Sharing, Networking & Learning at ATIA 2018

by Sandy Masayko

From presenting sessions to volunteering and networking, Easterseals of SEPA was an active presence at the Assistive Technology Industry Association Annual Conference in Orlando, Florida at the beginning of February.

Joy McGowan, Melissa Spada and Sandy Masayko presented “Eye Gaze Technology: Supporting Preschoolers in Participation, Play and Communication” to a standing-room-only crowd of over 60 people. The audience asked many questions and shared some of their experiences with the technology as well.  Laurie McGowan joined Susan Tachau of the PA AT Foundation and Kirby Smith of SunKirb to share “Smart Home Technology” to a group that included technicians who install this kind of technology as well as therapists and consumers.  Using easily acquired commercial devices has revolutionized home adaptations and has decreased costs significantly.  The presentation was well received.

As a volunteer, Marcia Leinweber assisted presenters in setting up their sessions and attendees in finding the workshops that they wanted to attend.  Sandy and Marcia also attended a workshop to develop the AT program at Easterseals.

Melissa Spada participated in a workshop where she learned to make adapted toys from low cost materials and picture symbols.  She even won a sample toy to bring back to Easterseals!

Networking was an important part of the conference too.  Our team caught up with Mary Elizabeth McCulloch of Project Vive, who shared her latest prototype of a low-cost speech-generating device.  Mary Elizabeth will be visiting Easterseals soon to explore some new switches and to pick up some of our adapted cars that need repair and additional adaptations.  Sandy visited with Lori Binko of LessonPix to hear about her experience of introducing adapted ride-on cars into her inclusive preschool class.  Easterseals of SEPA actually purchased one of the cars for her program several years ago for engineering students at University of Florida to use as a prototype when the students coached us on adapting the ride on cars.  We donated the completed car to Lori’s program, and it was gratifying to learn how the use of the cars increased her students’ abilities to move, socialize and develop cognitive skills.

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.

Behind the scenes of a Merry Christmas

 

Without a doubt, the Delaware Valley Children’s Charity toy drive is the highlight of each year for many of the Easterseals community.  This is an event that is impossible to describe, but must be experienced to fully appreciate the generosity of so many people.  Arriving at the ‘Y’, you are greeted by volunteers who have already spent hours upon hours carefully wrapping and labeling enough gifts to fill many trucks of various sizes.  For the children we serve, the Easterseals team is charged with moving the gifts from the trailers to rental trucks for transport to the respective programs, where they are offloaded and stored for pick up or delivery.  The energy and excitement of the Easterseals team is evident well before arriving at the Upper Main Line YMCA (which serves as the distribution center for the gifts) and explodes as staff see the packages of wrapped gifts, bicycles and assorted items.  Each gift is personalized and intended to make each child’s Christmas special.

This spectacular day truly ushers in the holiday season, literally bringing tears to the eyes of many first time participants as well as seasoned veterans.  This event, which enjoyed its’ 32nd year in 2017, has grown from serving 5 children to nearly 7,000; from 2 cars filled with gifts to 3 semi-tractor trailer trucks and 26 twenty-four foot moving trucks.  Easterseals is fortunate to serve as the conduit between the Delaware Valley Children’s Charity and the families of the children served by our community and we thank them for allowing us to be a small part of such a powerful expression of caring.  It is noteworthy that the donors will never see the faces of the children they’ve touched, only reinforcing the idea that this is all about the kids!  As their website offers, they believe “. . .  that a new winter coat or bag of toys may not change a life, but it can change a heart, and that is where it all begins.”

We thank the DVCC for allowing us to be part of such an incredible day!

 

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.

Learning about fire safety

by Angela Shelly

On October 23, 2017, Easterseals Gresh Center in Montgomery County got a very special visitor! October is Fire Safety month, so Lieutenant Eric Greiner brought his fire truck to school! Eric is the parent of two of our Friendship Academy students, Olivia and King. They were very excited to see their dad with his fire truck! All of our friends were so happy to learn about fire safety from a real fireman.

Lieutenant Eric introduced himself and showed our friends around the fire truck. They spotted the ladder, axe, hose, controls, and many other parts of the fire truck! Our friends discussed “stop, drop, and roll” with Lieutenant Eric and we learned that smoke rises, so in a fire, we should crawl on the floor, or get as low as we can. He read “Going to the Firehouse” by Mercer Mayer to all of our friends and explained all about how his firehouse is like the one in the Critter’s book. Lieutenant Eric’s fireman friend came out of the fire truck to help demonstrate how firemen wear their safety gear. Our friends learned all about the different parts of their safety gear and why they are important. Everyone got to high-five the geared-up fireman so that they knew he wasn’t someone to be afraid of, but someone to look for in an emergency!

When it was time for the firemen to leave, they got a call to go help put out a real fire! Lieutenant Eric turned on the siren as he left in the fire truck. It was very loud and exciting! All of our friends at Easterseals are very excited, because the fire company gave each child a very special plastic fire hat! We are so grateful to Lieutenant Eric Greiner and his fire company for visiting us and teaching us all about fire safety.

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.