Motivation is All Around Us!

by Jeanine Johnson

In my blogs, I often write about Easterseals, the students and the miracles I see on a daily basis. Recently I have been thinking about the life coping skills we can learn from Easterseals’ students. My daughter Autumn, who is currently one of Easterseals nurses, started out as a therapy aid. She had the opportunity to work closely with the students and I believe it gave her direction in what career she would ultimately choose. She left Easterseals and obtained her nursing certification. She knew she would lean toward working with young children. The opportunity opened and she returned to Easterseals. Autumn has in the past year and a half been hit with some life-changing health issues. First, she learned she has non-diabetic hypoglycemia, then was diagnosed with Elher’s Danlos Syndrome and lastly Mass Cell Activation Syndrome) (MCAS). With each diagnosis, I watched her pivot and adjust to a new normal.

I try my best to check in to see how she is coping because, while she seems to be adjusting well, I’m sure there are days when it’s overwhelming. She went from not having any medical equipment to having to wear MAFOs and in order for her not to lose her ability to walk independently, she is required to use a wheelchair for any extensive trips. Elher’s Danlos Syndrome is a condition where your connective tissue is too stretchy and cannot support your body properly. I am relieved that Autumn’s diagnosis does not affect her heart. She was wise enough to join some forums with people who have the same conditions and has been able to get great practical advice from people who are living and functioning with various issues.

We made a video call to our favorite Easterseals graduate Mung. (You know he’d make an appearance in my blog somewhere. 😊 ) He was confused as to why Autumn used to be able to walk and can’t now. Autumn explained to him that she can still walk. She told him that it’s like his muscles are very tight (he has CP) and hers are too loose). She told him she must wear the mafos for short distances and use the wheelchair for longer outings. Autumn, Mung and I met up at the Franklin Institute for the Harry Potter Exhibit. It was Autumn’s first trip taking her wheelchair in an Uber. (She got enough good advice to pick one that would be easily portable when needed). Our reunion was as fun as ever.

We could have never guessed that Autumn’s time at Easterseals would prepare her for what has been a life-altering period. She said about the students here “They always give us perspective” and in her silly voice said “Ain’t nothing that bad!” Attitude is everything! I’m grateful for Easterseals and the students and proud of and motivated by my daughter!

I guess she gets some perks, in the picture below she is in the wheelchair-accessible section at the Elmwood Park Zoo and she’s close enough to “Kiss the Giraffe!”

Lasting impressions

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By Jeanine Johnson

Easterseals has a way of building lasting impressions and lifelong friendships both among employees and employees and the families we serve. If any of you have read my blogs in the past like here, here, here, here, and here, I periodically give updates on one of my favorite graduates of Easterseals. Since it has been a while, I thought I’d fill you in on what Mung has been up to.

Covid has put a damper on my semi-annual outings with Mung, but we have managed to stay connected. Thank God for modern technology. It was vital in helping to not feel isolated. His mom texts, sends pictures and short videos of him. I send him gifts now and again to let him know I haven’t forgotten him. It’s hard to believe that he is 10 years old already. While I really enjoyed getting the texts, I was missing the live interaction with Mung so we set up a video call with him, me and my daughter Autumn (school nurse and big fan of his). It was so great to hear his voice and see his face in real time. I am so happy to report that he is still the vibrant, outgoing character he has always been.

He immediately asked how Easterseals has been since he left. He truly misses this place. When asked how he was doing in school, he fell a little silent. So I asked if he is still talking too much in class. (He is quite the talker) He leaned his head to the side, looked at us and exclaimed “I’m really popular at my school”. Autumn and I burst into laughter (as seen in the screenshot his mother took). Autumn responded, “we know Mr. Mayor”. We talked about school, what’s going on in our lives and the prospect of getting together. I won’t lie, I always worry about our children after they leave the nurturing environment of Easterseals. It is quite a special place. It brings me much joy to see he is doing well.

With restrictions lifting and vaccines completed, I am hopeful we will be meeting for an outing sometime when the weather warms. It’s one of the things I look forward to this summer. I am so grateful that his family continues to share him with me. Stayed tuned for more updates!

