Category Archives: General info

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.

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Newspaper clipping of Susan as a child.

Introducing our Volunteer Handy Man, Lew Oser

By Loretta Meola, Teaching Assistant in Bucks Division

Lew Oser has been volunteering his time and talent with Easterseals and has become part of the family. In the past, he has shared his creative woodworking skills by making several props for our carnivals. He has made two construction paper holders, and a tray holder for the Dolphin room. This year, Lew repaired the “practice” stairs in the school gym. He donates his “spare” time to complete these projects and provides all of the materials needed. Lew loves our Easterseals children! And we love Lew!

 

The Importance of Social Excursions

by Jeanine Johnson

I have had an opportunity to get to know the Owls’ classroom pretty well over the last year. I recently had the pleasure of accompanying the classroom on a trip to the Flower Show held at the Convention Center in Center City Philadelphia. I won’t lie, I wasn’t sure how the children were going to fare. It can be an overwhelming experience. Would they be bored? Would the crowds be too much? Would they get any enjoyment from it? I am happy to report that my worries were unfounded.

The children were in awe. I chaperoned my friend Naji. He “oohed” and “aahed” from the moment we stepped into the ballrooms. I was able to experience firsthand all the benefits the outings bring. It gave the children a chance to put into practice, in a crowded social setting, their listening ears, walking feet, being patient and waiting their turn. We got to practice identifying colors, objects and counting. Learning disguised as fun, how delightfully sneaky!!

The wonderful thing about spending time with the children is being able to see their progression. I have seen so much growth in all of these students both socially and academically. Hearing a child who wouldn’t speak in the past find their voice is astonishing. Watching a student sit through an activity, who in the past was restless, is satisfying.   Seeing the pride in their face when they complete a task correctly is gratifying. Seeing the friendships and bonds they have developed with one another is heartwarming. I have an ever growing respect for the teachers, teacher’s assistants, one-on-ones and therapists who work with the students on a daily basis. Their dedication, hard work and love for these children really does yield miraculous results. They see the potential and nurture it!

I revel in being able to be a small part of the children’s learning and growing experiences.

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How to help manage stress as a parent to a child/children with disabilities

by Shaquanah Watson

Stress management is an important skill for any parent to master but is it especially important for parents of children with disabilities. As a parent of children with developmental delays and/or a disability can come with some unique challenges. Here are some ways to begin your stress management journey that you can model for children and adults:

Positive Thinking – What you think is what you live, it all starts in the your mind: think positive thoughts even when you get negative results.

Keep realistic standards – Sometimes we can be very hard on ourselves. It is OK to ask for help from your peers. Its OK to say no. Saying no can be so hard for parents because we feel so responsible for everything; for an easier approach try “thank you, I appreciate that you thought of me, but I can’t host the PTO meeting this month.”

Take care of your physical needs – A little cardio or Yoga for 30 minutes a day is really a big help. It gives you time to wind down and relax your mind from the events of the day. I recommend you do it before you go to bed for a better sleep pattern.

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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The Sea of Easterseals

by Sabrina Stafford, MT-BC

Being able to say that I know what my true calling in life is at the age of 24 is a special gift that I have been handed.

I was blessed enough to ring in my New Year’s Day next to my sister wearing bright orange jackets on the Easterseals Float in the Rose Parade in Pasadena, California. I put my arm around Sophia as we waved for three hours at strangers who smiled and waved at us, wishing us a “Happy New Year!” Although my brother, Sammy, could not attend the parade with us due to his medical needs, I knew that he was safe, healthy, and happy at home watching us on TV.

Sophia and I were nominated by our local Easterseals affiliate to represent us nationally on the float. With us were 10 other individuals who have benefited from Easterseals. Although I was only with these individuals for a few short days, I was able to make connections that I still hold with me in my heart. I think about Reagan, who advocates for herself and others with verbal apraxia using social media as her outlet. I think about Danny, who gives a voice to those with disabilities and how important it is to have “hope” in our lives. I think about Lora and her overall passion for Easterseals (and Dr. Who). And I think about Kaison, our youngest float rider, who couldn’t stop talking about how excited he was to be on the float and celebrate Easterseals with the world. I could go on about how inspiring it was to not only ride the float with these individuals but spread the word about the magic of Easterseals with thousands of people.

