Category Archives: child stories

The Importance of Staying Connected in a World of Social Distancing

by Jeanine Johnson

I don’t think anyone would disagree that the past five months have been a whirlwind.  Our lives were turned upside down and sideways.  Was I anticipating that the Covid pandemic was going to last this long?  No I wasn’t.  As the days went by I found myself drifting away from family and friends.  Regular interaction with co-workers was mostly halted due to the appropriate decisions to have the staff work from home.  Those of you who know me, know that I am a pretty upbeat and positive soul.  I felt like I was starting to lose some of my shine.  Not having any of the normalcy I was used to, that I’ve taken for granted, was starting to wear on me.  Can’t do something as simple as have breakfast at the Diner before I go food shopping.  Oh, and let’s not talk about the whole process of food shopping.  I miss the kids.  I so miss the kids.  They are the best part of my work day. 

I realized I needed to connect.  I needed to bring some of the sunshine and joy back into my life.  I needed some Mung therapy.  Just in case you have never read any of my blogs, Mung is a student that graduated from Easterseals a couple of years ago.  I bonded with him and his family while he was a student here and we have kept in touch.  Usually meeting up a couple times a year for an outing.  So grateful to his family for sharing him with me.  For his summer break I had planned to meet up with him, take the ferry from Penn’s Landing, go to the Camden Aquarium and feed him to the sharks.  Ok, I wasn’t going to feed him to the sharks.  Unfortunately, circumstances squashed my plans.  I thought about it.  If I’m feeling disconnected, how must it feel for the kids.  It was time for me to get selfish.  Time to bring a little unexpected sunshine into his life.  Selfish because this would probably bring me more joy than he would get out of it.  I have a little inexpensive pick-me-up I use on occasion.  It is a Cookie Card.  Its $6.00, shipping included.  You get to send one cookie in a decorated box with your message on the label.  I got so excited at the prospect of bringing joy that it helped bring that spark back.  I couldn’t wait for it to be delivered.

I didn’t have to wait long before I got a text with a picture and two videos of him thanking me aka “Wonder Woman” and Autumn (my daughter) aka “Bat Man”.  He said that he loves and misses us.  It was so nice to hear.  I realize that you can start to lose yourself if you become too disconnected from the world and each other.  We have to get used to a “new normal” and have to rebalance how that makes us feel, find the positives and take joy in the little things.  It’s been real trying, but we’ll be stronger because of it.

Measuring Accomplishments

by Susan Lowenstein, MSPT

Booker T. Washington, American author, orator, educator, and advisor to many presidents once said, “You measure the size of the accomplishment by the obstacles you have to overcome to reach your goals.” 

So, that being said…let me tell you about a little boy I know named Miles. He is a 6 year old that is currently a student of mine at Easterseals of Southeastern PA, Bucks County Division. I have had the pleasure of watching him fight to overcome obstacles for the past 9 months, but he has been fighting an uphill battle for all 72 months of his young life.

Miles attending virtual therapy!

OBSTACLE #1: Born 8 weeks early.

OBSTACLE #2: Shared birthday with his twin brother so he was already small for his gestational size.

OBSTACLE #3: Has a mutation on his COL2A1 gene that causes several types of skeletal dysplasia, and his is closest to what is called hypochondrogenesis.

OBSTACLES #4,5,6,7 and 8: Has spinal instability, ongoing joint issues, hearing loss, significant vision issues, and a floppy airway.  

OBSTACLE#9: Intubated at birth

OBSTACLE#10: Received a tracheostomy at 3 months of age

OBSTACLE#11: Transferred to the ICU at Nemours DuPont (an hour away from home!)

So… why am I sharing all of this with you? Well, this is just the beginning of Miles’s story. He may have encountered countless obstacles… but he continues face each one head on and works to overcome them.

So…let’s look at all that Miles has ACCOMPLISHED so far in his 6 years of life.  

ACCOMPLISHMENT #1: Became strong enough to be supported by a home ventilator and home nursing support to go home, just 6 days shy of his and twin brother George’s 1st birthday! 

ACCOMPLISHMENT #2: Learned to taste foods by mouth (even though he needed a g-tube for nutrition) during the first year of his life

ACCOMPLISHMENT #3: Used his hands to gesture and request for food like yogurt and applesauce during his first year of life

ACCOMPLISHMENT #4: Re-learned how to accept some food orally again after cleft palate split at 18 months of age.  

ACCOMPLISHMENT #5:  Started sprinting (practicing time off the ventilator) when he was around 3 years old. Now he is at the point where he can spend nearly all of his waking hours without the ventilator.