As One Door Closes, It Gets Decorated

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by Jeanine Johnson

The work experience is so much more rewarding when you choose to become engaged and part of the work community. One way I have done this besides getting to know the kids and forming awesome bonds, is by beautifying the office. When I first started working at Easterseals, I asked if it was ok to decorate. It was around the winter holidays, and I wrapped my door like a big gift. It seemed to bring joy to those around me and things took off from there.

I started decorated my door periodically. Usually, season related or to mark the start of the school year. Trying to spread positivity. These acts afforded me the opportunity to get to know my co-workers. Where one might not have necessarily had a reason to stop by and chat, the door and bulletin boards now opened up conversations. I didn’t expect it to take off as much as it did. People anticipate the door change and often ask me what I am doing next. That adds a little pressure, but it’s all good. I keep it a secret every time. Mostly because I am never sure. I have to scour Pinterest for ideas. I have expanded to decorating some of my coworkers’ doors. One casually mentioned that his door had never been decorated so of course I had to remedy that.

At minimum, my door and the bulletin board outside my office will be decorated. Though, to be honest, no undecorated bulletin board or door is safe from my handy work. If the feeling hits, it’s getting decorated!

The Cardboard Fairy Strikes Again

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by Sue Lowenstein, MSPT, Physical Therapist

Well, “The Cardboard Fairy” has done it again! She helped give another child at Easterseals a set of wings by putting her engineering skills and ingenuity to use! This time, the Cardboard Fairy tackled the issue of a walker that needed some additional support.

Let me back up a little for those of you that have not read our previous blogs (here, here and here) about the “Cardboard Fairy.” Her real name is Dorothy Hess. Dorothy is a retired market researcher who volunteers for Easterseals in a very unique way. She uses heavy duty cardboard (sometimes referred to as “tri-wall”), along with various straps, glue, PVC pipe, clips, and whatever other materials might be necessary to create custom-made adaptive equipment.

Now, let me introduce you to my student, Kayla. She is a sweet and social 4 year old girl who wears purple glasses and has a head full of curls and a smile that can light up a room. Kayla has been attending our approved private pre-school program in Levittown since September of 2020. When Kayla first started preschool, she needed a full wrap-around chest support, along with the sturdiness and width of a gait trainer, to walk. However, as time passed, she approached the point where she was outgrowing this gait trainer. While a larger sized gait trainer could have been ordered for Kayla, it would have been significantly larger and cumbersome. These gait trainers do not fold, which would make it very difficult for her parents to transport it from place to place.

As her physical therapist, I was eager to help Kayla transition to a more traditional style and smaller walker (and one that is foldable!). However, Kayla was still reliant on the full back support that the gait trainer provided her. Many attempts to have Kayla walk in a traditional reverse walker without a back support were unsuccessful. Even though Kayla was strong and balanced enough to walk with this type of walker, she craved the back support that the Rifton gait trainer afforded her. But there were no reverse walkers available on the market that came with larger back supports like the one that Kayla needed.

So I tried my best to create a custom back support. I used pool noodles (PT’s and OT’s love these things), along with some extra cardboard, tape, and cable ties to try to create a custom back support that would be mounted a traditional reverse walker. However, it did not take long for the cardboard to bend and the tape to fall, resulting in an epic fail.

I decided that this was a job for the Cardboard Fairy! With permission from Kayla’s family, and adhering to Easterseals’ COVID protocols, we were able to bring Dorothy in to sneak a peek at Kayla and my sad attempt at building a back support. Dorothy took some measurements, and left our school with the walker in her hand. Just a few short days later, what to my wondering eyes appears on my phone but a video of a lightweight but sturdy back support designed to fit perfectly onto the reverse walker. It is made out of the tri-wall I mentioned above. It snaps easily into place onto the walker, and there are two additional straps to help it remain stable and in place for Kayla when walking. It can also easily be removed to allow the walker to be folded and transported by her caregivers. And to top it all off, Dorothy painted it purple to match the color of the walker and Kayla’s glasses!!!

Kayla’s parents and Dorothy and I are thrilled to report that Kayla took to this back support and the walker very quickly, and she is now WALKING INDEPENDENTLY all around her home and in the hallways of her preschool. The Cardboard Fairy did it again…she gave another child a set of wings (this time in the form of a purple back support) so she could take off!!! Well done, Dorothy. Kayla…you keep on walking, girl!!!!

