Category Archives: child stories

The Fight to Stay Positive

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”.

A Parent’s perspective

Easterseals Physical Therapist, Melody Katz has been providing home-based physical therapy to Violet, a baby girl who has Down syndrome. The family is very loving and nurturing and Melody has enjoyed working with Violet. Her father wrote an article about Violet for Down Syndrome Awareness month that was published by the Courier Times and he allowed us to share.

You can see the original article here.

Coming up Violet this October for Down Syndrome Awareness

By John Anastasi

Born in May, Violet Anastasi has trisomy 21, an extra copy of the 21st chromosome that causes the characteristics associated with Down syndrome.

There are 31 days in October. Last year, Down syndrome crossed my mind during none of them. That was me in 2019. Before Violet.

Recognizing October as Down Syndrome Awareness Month may be one of the least significant things my daughter has taught me in the five months since I held her for the first time in the maternity unit of Capital Health Hopewell in Pennington NJ.

We knew before we arrived at the hospital on that Tuesday morning in May that our Violet had trisomy 21, an extra copy of the 21st chromosome. That additional piece of genetic material causes the characteristics associated with Down syndrome.

A prenatal screening had revealed the trisomy 21 way back in November. My wife Emily and I grappled with the news that Violet would likely be the one baby of 700 born in the United States with Down syndrome.

It was hard. As all would-be parents probably do when they learn they’re expecting, Emily and I dreamed about what kind of life our child would have. We did the same thing before her older brother Luke was born in 2017. Receiving the diagnosis prompted a painful course correction.

The day we found out, we left work early. We did research, we prayed, we struggled. We built the ultimate “fake-it-until-you-make-it” narrative we’d employ when we told our families and friends the news: Don’t say you’re sorry. Don’t feel bad for us. We’re excited. Our baby is perfect. She is exactly what God intended and we’re going to work hard to be parents who are worthy of her. Yes, she may have related health problems and cognitive delays but her possibilities are still limitless.

Some days we meant what we said 100%. Other days, we faked it.

Emily threw herself into the research. She found specialists, joined Facebook groups for support, bought books, watched videos, tracked down people she knew with children that have Down syndrome and set up Zoom calls with them. Emily also ran point on Violet’s early intervention efforts.

No stone would be left unturned if there was a chance that beneath that stone was something that’d give our baby a better shot or help Emily be the mom her daughter needed.

We met our sweet Violet and fell head over heels for her. She was healthy. She also cleared a number of hurdles that’d worried us from the beginning. She has an atrial septal defect (a hole in the wall separating the two upper chambers of the heart) but it’s small and the specialists say it needs only to be monitored at bi-annual checks. If it does get larger, Violet’s a good candidate for a less-invasive surgery that can be done in a catheterization laboratory.

A friend told me “anytime the doctor sees it and says ‘come back in six months’ that’s a win.” I’m going with that.

As befitting her extra chromosome, Violet is extra everything — affectionate, happy and curious with a smile that can light up the darkest corners of our minds and hearts. She also exhibits a scrappy, stubborn side that comes out during her physical therapy sessions. But it’s her sweetness we keep coming back to. It’s as immeasurable as it is unconditional.

Violet is challenging us every day to follow her example by living joyfully, loving completely and trusting absolutely. 

Even in our first five months as the parents of a child with special needs, we’ve been touched by so many people, many of them here in Bucks County, who’ve welcomed us into this community.

Specifically, we’ll mention the fine work of everyone at Bucks County Early Intervention, Jack’s Basket, a nonprofit that provides congratulatory gifts, support and resources to the families of children with Down syndrome, and Nothing Down, which works with the medical community to promote compassionate notification of Down syndrome diagnoses, plus up-to-date education and resources. And we highly recommend the Bucks County Down Syndrome Interest Group and the Down Syndrome Diagnosis Network for parents looking to get connected.

We’d also like to thank those in the Commonwealth for speaking out in support of Pennsylvanians with Down syndrome earlier this month.

They include Pennsylvania First Lady Frances Wolf, who spoke of the need to “honor the contributions of individuals living the Down syndrome to our communities…” and human services Secretary Teresa Miller, who encouraged Pennsylvanians to play an active role in celebrating and uplifting the stories and experiences of our family, friends and neighbors with Down Syndrome so they can live an everyday life with inclusion and opportunities that they are entitled to and deserve.”

Today, we celebrate Violet’s story in the hopes that, by telling it, we can do something small to help secure an inclusive future world for Violet and all of her brothers and sisters with Down syndrome.

We can’t wait to see what Violet does next, what she’ll be like when she’s older, how she’ll stare down prejudices and push back on those who try to tell her what she can’t do. It’s going to be amazing.

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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