ACCOMPLISHMENT #6: Sat upright in a highly supportive activity chair at 2.5 years old (despite his large head and short arms and trunk)

ACCOMPLISHMENT #7: Sat upright on the floor without any back support while playing with toys and watching the classroom smart board or TV at home at 5 years old

ACCOMPLISHMENT #8: Transitions from lying down into sitting up all by himself at almost 6 years old

And…just in the time that it has taken me to put this blog together…Miles has accomplished yet another 2 more feats!!! He can now pull himself up into a supported standing position at his walker all by himself (that’s #9), and has gotten strong enough to crawl over to a large couch cushion and pull all of his body weight up onto it (that’s #10).

Every accomplishment that Miles has achieved is testimony to his resilience, his amazing family and his team of health care and educational professionals. Together, we continue to imagine what he CAN do, not what he CANNOT do.

When people ask me what I do for a living, I tell them that I am a pediatric PT that works with children with complex physical and medical needs. Frequently, I am asked, “ Doesn’t your work make you sad?”  But to the contrary, I find it wondrous to work with children like Miles who are able to overcome obstacles and accomplish so much more than some people may have ever thought would be possible.

Miles, thank you for being such a fighter. We at Easterseals are behind you 100%, and we will continue to watch you hurdle through more obstacles and accomplish so much more accomplish in your future!

Miles proudly displays a certificate of accomplishment

The Love Affair Continues

by Jeanine Johnson

Those of you who have ever read my blogs know how much I love Easterseals, the mission, the staff and the children. You probably also know that I have spoken in the past about what I hope to be a lifelong bond with one student who graduated in 2017. Periodically, I have the pleasure of being able to meet up with Mung as his mother is gracious enough to share her son with me. Mung stole my heart from day one and I am so glad I get to check up on his progress and achievements. You always hope that the personality and happy spirit still remain after the children leave the nurturing environment of Easterseals. It’s a special place and we all know the outside world can be cruel.
Before Winter Break, my daughter and I planned an excursion to take him to see Trolls the Musical. Won’t lie, I wasn’t really interested in the show, but the opportunity to catch up with the little man outweighed the thought of sitting through the program. I have to tell you, experiencing his reactions to the show and his interactions with my daughter Autumn (who used to work at Easterseals and they were as thick as thieves) brought so much delight to me. I don’t know who enjoyed the experience more. Afterwards, the three of us headed out to have lunch where we could catch up properly.
While Mung was a student, he forged several strong relationships with various personnel at Easterseals. One of those people is Eric who was his bus driver at the time and is now our Transportation Coordinator. Eric had the opportunity to get to know Mung and his family over the period he spent transporting Mung and other students to and from school every day. Well, I had one more treat for Mung that day. While we were having lunch and catching up, Eric made a surprise appearance to see Mung. His reaction was priceless. He was at a loss for words, which I have only witnessed one other time with Mung over the years. Once he gathered his composure, he first said “it can’t be” then he went into silly mode and said “I don’t know that man”, all while smiling ear to ear.
By keeping the connection with Mung, I get to see firsthand that Easterseals was a strong foundation to prepare him for what lies ahead. People often say to me that it’s nice that I keep in touch with Mung. His mother thanks me and tells me it means a lot to her and him. Honestly, it’s partially selfish. I get as much enjoyment out of it as he does. I already have ideas for our Spring/Summer outing. Stay tuned!

A note of thanks!

by Danielle Franchini-Muir

Danielle is not only our Director of Behavioral Support Services, but she is also a Friendship Academy parent. As her son began kindergarten this morning, she wrote this lovely note to the staff at the Friendship Academy and the entire Montgomery County Division.

Hi Montco Staff!
I wanted to send a note of thanks on this special day. My son Joey has been attending Friendship Academy at Easterseals Montgomery County for two wonderful years and had his last day just a couple weeks ago. He gets very nervous with new people, places, and things, but school soon became his favorite place to be! Not only were his teachers phenomenal, but all the staff there including other education staff, child care staff, therapists, and even Mr. Steve (on all our late days!) all also made him feel as special and loved as he is to me. There is no better feeling as a parent. He was so sad to leave and even shed a few tears leaving the parking lot on his final day.
As sad as it was/is for both of us, I knew putting him on the bus this morning for Kindergarten he was READY! He was nervous, but smiling.  And I know he has the skills to really make it in Kindergarten thanks to all of YOU 🙂
Hope this note and pictures brighten your day! Just know all your hard work really does pay off – you all make differences in the lives of kids and parents every day.


Danielle

100 Years, a reflection with a former client

by Liz Graham

It’s 2019 and Easterseals is celebrating 100 years of service and advocacy for people living with disabilities!

It is an incredible milestone and I have been lucky to learn more about our history and meet some of our supporters and clients over the past few months. Through this celebration I have had the pleasure of getting to know Susan K., an Easterseals Legacy Society Member and former client who received Physical Therapy services in the 1960’s. In speaking with Susan to learn about her life and her experiences it struck me how far we have come as a society and, yet, how far we still have to go. This is why the next 100 years of Easterseals are so important.