The Hall of Thanks

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by Adrienne Aiken

I became a part of the Easterseals family in 1999. In 2000, I wanted to find a way to celebrate the Bucks County Division staff and let them know that they are appreciated. I reached out to our families that we service in the community and in our Approved Private School, to see if they would be willing to write a letter to say “thank you” as part of Staff Appreciation Week. We provided a colorful piece of stationary to families and they responded by sharing their love an appreciation on paper. The letters were hung in the hallway for staff to read and the response was better than I could have imagined. There were smiles, tears of joy and laughter in the hallway as staff read through the letters. Some parents shared with me that this project was the first time they wrote anything about their child’s special needs and that it was cathartic for them. Since then, I have continued the tradition and kept every letter given to us.

The pandemic has been quite a challenge for all of us and I struggled with how I could provide some sunshine to staff this summer. I decided to pull out the binder with all of the testimonials from our Easterseals’ families that were collected since 2000, and hang as many up in the hallway as I could. The hallway is currently labeled as “The Hall of Thanks,” for the rest of the summer.

Hopefully seeing the old pictures of the little faces, artwork and hand prints that families added to the letters, will bring smiles to all everyone that reads them.

DIY Sensory Mat

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by Rachel Meade

After discussing the sensory mat idea with our PT, I figured I could definitely make one.

Making one was very easy and could definitely have been less expensive then what I spent on making it. All the items could have been purchased from the $1 store except the mat.

With my sons sensory issues he likes and dislikes so many things, so this multi-experience mat is perfect. He thoroughly enjoys running his hands over each section and rubbing his feet on certain ones as well.

The pipe cleaners, which are soft but still a little prickly, are his favorite. He is very intrigued by the sandpaper. The rainbow robe is confusing to him because it is hard when you step on it but nice to rub. He loves the Brillo pads for his hands or feet and he likes to pick off the felt furniture dots.

This whole mat only took me about an hour to make once I collected all the items!!

Meet Dr. Amy Houtrow

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This year we are focused on how small actions can have big impact and we believe our Town Hall Series can have big impact in our effort to inform, engage and inspire. We are excited to have Dr. Houtrow be our featured speaker for our third Town Hall on Thursday, July 29th at noon.

Amy Houtrow, MD, PhD, MPH is a professor and the Endowed Chair for Pediatric Rehabilitation Medicine in the Department of Physical Medicine and Rehabilitation at the University of Pittsburgh School of Medicine. She is also Chief of Pediatric Rehabilitation Medicine Services at UPMC Children’s Hospital of Pittsburgh and the Vice Chair for Quality and Outcomes.

Dr. Houtrow graduated cum laude in Health Sciences from Kalamazoo College, earned her Doctor of Medicine degree at Michigan State University (MSU) in 2000, and completed a combined residency program in Pediatrics and Physical Medicine and Rehabilitation at Cincinnati Children’s Hospital Medical Center. She completed her Master’s degree in Public Health Policy and Management at the University of Michigan in 2004 and in 2012 earned her Ph.D. in Medical Sociology at the University of California San Francisco (UCSF) while also serving as faculty there. Her dissertation won an international award for research on childhood disability.

Dr. Houtrow’s clinical focus is caring for children with disabling conditions and improving each patient’s function and quality of life to the greatest degree possible. Her patients include children with spina bifida, cerebral palsy, rheumatologic disorders, brain and spinal cord injuries, and orthopedic, musculoskeletal, and neurological disorders and conditions. Complementing this work, Dr. Houtrow’s research examines health care access, outcomes, and equity for children with disabilities, and explores opportunities to improve service delivery. She has authored over 120 manuscripts for high-impact medical journals, written and edited textbooks, developed training programs for young physicians, and she is a sought-after speaker for conferences nationally and internationally. Her work has repeatedly garnered national media attention and informed public health policy. Dr. Houtrow serves on a number of important health policy committees and recently provided expert testimony to the United States Senate. In 2018 she was inducted into the National Academy of Medicine, one of the highest honors in medicine.

Dr. Houtrow will focus on how everyone has a role in addressing health disparities for children with disabilities. She believes we can create a future where all children with disabilities thrive. We invite you to join us for this informative, no cost event by registering here.

Could a Colorado Private Duty Nurse solution work in PA?

