Category Archives: General info

Music and Memories

by Sabrina Stafford

When I received the news that I would be interning at Easterseals back in December of 2015, I was ecstatic. Being the oldest sibling of two children with special needs, I am used to most special education programs being familiar with my family; but this was different. Easterseals had been a part of not only my brother and sister’s lives but also mine. I attended the Sibshop program that was available in the evenings to siblings of children who attended Easterseals. This program was very important to me as a little girl (and I’m not just saying that because they had free pizza).

Sibshop taught me that although being a sibling is difficult, it is also incredibly rewarding. My siblings are a blessing. Without them, I wouldn’t have been able to easily learn values such as patience, empathy and hope. When I walked into the doors of the Delaware County Division of Easterseals after accepting the position as the Music Therapist, I felt like I was walking into Easterseals as a little girl back in the early 2000’s.

My brother, Sammy, graduated from Easterseals in 2000. He is currently 22 years old and a graduate from Elwyn’s Davidson School. Sammy once was a student in the APS classroom. Sammy received in-home services such as physical, occupational, and speech therapy. In fact, Ms. Paula, Sammy’s previous PT still works at Easterseals today. What a surprise it was for me to recognize a familiar face on my first week as an intern! Sammy is healthy and strong and enjoys his days socializing at home with family and his nurses.

My sister, Sophia, graduated from Easterseals in 2006. She is now 17 years old and attends a life-skills class at Penncrest High School. Sophia was one of the first children to attend the Friendship academy at the Delaware County Division. Sophia continues to enjoy school, especially socializing with peers her age. She attends all of her high school dances and is also a member of her student council and honors society. Sophia also works at The Media Library as part of her life-skills curriculum.

I am a proud sibling of both Sammy and Sophia. Of course my special family has come with challenges, but those challenges are heavily outweighed by the benefits. Easterseals has been a small-knit community for me and my family, and continues to be a supportive environment for me as a newly professional Music Therapist.

Although Sammy and Sophia have both graduated from Easterseals, they bring the spirit and warmth of the Easterseals community with them. They will continue to hold Easterseals in their hearts, just as I continue to do every day. It has been such a rewarding experience for me working at Easterseals; I feel like I was born to have this job. I am so very thankful for the life experiences that prepared me for my endeavors at Easterseals. Because of this, I wake up every day with a smile knowing that without my siblings, and without Easterseals, I wouldn’t be the person I am today.

Cardboard Fairy

by Susan Lowenstein

What if I were to tell you that there is a cardboard fairy that visits Easterseals in Bucks County every few weeks? She delivers hand-made adaptive equipment created out of cardboard that our children can use during their day at school to be more successful. You would think I have lost my mind. But it’s true! Well, sort of true. The material that this “fairy” uses is a sturdier and thicker version of cardboard called tri-wall. It can be purchased from stores like Staples or Lowe’s, but has to be specially ordered. So…have I piqued your curiosity? Want to learn more about our “cardboard fairy”?

Her name is Dorothy Hess. She was a Pharmaceutical marketing executive for many years, but now that she is retired, she is using her creativity and resourcefulness as well as her artistic abilities to help the children at Easterseals achieve their full potential! How does she do this, you ask?

Dorothy completed a 3 day volunteer training through a company called Adaptive Design Association. It was this training, along with her own problem solving and analytic skills, that have prepared her to come to Easterseals to design and create various products for our children. Some examples include:

  • A completely customized chair for young boy named Javohn who attends our APS program. We were having difficulty fitting him in any of our other student chairs. Javohn has shorter legs and arms, but a longer torso compared to his typically developing peers. We had trialed him in many of our chairs, even those that were adjustable, but we were unable to give him the support that he needed to sit upright in class. But never fear, the “cardboard fairy” is here! Not only was Dorothy able to create a chair that fit this young student perfectly, she painted the entire chair and even hand drew an Elmo on the side of it, just to give it that fantastic preschool look!

Javohn and Dorothy

 

  • Full length adjustable back supports, mounted directly to the back of our standing frames that we use with children who are unable to stand without support. These back supports have helped make it easier for our staff to position children in our standers, while providing the additional back support that some of our kids need to stand in optimal alignment.
  • A customized tray for an adaptive chair which for some time we were unable to use secondary to a broken tray (the product had been discontinued). This is just the first prototype of hopefully many more trays to come, as we have several more chairs that need new trays in order to be used for our children’s educational activities.