Susan was diagnosed with Cerebral Palsy early in life. Her physical challenges have never defined her; fortunately, with the advocacy of loved ones early in life she never believed she couldn’t achieve whatever she set her mind to. In Susan’s words:

“My story as an “Easterseals child” began sixty some years ago in, what was then, the small, sleepy – some might say idyllic – town of Doylestown, Pennsylvania, where I was born and raised.

Doylestown, in the 1950’s and 60’s, was a town small enough that most families knew each other somehow or other…from school, church, civic activities or shopping at the A&P grocery store in the middle of town. I attended the public “borough schools” from kindergarten through graduation from high school. However, there was a time that my going to public school was in doubt. There were a few who felt a physically handicapped child should not be integrated in school with other more “normal” children. But, thanks to the perseverance of my parents and a few enlightened individuals, it was felt there was no reason I could not be mainstreamed into the school system. And, only minor physical accommodations were ever made. Accommodations that would be almost laughable today, they were so simple. My first four years of school were spent in a very old, gothic structure with four floors and restrooms in the basement. As an example, in first and second grades, when we had one of our numerous fire drills, a male teacher, on his way down the stairs from the upper floors to the outside, would sweep me up in his arms and carry me down the long outside flight of stairs to the playground where everyone gathered. However, on a daily basis, I navigated all those steps totally on my own.

Friendships made, early on, were friendships that live on even today. I was different but accepted. Sure, occasionally different is picked on, picked last; but because I met my school mates at a time when children have few preconceived notions, for the most part, I had a fairly normal school experience. I’ve always felt my public-school experience, and the general acceptance I always felt – from classmates to teachers – is what helped to form my feelings of self-worth.

Of course, during those early growing up years, I was a regular client of Easterseals “treatment centers”. I had physical therapy, fortunately not needing occupational or speech therapies. Occasionally, at the treatment center, I would meet with the great Dr. Burton Chance, an early pioneer in the field of treating handicapped children. My years of physical therapy, years of wearing leg braces, were free, courtesy of the “Easterseal Society”. Generous donations then, as now, really do change the course of life for Easterseals children whose families might not, otherwise, be able to afford the cost.

After high school graduation, I went on to college. Then, two months after college graduation, I began my first full time job that would end up being a 36-year career in state government. Seven years ago, I retired from that career.”

Since 1960 the world has evolved and great strides have been made to provide individuals with disabilities greater equality and access, particularly in our schools. Easterseals was at the forefront of advocacy to pass the American Disabilities Act and has always sought to provide innovative services to help people with disabilities find greater independence. Today, there would be no doubt that Susan would attend public school with her peers. Today, Easterseals breaks down barriers to inclusion and stereotypes before they are ever built; our Friendship Academy preschool program integrates children with and without disabilities to learn and grow together. This innovative approach to preschool began in 2006 and, locally, has had significant impact for participants.

But we are far from done.

When I asked Susan if she has seen a significant difference in society’s perception of individuals with disabilities she responded,

The treatment of those who are “different” – physically, mentally, racially, ethnically, gender based, etc. – hasn’t really changed all that much. There have always been – are now – some who are compassionate and enlightened. People who don’t flinch at having normal interaction with those who are perceived as being different. Who help others when they see a need.

But, we also live in a world where threats of all kinds could be just around the corner. A world where many seem to be looking out just for themselves. To them, dealing with someone who is slower, or in need of assistance, is an inconvenience they’d rather avoid on their way to protecting themselves. I’ve often wondered how people like that would handle themselves, or a loved one, becoming suddenly disabled. Would they be angry when they see a handicapped parking space being taken by someone who, literally, sprints from car to building? Would they expect assistance as their “right”?

I’ve been one of the lucky Easterseals children in that my disability, for most of my life, did not hamper or define what I wanted to do. Much of the credit goes to family, friends and teachers I had at each step along the way. But, of course, had it not been for Easterseals and the services they provide, the story might have been totally different.”

It is critical that Easterseals continue to advocate, continue to innovate, and continue to ensure that individuals like Susan have the resources and services they need to live, learn, work and play in their communities. Join Easterseals for our next 100 years where, together, we will work to build a future where everyone is 100% included and 100% empowered.

susan_blog_photo

Newspaper clipping of Susan as a child.

Sometimes You Just Gotta Have Some Fun

by Maggie Cusak

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The winter months in a school can be long and hard. Children cannot go outside, teachers feel cooped up and administrators feel the stress of keeping everyone happy and safe during those long cold months. At the EI Center, the GROBO committee, a group of coworkers has been committed to Getting Rid of BurnOut and reminding people that work can be fun! The group has sponsored activities during the workday, and social gatherings outside of work. During the month of March, the committee sponsored a door-decorating contest for all offices and classrooms.

