about to head up, two dings means it’s going down; if no one responds to my question at the elevator doors, I know it’s okay to enter; using footsteps, along with a little eavesdropping, to alert me where others are and allow me to do my best to keep a required six feet between us.

How would I accomplish all this if, in addition to being blind, I couldn’t hear? A Washington Post article called They are deaf and blind, and social distancing has now taken their ability to touch answers that question. The article addresses how important the sense of touch is to those of us who can’t see, and, especially, to those who are both deaf and blind. “The DeafBlind community includes people who have zero ability to see and hear, and those who have so little that they have been medically deemed deaf and blind,” the article explains. From there the reporter interviews individuals from all over the country who are DeafBlind to ask how they are faring during the unthinkable times we are living in now.

While I couldn’t relate to all of the experiences , some of the things people who are DeafBlind are going through do, dare I say, ring a bell:

  • Social distancing creating unique worries and exceptional challenges
  • Isolation forcing us to grow increasingly disconnected when, more than ever, we need to be aware of what’s happening around us
  • It being uncomfortable to rely on your sense of touch at a time when grabbing a doorknob or standing closer than six feet from a stranger carries risks.
  • The story pointed out a feeling many of us with disabilities have right now: the worry that hospitals facing scarce resources will decide not to save the lives of those of us with disabilities. Haben Girma, the author of a memoir titled Haben: The DeafBlind Woman Who Conquered Harvard Law, was interviewed for the article and told the reporter that ”there is an ableist assumption that causes some people to think it’s better to be dead than disabled” and that, plus the worry that she might not be able to communicate with medical staff if she does end up hospitalized, is what keeps her up at night now.The story ends with a quote from an email message sent by Ali Goldberg, a DeafBlind student at Gallaudet University majoring in education who uses tactile sign language to communicate:

    In that email, he described feeling “afraid for the future.”
    He also expressed an appreciation for being able to talk about how social distancing is affecting him and a hope that it would help more people understand what the DeafBlind community is going through right now.
    The experiences of the DeafBlind community may be unique, but their concerns shouldn’t be theirs alone.
    “As a Deaf-Blind individual like myself, we are left out of everything going on around us,” he wrote. “Let’s get through this together.”

 

Celebrated Actors with Disabilities Team with Easterseals to Encourage Us All to #StayHomeSaveLives

Screenshots of celebrities from the Easterseals PSA Introducing our guest blogger for today – Mark Whitley, president & CEO of Easterseals Southern California.

Over the last few years, Easterseals Southern California has made a concerted effort to partner alongside the entertainment industry to advance disability representation and inclusion across film and TV. Because we believe quality storytelling – the compelling, authentic, honest and entertaining stories we all consume – have the power to alter our hearts and minds, shift our perspectives, tackle deep-rooted stigmas, reverse misconceptions and ultimately, change the way the world defines and views disability. Simply put, good stories can change our society for the better.

You’ve likely seen or heard of our key efforts including the Easterseals Disability Film Challenge or the Media Access Awards presented by Easterseals. And if not, I’d encourage you to dive in and watch some of the powerful films and TV highlighted within each – it makes for great binge-watching while we’re all safely holding up at home.

Through our collaborative work here in Los Angeles, Easterseals has made incredible friends, who are actively working at all levels of entertainment to advance disability inclusion, while, at the same time, building tremendous careers and sharing their many talents with all of us. And, these very same friends – celebrated filmmakers and actors with disabilities – have now volunteered their time, without hesitation, to help Easterseals share a critically important message about safety during the COVID-19 pandemic.

Check them all out in our brand new #StayHomeSaveLives PSAs – watch them now!

Virtually everyone featured in the PSAs has also, in some way, been involved in the Easterseals Disability Film Challenge, including Nic Novicki, the Film Challenge’s founder/director and member of Easterseals Southern California’s Board of Directors. Spearheaded by filmmaker John Lawson, the PSAs include clips and soundbites from 20 different actors with disabilities, including: Ed Begley, Jr., Coby Bird, Jamie Brewer, L. Scott Caldwell, Patrika Darbo, Tobias Forrest, Micah Fowler, Angel Giuffria, Jenni Gold, Danny J. Gomez, Sammi Haney, Diana Elizabeth Jordan, RJ Mitte, Daryl “Chill” Mitchell, Nic Novicki, Cole Sibus, Millicent Simmonds, Marilee Talkington, Danny Woodburn, and of course, John Lawson, himself.

The PSAs reinforce that we are all in this together, and asks us to self-isolate, stay at home, and do our part to stop the spread of this virus – especially because people with disabilities, older adults and individuals with chronic diseases may be particularly vulnerable. There are more than 61 million children and adults living with a disability in the U.S., making it the largest minority group in the country.

Here’s my ask of all of you – please share these life-saving PSAs with everyone you know! Through these videos, we see the strength and commitment of a multi-talented group of people, proudly representing the disability community and offering support to our communities in a meaningful and tangible way.

Now that’s what I call a good story!

 

Schooling at Home Especially Difficult for Special Needs Families

a young child is writing in a notebook in front of a laptop that shows a video their teacherFinding it difficult to have your children with special needs at home every day while their schools are closed? You are not alone. A story on NPR’s Morning Edition this morning featured a special education consultant in North Carolina who is working at home while she, her Husband and their two daughters shelter in place for the COVID-19 pandemic.

Most of this special education consultant’s work these days involves helping special needs families as they adapt to the new normal, and she has first-hand knowledge of what this is like: their oldest daughter is 12 years old and has Down syndrome.

“This tends to be a common theme with children with downs syndrome, they’re very sociable, people matter to them in ways that almost doesn’t have words,” she told the NPR reporter. “They love their people, and they need their people, too.”

While working at home, this mom says she tries to keep everyone on track, and her oldest girl out of trouble. Like her, most of her client families are in a survival mode at home as well, struggling to keep their children occupied and following school assignments at home. “I try reassuring them that getting through a day is really your success,” she said. “If learning happens, that‘s great, but if it looks like a hot mess, that’s okay, too.”

Easterseals is working with families facing the same challenges. If you haven’t already, take a look at some of the resources for parents who are looking after kids with disabilities while schools are closed.