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!”
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!
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.
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!!
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.
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
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.
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”.
We recently asked Easterseals staff, volunteers and family about their experience with the pandemic and their thoughts on how it has affected women in particular.
Name: Jeanine Johnson Title: Administrative Assistant, Easterseals of SEPA Philadelphia Division Children: Autumn Williams (Easterseals Nurse) Pets: Dog – Aurora, Cats – Me-Mo and Fieval, Turtle – Ursula
In what ways do you think the pandemic has been harder on women?
While family dynamics have evolved, the truth of the matter is that women still carry the bulk of the parenting responsibilities. The pandemic in a lot of ways has amplified this. The juggling of family and work has always been a fine balance, add to that, a scenario where there is no separation from the two and increased responsibilities of monitoring homeschooling.
What is your favorite Pandemic TV Binge?
I caught up on “This Is Us” and made my husband binge watch the complete 12 seasons of “Bones” with me.
What is the best part of working from home? What is the worst part of working from home?
The best part of working from home is the time you save not commuting. My daily commute is 1 ½ hours each way every day. The absolute worst part is not having the face to face interaction with the children and my co-workers!
What have you learned about yourself because of the pandemic?
I have learned that although I like my solitude, I am not a solitary person. More than ever, I treasure my connections. We always stress steady routines for our children. I’ve learned that the same is kind of important for adults too!
Name: Linda McDevitt
Career/Job Title: Owner Tax Advisors, LLC. I am a tax and financial planner, Easterseals Board Member Children: 2 sons, ages 19 and 16 Pets: none
In what ways do you think the pandemic has been harder on women?
This pandemic has created even more pressure on women with families as not only does everything that used to get accomplished get completed, but there are added burdens of protecting the family and providing for the family during the pandemic. My husband is a bit older than me and that meant that for the first 3 months of the pandemic, he did not go out of the house as we didn’t think it was safe. In addition to doing anything that required being outside, I had to be sure the boys were doing their school work and logged into the school properly and that their assignments were submitted and accepted while trying to keep life as normal as possible for the family. In our particular situation my firm, Tax Advisors, is the main source of income for our family. While the workload was consistent so we did not have a financial concern, some of our employees could not continue to work as they had to be home to watch over their own children. Tax season 2019 never seemed to end and just ran directly into tax season 2020. It will continue to be a challenge to get all the tasks completed in a safe, efficient manner. It is automatically expected that the woman would take on the schooling issues of the family.
What advice would you give to your pre-pandemic self?
Life was busy and hectic but we managed to make it work well pre-pandemic. Being the leader and organizer of our family is something that I was good at and probably didn’t give myself enough credit for keeping it all together.
What is a silver lining of the pandemic/staying at home?
My workload only increased with the pandemic so while actors and others had the benefit of being home with their families and catching up on movies and family time, I had to take on the work of 4 people to be sure my business remained efficient and productive. There has been no down time for me so it is difficult to find a silver lining. The glimmer of hope that I hold onto is that at some point in time we can meet with people again, see our families and friends and travel again. Vacations will be even more appreciated going forward for sure. We have an official office and a home office so I am so tired of the home office and look forward to using the official office again soon. We were fortunate that other than the mail being an issue, we were well set up for work at home.
What is one new thing you did during 2020/stay at home?
I enjoyed going to get gas in the car just to get out of the house! In 20 years of marriage, I never got gas in my own car no less enjoyed the experience of just being in my car!
What is your favorite Pandemic TV Binge?
The Bradshaw Bunch
What strength did you discover about yourself that you didn’t know you had?
I’m good at putting fear aside and doing what needs to be done for the sake of the family. Also there is always more in the tank than one thinks there is. When you think you have given your all, there is always more to give.
What does your work from home situation look like?
We are fortunate that years ago we converted our 2 car garage to an office so I have a formal office to work from each day. The hardest part was not kicking the kids off their school work or zoom meetings when I had zoom and teams meetings. The problem with a home office is that work and home can blend. I am cleaning out non-work items that found their way into the office.
What is the best part of working from home? What is the worst part of working from home?
The best part of working from home that there is more time in the day and family and work can blend together. The worst part of working form home is nothing is ever complete. It is groundhogs day every day. Not enough work gets done, not enough chores get done, not any me time. The drive home after a client meeting is often relaxing and down time. There is no such thing as down time with this pandemic. I do enjoy being able to have time with my son that is a sophomore in high school during the day. It is nice that he can still do activities like baseball and swimming so at least our lives a little normal. We are able to adjust our schedule as needed so working from home certainly provides that benefit. Our son that is a freshman in college can call at his convenience and we can make it work rather than worrying about work time/home time. The problem with working form home is that it does not turn off. I got a text from a client this morning, Saturday morning at 6:45. It was not a great way to start my weekend. Unfortunately the pandemic has blurred the lines between work and homelife and some clients act as if I should be available 24/7. I have to be careful not to get caught up in their schedule. We provide great tax and financial planning but it is not life threating so there is no emergency that has to be resolved the moment they think of the issue. It will be nice post pandemic when people have more regulated schedules and there is a separate of home and work time.
Children: 3 – Including Easterseals Amabassador Timmy
Pets: none
In what ways do you think the pandemic has been harder on women?