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by Rebecca Dean, Easterseals Social Worker

In addition to the emotional and social impacts of having a child who’s considered medically fragile, parents are often tasked with finding a Private Duty Nurse or Certified Nursing Assistant (CNA) to provide care during the day. Families across the nation struggle to receive in-home nursing care that fits their needs and expectations. Parents who hire nurses during the day while they attend work, also often find themselves coming home from work to provide continuous care to their child.

What if a program existed where parents could be hired as their child’s care provider? What if parents could bring their level of passion and attention to caring for their child’s medical needs full time as a CNA? Well, what if we told you that a program like this already exists! The only catch… it only exists today in one state.

In Colorado, they’ve developed a solution for these concerns, known as the Family CNA Program. This is a program where family members can receive free training to become a CNA for their child. The family member is then hired by a home health agency, and can be paid to take on the tasks that would normally be performed by a nurse that has been hired! When it is determined that a child needs individual nursing care, parents are given the choice to either hire a nurse or become a CNA themselves. The importance of choice in these situations is crucial and provides the families with increased self-determination.

There are many benefits to this program including: ensuring that the child is receiving the highest level of care continuously, parents not having to juggle a job while managing their child’s care, decreased exposure to viral diseases, and evidence showing a decrease in pediatric hospitalizations rates which leads to an overall reduction of healthcare costs. Qualifying parents in Colorado who are a part of this program, can receive full medical coverage for the entire family, as well as other benefits.

While this isn’t a program available to parents in Pennsylvania at the moment, the need for it still exists. The Unforgotten Families is an advocacy group that promotes the awareness and engagement around the challenges faced by medically fragile children and their families. Their mission is to advocate for a statewide Family CNA Program in Pennsylvania that will give parents the choice in either hiring a nurse, or being trained to become a CNA for their loved one.

If you’re interested in having this program started in PA, you can show your support by becoming an advocate! Share your voice of support by visiting: https://p2a.co/Kk5ylZb. You can select to receive emails and texts regarding the campaign, but it is optional. Becoming an advocate is similar to signing a petition; you are not held to any obligations. Instead, it curates a list based on zip codes, so that The Unforgotten Families is able to make a case to local legislators. For example, if 1,000 people from Philadelphia sign up to become an advocate, it demonstrates to local Philadelphia and Pennsylvania legislators that there is an interest and need for this program in these areas.

To learn more about the program, or becoming an advocate for The Unforgotten Families, please visit their website at http://www.theunforgottenfamilies.com

The Inclusion Conversation

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By Christine E. Staple Ebanks
Advocate, Author, founder of the Nathan Ebanks Foundation

Inclusion is…

“the mindful practice of including and accommodating people who have traditionally been excluded because of their disability, age, race, gender, sexual orientation, religion, etc.”

Why is “inclusion” so important, especially now?

We have more in common than we think. A friend of mine always reminds me that as human beings, “we are one, sharing one human experience.” She explains that while we are diverse in age, national origin, socioeconomic status, education, and physical appearance, we share one human experience. 

We breathe to live. We hurt, cry, and experience happiness, sadness, and the myriad of emotions we share as human beings inhabiting the planet. I am sure we can each recall a time(s) when we felt excluded, left out, not understood, or like we didn’t belong. This inherent need to belong, connect and have our voices heard is what makes the act of inclusion so important, especially at this time. 

Our world is becoming increasingly diverse. Research informs us that this current “post-Millennial” generation who are becoming adults is the most racially and ethnically diverse generation in history (Mondal, 2020). To live peacefully and in safety, for us to work together, play together and build our communities and nations, we need to make room for everyone. Inclusion and belonging are what make diversity work. (Eileen Hoenigman Meyer, 2019).

The opposite of inclusion is exclusion and omission. When we fail to be inclusive, we practice to exclude, ostracize, discriminate and are intolerant to differences. Hate and violence are byproducts of this way of being. This negatively impacts all of our society, home, school, work, and social spaces. Just take a look at what’s happening today. The world has become a very intolerable place to live, do business and raise families.

Inclusion is a mindset. It requires us to take action on a personal, corporate, and national level. When we are inclusive, we are participating in creating environments in which any individual or group can feel welcomed, respected, supported, and valued to participate fully. An inclusive climate embraces differences and offers respect in words and actions for all people. (Independentsector.org)

When we include, “We become not a melting pot, but a beautiful mosaic. Different People. Different beliefs. Different yearnings. Different hopes. Different dreams“. – Jimmy Carte

The everyday moments of living provide opportunities for us to practice inclusion.