Staff selected a children’s book or popular author and got to work on their creations. The doors, to be judged by three impartial coworkers, were designed to not only be pretty, but also interactive and fun. The doors made familiar stories come alive with switch-activated lights, manipulative features and voice output devices. Each door incorporated children’s artwork as well as staff creativity and imagination. Each door reflected a small piece of the classroom’s spirit or office’s expertise. For example, the Occupational Therapists created a door featuring Pete the Cat and His Four Groovy Buttons that incorporated the ability for students to practice buttoning his sweater, and tying his shoes. One of the classrooms featured several textured dinosaurs from a beloved Barefoot Book called The Dinosaur Rap, as well as a voice output device that played a repeated phrase in the book.

Throughout the first week of March, students and staff have enjoyed walking around the school and operating the buttons, and moving the pieces of each door. It’ll be a test to see which door survives the longest.

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Extended Family Ties

by Jeanine Johnson

Over the holidays I gave a lot of thought to family. The definition of family in many legal contexts denotes “individuals related by blood, marriage, or adoption” but there’s other definitions that are broader, encompassing groups of individuals not related by these things. At Easterseals we embody the broader meaning. I am entering my 4th year of employment with Easterseals and the past 3 years have been wonderful. I have had many challenges which have been outweighed by unexpected and welcomed joys. I truly feel that my family has been extended by the relationships I have developed with some of the families here at Easterseals.

One of the things that gave my holiday season a great start was hearing from the family of one of my favorite students that no longer attend Easterseals, Maximo! I received updated pictures of him and his family, which show how much he has grown, and information on all his progress over the last year. They could be crowned one of the cutest families ever and I feel blessed that they have continued to let me, in some small way, be a part of his life!

Over the holiday break I met up with one of my other favorite graduates, Mung. My daughter Autumn and I had the pleasure of spending time with him at the Academy of Natural Sciences. His mother doesn’t mind that we steal him away for a few hours. It is so nice to see that his indomitable spirit is still fully intact, that he is adjusting to the change in schools and making progress both physically and academically. I enjoy outings with Mung because he has a sense of humor and sarcasm that is way beyond his years. He is one of the brightest and most intelligent children I have ever had the pleasure of knowing. We always have a good time and he is always saddened, with tears flowing, by our departure. I assured him that as long as he will have us, we will be around!

I know I’ve mentioned this before, but I love, love, love the fact that at Easterseals, regardless of your position, you have the option to be as involved with the children as you choose (well, as much as your workflow allows). I am not part of the classroom staff but I was gifted with the opportunity to accompany the Owls class on their annual trip to the light shows at both the Comcast Center and Macy’s and then the Dickens House exhibit. I was paired up with another cutie, Naji, who has fast become one of my favorites. Wait, should I be saying that? Oh, well. In actuality, I have a lot of cuties that I adore who visit me every day! Every year brings opportunities for new connections. I have daily reminders of why what I do matters!

I have come to understand how my mother, a mother of 8, still had room in her heart and life for the ton of other children that referred to her as mom. Families can be comprised of the truly invaluable relationships one builds throughout life, and love truly has no limits.

Lifetime Imprints

by Jeanine Johnson

The other day I was sitting and reflecting fondly on the last year. I made a lot of meaningful connections with the children here at Easterseals. As I have spoken of before, I was both sad to see some leave, but excited for the growth and progress that enabled them to move forward, on to the next adventure in their lives. I was comforted in the thought that maybe, just maybe, I’d be able to hold on to some of these connections, at least a little longer. I’m sitting here smiling because I have. Don’t know how long it will last, but I am holding on to and enjoying every opportunity that presents itself.

In August I attended a 5th Birthday party for Maximo. He’s a former student who left Easterseals early because his family relocated. During his time here he managed to capture everyone’s heart. We were all disappointed that our time with him was cut short. I was overjoyed that I was invited to share in his birthday celebration. It was nice being able to see him and, to once again, experience that magical smile. His mother sends me pictures periodically, which always brightens my day immensely.

In December I met up with one of my favorite graduates, Mung. My daughter, Autumn, and I treated Mung and his mother to lunch in Center City, Philadelphia. We had an opportunity to catch up on all that has been going on with him and his transitioning to a new school. He has always been somewhat of a character having “beyond his years” humor and sarcasm. I was delighted to see that hadn’t changed.

What’s been very evident to me is how much that Easterseals has meant to these families. I am so glad that their faith in entrusting us with the care of their children was well placed. The impact our programs have for these children will remain with them for years to come. The impact the children have had on me will last my lifetime.

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lunch with Mung

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Maximo’s birthday