Typically, as women we’re expected to be keep moving because someone is always relying on us in both our professional and personal lives. The pandemic has caused a strain on our work/life balance. As a working mom, I’m now at home balancing a full-time job while taking care of my two young children which includes being their mother, their teacher and their therapist. Plus, you know trying to find time for myself somewhere in between.
What advice would you give to your pre-pandemic self?
Enjoy life and don’t take things for granted.
What is a silver lining of the pandemic/staying at home?
Spending time with my family and being a part of my children’s educational development.
What is one new thing you did during 2020/stay at home?
I’ve dedicated myself to working on my professional development by taking classes towards my Bachelors’ degree.
What is your favorite Pandemic TV Binge?
I’m not a big TV watcher but I will admit that I did indulge in Tiger King!
What strength did you discover about yourself that you didn’t know you had?
Multitasking. Who knew I could balance it all without missing a beat?
What does your work from home situation look like?
I have two workstations. I switch between the dining room table and the kitchen counter near the Keurig (I need my caffeine throughout the day). Wherever I am, my kiddos are right there next to me. Best coworkers I’ve ever had!
What is the best part of working from home? What is the worst part of working from home?
The best part is being present to watch my children learn new things. The worst part of working from home is that the kids don’t understand that Mommy can’t play all day.
Name: Dr. Kimberley Brown-Flint
Career/Job Title: Director of Programs for Easterseals of Southeastern PA
Children: A daughter and a son
Pets: 3- Giant Alaskan Malamute, German Shepherd/Husky mix and a fat grey cat.
In what ways do you think the pandemic has been harder on women?
Well, unfortunately we still have many people who feel a woman’s place is in the home. I see mother’s home schooling, working from home and caring for elderly parents or infants. This makes thing really hard for women.
What advice would you give to your pre-pandemic self?
Get in better shape. The covid 15 is real and I was lucky to kick it to the curb.
What is a silver lining of the pandemic/staying at home?
I got to spend a lot more time with my family.
What is one new thing you did during 2020/stay at home?
I went to a mostly plant based diet and I can’t believe how much better my lab work is and how much better I feel
What is your favorite Pandemic TV Binge?
The last Kingdom and anything Viking.
What strength did you discover about yourself that you didn’t know you had?
The strength to stick to a plant-based diet and the ability to directly impact my health with the foods I put in my body.
What does your work from home situation look like?
I work wherever I can find quiet.
What is the best part of working from home?
The best part of working from home is being able to wear my pajamas all morning and all the together time we have had as a family.
What is the worst part of working from home?
We keep our house cold and find that I am cold all the time.
This past year, our country faced race and equity issues that require conversation and change at every level. In an effort to truly understand these issues and affect change, Easterseals has begun Race, Equity and Anti-Bias training, which will be provided to every staff member. The process will include conversations about race, equity and bias within Easterseals and the communities we serve. These conversations will help guide future trainings to address concerns and issues within our organization.
The training will occur in small groups to help ensure that staff feels comfortable to discuss their experiences and their concerns about these issues. The trainings are being facilitated by Andrea Lawful Sanders. You can learn more about her at https://alawfultruth.com/about/
Ivy Lewis, Easterseals CFO, shared her experience through a Q & A session after her recent training.
Why do you think this type of training is important for Easterseals?
I think this type of training is important for each and every human being. It is important that Easterseals begin and continue to conduct this type of training to open the lines of communication on the often avoided conversation of Race and Equity. Easterseals serves a diverse population and while there is some diversity among its staff, it is far from proportional with our clients. It is equally important for Easterseals to help its employees break down the barriers that exist due to implicit bias and dispel untruths that far too long been taken as fact. By providing Race, Equity and Anti-Bias training to employees, Easterseals will ultimately provide a greater service to many of our clients if staff truly understanding the disabilities they face often outweigh their medical diagnosis.
How do you think working at Easterseals has impacted your view of equity and inclusion?
My view has widened during my time at Easterseals in terms of equity and inclusion for differently-abled (instead of disabled) people. However, working at Easterseals has done nothing to change my view on Race and Equity. Easterseals is a microcosm of the nation as a whole. I am a black woman living in America for all of my life, more than half a century now. Whether within in the confines of an Easterseals building or not, what I experience as a black woman does not change. My blackness doesn’t go away if I don’t mention it or people claim they don’t to see color. However, I appreciate Easterseals for taking the first step in recognizing the enormity of this problem and providing staff with this training. Perhaps with this training staff will be inspired to learn the truth about the inequities that exist for people of color which began more than 400 years ago and surprisingly still exists today. If staff share this knowledge with those outside of Easterseals to affect change, working at Easterseals will have an impact on my view of equity and inclusion from Race, Equity and Anti-Bias perspective.
What was the most valuable thing about this training from your perspective?
The most valuable thing is that Easterseals thought it important enough to provide this training to every employee. Equally important is engaging the incomparable Ms. Andrea Lawful-Sanders to facilitate the discussion and provide tools to break down the barriers that separate different points of view as well as building blocks for a better understanding to bridge the divide.
What are your thoughts on how we can be more inclusive in our everyday lives?
I think it’s simple, to be more inclusive in our everyday lives we just need to take these words to heart… “I’m starting with the (wo)man in the mirror, I’m asking him (her) to change his (her) ways. And no message could’ve been any clearer, if you wanna make the world a better place, take a look at yourself and then make a CHANGE.” Man in the Mirror – Michael Jackson
Easterseals of Southeastern Pennsylvania 