The cardboard fairy already has several other projects in the works for us. I can’t wait to see what she brings next time she visits!

Eye Gaze Technology Research

by Sandy Masayko

The AT Department at Easterseals is involved in action research in the field of eye gaze technology for young children. In November, the Easterseals AT Department hosted Dr. Maria Borgestig from Linkoping University in Sweden and Dr. Namrata Grampurohit of Thomas Jefferson University to develop our collaboration on research into eye gaze technology for young children. Dr. Borgestig guided the Easterseals AT Team in the implementation of several standardized measurements, and we shared the results of our own Easterseals eye gaze study, which is now in its third year. Dr. Grampurohit is collaborating with us in obtaining IRB (Institutional Review Board) approval for our study through Jefferson and our collaboration with the Swedish study. Currently, three children are enrolled in the Swedish study and seven children are enrolled in the Easterseals study. This is unfunded research which we are completing to help us make the best decisions possible about our children.

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From left: Joy McGowan, Director of Augmentative Communication; Dr. Maria Borgestig of Linkoping University, Sweden; Sandy Masayko, Director of AT; Laurie G. McGowan, AT Specialist

Presenting at PCOM

by George Russo

On Tuesday, January 23, 2018 I had the honor of giving a patient perspective presentation to 250 second-year medical-students at the Philadelphia College of Osteopathic Medicine (PCOM). This was a request from my doctor at PCOM (Dr. Michael Becker). He thought it would be a great opportunity for the med-student to learn how to interact and communicate with a patient who has a disability. Such as, in my case, cerebral palsy.

They asked many great questions? One question was: How do you cope with having a disability? Another question was: What did the Americans with Disabilities Act mean to you?

This was one of the most rewarding two hours I have had in my life. I’m looking forward to going back again next year.

 

 

Reflections on a Week of AT in Costa Rica

by Sandy Masayko

Almost a year ago, Susan Tachau and I were contacted by Connie Del Rosario Zúñiga, a teacher we know in Ciudad Quesada, Costa Rica to see if we would come to Costa Rica to share information about Assistive Technology, Communication and adaptations with the teachers and parents at Centro de Educación Especial de San Carlos Amanda Álvarez de Ugalde. The school serves children with disabilities such as cerebral palsy, Down syndrome, intellectual disabilities and more, in an agricultural region north of San Jose. After many email exchanges and with the help of Google Translate, we set off for Costa Rica at the end of October and spent a week working at the school, followed by a week of touring in the country.

“No tenemos nada (we have nothing),” our contact had informed us by email. Based on Susan’s experience as Director of PA AT Foundation and as a parent of a man with a disability, and my experience as Director of Assistive Technology at Easterseals of SE PA, we planned to share our perspectives on disabilities and adaptations and to learn from the professionals, parents and students at the school. Susan decided to focus on how she helped her son prepare for independence and work, and to discuss mechanisms for acquiring assistance. Based on my experience with AT for a variety of students, I decided to concentrate on using switches to activate toys and appliances, adapting books and adapting toys. For this reason I packed two suitcases with adapted puzzles and books to leave with the school as samples, and I included a PowerLink, switches and battery interrupters that I purchased on EBay. (The TSA left a note that they had inspected my bags filled with these mysterious items.) In addition I brought some battery-operated toys to use with switches and Spanish Handwriting Without Tears materials. Both of us brought PowerPoint presentations to share.

To our surprise and theirs, the school had more resources than they knew. Once I showed the teachers the technology I brought from the states they began pulling out boxes that had been tucked away. It seemed that they had a lot of equipment that had been put away in boxes by previous employees, but that current employees did not know what those things were. The teachers had speech generating devices, PowerLinks, switches and other things, and although these items were over 15 years old, most could still function. This is a great example of how Assistive Technology consists of both materials and services. Without services or support, technology can be useless.