Here is one thing you can do to get started. Over the course of the next few weeks, be mindful of inclusion. In the next week, observe and pay attention to how and when you may be excluding others. Make a physical note of how it occurs. Is it based on their religion, their race, their appearance, their gender, their sexual orientation, their class background? How are you practicing exclusion without even realizing that you are?

Then join our conversation at the upcoming Town Hall Meeting on April 29, 2021, where we will have a deeper discussion on what small steps you can take to impact inclusivity. 

Source:

Mead, J., & Paige, M. (2019). Building a Wall around the Schoolhouse? Education and Immigration in the Trump Age. Journal of Law and Education, 48(4), 449.

About Inclusion — NJCIE. https://www.njcie.org/inclusion/

Diversity, Equity & Inclusion: The Impact on Human …. https://adurolife.com/blog/human-performance-coaching/diversity-equity-inclusion-the-impact-on-human-flourishing/

Why Diversity, Equity, and Inclusion Matter — Independent …. https://independentsector.org/resource/why-diversity-equity-and-inclusion-matter/

Everyone has the right to be safe and to #LiveFearFree.. https://www.facebook.com/ButetownLabour/videos/758787731509309/

HL7 International Organizational Statement on Diversity …. http://www.hl7.org/documentcenter/public/legal/HL7-Statement-on-Diversity-Equity-and-Inclusion.pdf

Mondal, Somen. 2020. Why is Diversity, Equity, and Inclusion Important to Organizational Success? Ideal.com. Retrieved 03/28/2021

About Inclusion. njcie.org/inclusion. Retrieved 03/28/2021

Brown v. Board of Education of Topeka. khanacademy.org Retrieved 03/28/2021

Wilkins, Dan. The Need for Inclusive Communities. https://www.abilitycenter.org/essays/need-inclusive-communities/ 

The Fight to Stay Positive

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by Jeanine Johnson

I remember being so disappointed when we closed for the second time due to Covid. The holiday season was approaching and I was looking forward to some sense of normalcy with work and daily interactions with colleagues. I was hoping to at least make it through Christmas. While there was still a sense of hesitancy, there was also some relief. It was great to see some of the familiar faces. (Well parts of the faces). We seemed to be falling into a good routine and people’s spirits seemed to be on the rise. It was nice to hear how others were adjusting their plans for the new “normal” and making the best out of the situation.

So back home we went, working remotely and trying to find ways to stay connected, motivated and positive. While I like my solitude, I am not a solitary person. As I planned for the holidays, it was important for me to make sure I got things done early. Almost all of the gifts would be mailed and I wanted to make sure there was plenty of time for them to get to their destinations as the post office was experiencing major delays due to Covid. Most of my gifts were delivered before Christmas, one a month later. I thought it was lost for good and was relieved that it did ultimately arrive. My goal in gift giving was to hopefully bring a little joy into the lives of others. I felt we were all in need of a “pick-me-up”. Looking back on it now, I realize that my need to do it was just as much for me as it was for those receiving. I had a need to bring joy, feel joy, have joy. It felt like so much of that was taken away and I wanted some back.

Of course, I sent a little gift to my favorite Easterseals graduate Mung. I feel like he and his family have become an extended part of mine. He refers to me as Wonder Woman and he is the Joker. I sent him a Joker faced mask. I really appreciate that his mother keeps me updated with pictures periodically. I got to see him in his mask, playing in the snow and opening up the Valentine’s gift from me. They sent me a Christmas gift that I will treasure forever. It was a throw blanket with photos of Mung, my daughter Autumn and me from various day trips. They were some of my favorite photos. I nearly cried. It was such a thoughtful gift. It was like an injection of happiness was administered to me. Their kindness made my holiday and I smile every time I use it. We often know how we feel about others but don’t always know how much we mean to them. A reminder that we are never alone even when we feel that way. I thanked his mother again for sharing her son with me. These are the meaningful things that we should hold on to as they are the things that will guide us through the hard times.

I will remain hopefully optimistic that we are turning a corner with this Covid 19 pandemic as vaccines become more available, numbers decrease and some restrictions lifted. Maybe, not so far in the distant future, we’ll be closer to functioning at some form of the “Old Normal”.

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