About a quarter of a way through the parade, I saw something beautiful: a sea of orange. That’s right, I saw a whole section of people wearing orange hats, orange shirts, and waving orange tassels in the air. These people were cheering for us and clapping their hands. Amongst the sea, were my parents who I was lucky enough to bring along with me on this adventure. Although Sophia and I were on the opposite side of the float, we frantically spun our chairs around and waved our arms high up in the air to say hi.

Besides seeing and hearing this orange sea, I could FEEL it. I have never been in an atmosphere with so much pride, love, and honor as I did during the Rose Parade. These people were excited to celebrate Easterseals and celebrate all that makes up our disability inclusive community. Easterseals is my home outside of the home my parents have created for me, my brother and my sister. Although I am employed at Easterseals as a music therapist, my role is so much more than that. Thanks to Easterseals, I am a sibling, a disability activist, a daughter, a voice for my brother and sister and most importantly, I am myself every single day and that is what my true calling in life is.

 

Easterseals of SEPA Staff Attended & Presented at ATIA 2019

by Sandy Masayko

Six staff members from Easterseals of SEPA traveled to Orlando to attend the Assistive Technology Industry Association meeting, January 30-February 2, 2019. For Laurie Spencer, Laura Slotkoff and Jo Booth, it was their first ATIA meeting; Marcia Leinweber, Laurie McGowan and Sandy Masayko were returning participants. This stimulating conference offered a wide array of learning opportunities in the field of AT, from workshops, to posters, to vendor demonstrations and networking.  All participants were very pleased with the conference.

Easterseals was well represented in the area of presentation. Laura S., Marcia and Sandy presented a popular poster session on using 3D printing and AT to promote student participation. Sandy also co-presented “Adapting Low Cost Kiddie Ride-on Cars for Early Mobility: Lessons Learned” with Mary Elizabeth McCulloch of Project Vive and AbleRacers. Laurie McGowan helped instruct people who participated in AT Maker Day.

Here are some of the comments our attendees made about their learning experiences at ATIA:

 

Marcia:

Wow, this is hard to narrow down!

My favorite was learning more about 3D printing tactile graphics and resources available for additional tactile graphics. I enjoyed learning a variety of topics and exploring current research topics. The AT Makers Day is always a favorite. I learn so much in such a short time. The creativity and enthusiasm are inspiring.

 

Jo:

My absolute favorite session was the one with Karen Kangas on positioning. She totally captivated us all with her wit and base of knowledge. She gave practical tips on how to assess by throwing everything you think you know – out the door. Her point was to have a fresh eye and focus on the person and their ability to function within their environment.

 

Laurie S:

I second Jo’s comments.

I loved all the practical sessions. I enjoyed getting more information and resources to help with coaching teachers and TAs in implementing AAC in the classroom.

 

Laura S:

It’s really hard to pick just one favorite part of the conference; I feel like I came away with so many practical tools and strategies! I really liked the presentation on adaptive art tools by Judith Schoonover. We’ve only been back at Easterseals for a week, yet I’ve already had the opportunity to make several adaptations to help students better participate in art and crafts.

 

Laurie M:

It is always difficult to choose what to go to, and just one class as a favorite. There are so many great offerings. This year I focused on computer accessibility and note taking. I discovered that the computer industry – both Mac and PC  – Google and Microsoft have really stepped up their game in accessibility for everyone.  And not only are they all free tools for everyone to use, many go across platforms. This is a  huge advantage for our transitioning students for OVR. I also enjoy the exhibit hall.  You get to talk directly with the developers and companies, ask questions and see all the new things they are working on.

 

Sandy:

Networking and sharing ideas at our poster session was really enjoyable. I learned that Easterseals of SEPA is really “cutting edge” with our introduction and use of 3D printing to make assistive technology.

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ATIA 2019 Easterseals of SEPA Participants, left to right: Marcia Leinweber, Laura Slotkoff, Laurie Spencer, Jo Booth, Sandy Masayko, Laurie McGowan

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Our poster session about 3D printed AT was very well received. The session included AT created by 3D printing for participants to inspect and try.

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The poster was created as an outcome of our Maker Space grant funded by Comcast and supported by other community partners such as Drexel, the Science Leadership Academy, Project Vive and MakerBot. Our poster will have its own blog post soon!

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Mary Elizabeth McCulloch of Project Vive and Sandy Masayko of Easterseals co-presented a session titled “Low Cost Adapted Toy Cars for Early Independent Mobility: Lessons Learned.” In January 2017 Project Vive partnered with Easterseals to provide a how-to workshop on car adaptations, and the ATIA presentation shared tips for effective car construction workshops.