We spent time observing in classrooms, setting up technology, and trying out adaptations with children and teachers. The response was positive and teachers asked many good questions. A highlight for us was making a presentation, with translation by a specialist from the Ministry of Education, to 28 parents and an occupational therapist and speech pathologist. Cultural differences were evident in some questions, such as when one parent asked Susan, “Why doesn’t your son live with you?” We also noted less emphasis on books than we have in our culture, but people were interested in seeing adapted books. Another cultural difference is that some children with disabilities attend school only part time or even just once a week because they live so far away. Parents stay at the school during the day to help the child with self-care activities if necessary.

Susan and I were involved in different activities our last day at the school. Susan accompanied Connie on a home visit to a teenager who spends all of her time in bed. Because she brought a language board with pictures of the body, Susan was able to show Connie how this girl could communicate pain using the language board. I did a demonstration to small groups of teachers to show them how to use the toys and adaptations we had set up. Veronica, an occupational therapist who had attended the earlier presentation with the parents, listened and translated. After hearing and translating my presentation to the teachers one or two times, Veronica took over the presentation and my job as a consultant was over! Exactly how I would hope this would end.

We completed our collaboration and changed our role to tourists. Costa Rica is an amazing country with friendly, tolerant, intelligent people and an emphasis on family. Volunteering gave us personal perspectives on this stunningly beautiful place and we believe we gave our contacts at the school different perspectives on adaptations and disabilities to be able to consider challenges in new ways. Pura Vida! Pure life! That is the Costa Rican motto. Our trip certainly enriched our lives.

Year of Change

by Jeanine Johnson

I am now at my 2nd anniversary with Easterseals. It has been a time of significant change and growth. This year’s graduation was bittersweet. I have had two whole years to develop strong bonds and love for the students. Seeing them graduate gave me all the mixed emotions I felt with my own child; worry, pride, sadness and joy all at the same time. I wasn’t ready to let go, though I know they were ready to move on. They have had the best foundation possible to facilitate their transition to the next chapter of their little lives. Some of the bonds I have formed I know will remain for years to come. Just knowing I don’t have to totally let go, at least not yet, brings a smile to my face!

I have become more entrenched in the culture and the mission of the organization. It’s hard not to when you see the miracles that take place on a daily basis. I participated as a team captain in Easterseals Walk With Me campaign putting my fundraising skills to work by soliciting donations and organizing raffles. I got to work alongside one of the Ambassador families to help make the family comfortable and this year’s campaign as successful as possible. It was a rewarding experience and I plan to continue my commitment in that way going forward.

I have recently accepted a new position within the organization which entails a lot more responsibility. That’s where my growth over the last year comes into play. I will approach this opportunity the same way I did the 11 story zipline across Freemont Street in Vegas, with fear, anticipation, excitement and wonder if I’ll make it across alive! I hope the outcome is the same as I experienced then, determination, exhilaration, courage and pride in stepping out of my comfort zone. My motivation to be successful will always be the same, it’s for the children and I don’t think I need any more than that to take me to the next level.

B is for Bus, and C is for Cupcake!

by Angela Shelly

ArtWorkBC

In The Friendship Academy, we like to display our friends’ art proudly! Last week our friends created buses for letter B, and cupcakes for letter C using dot markers for sprinkles. Our friends love to see their artwork displayed on our art wall!

When our friends created their B-B-Buses, they practiced using their fine motor skills and memories as they used a glue stick to place wheels and stop signs on the buses. They used their memories and imaginations to remember what color a school bus is (even our friends who don’t take the school bus yet!) and where the wheels go. Our friends got to use dot markers to decorate C-C-Cupcakes during C-week, and practiced writing the letter “C.” They also practice writing the letter of the week on the iPad, white boards, and several other mediums. Our student teacher in The Friendship Academy likes to have the children say the sound of the letter of the week as an “exit ticket” to finish up circle time in the mornings! Our friends are truly becoming masters of the letters of the alphabet!

Each week in The Friendship Academy in Montgomery County, we practice a new letter of the alphabet! Our friends are getting better and better at recognizing words that start with the letter of the week. We work together to create a long list of words that start with the letter of the week. Then, two friends get to pick a word for our Word Wall. We learn the ASL sign for those words, and practice the words and their signs throughout the week! Any visitor to The Friendship Academy would find that our friends are masters of the ASL signs for our word wall words: airplane, apple, ball, boy, cat, and cloudy.