Category Archives: Community Partners

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!

 

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.

Build, Engage, and Change with Adaptive Design Association Inc.

by Jo Booth

On Friday, July 28th, I had the good fortune to be able to attend a training sponsored by the Adaptive Design Association Inc. in New York City. Through a grant, the Adaptive Design Assoc. hosted a training for designers, therapists, and skilled craftsmen from the Philadelphia region on the construction of adaptive equipment for people of all abilities. Gratefully, EasterSeals of SEPA was well represented! The goal was to spread both techniques for making products as well as to set up pockets for collaborators to continue this important work by consulting and constructing items of need within their home communities. It doesn’t really matter what “the norm” is, as we all have needs and will most probably require an adaptation at some point in our lives. You see, sometimes it may be to change the angle or view for an individual so that they can complete their work, provide postural support, or be able to complete daily routines or activities of daily living by changing the structure up a bit. If you begin to presume competence in others, you may find yourself pleasantly surprised by what a person is indeed capable of doing or understanding.

About ADA

The Adaptive Design Assoc. was founded by the vision of Alex Truesdale so that the designs and their construction could improve the quality of life for individuals to simply function within their environment. ALL items are customized for EVERY CLIENT and can be made from simple tools and construction materials. Many of the adaptations were made from tri-ply cardboard, glue, and “wooden nails”. The lifespan of the adaptive devices made from these simple but humble materials far outlasted many commercial materials, and in fact, many could be adapted quickly as a person’s needs changed rather than purchasing new equipment altogether. Alex in her overview of her life’s work described the unique relationship between the designers, creators, and clients. She stated that this relationship was the ground or heart of the creative process. When pieces were made from mutual respect, open communication, and yes – love; they could address the needs of the client in a more organic and direct manner. One of my favorite pieces was a stairway to assist a child in independently getting in and out of his wheelchair painted in a Spiderman motif that was totally awesome! When viewing pictures of the designs from the past, it was fascinating to see that what stood out was the individual, and not the design itself. The technology had simply fallen away from view. The Motto for this community of makers is: “Build for One, Engage Everybody, Change Everything™” . At ADA, anything is possible.

Participating with the Adaptive Design Association

The ADA encourages active participation from all as they believe that by using many hands, no detail goes unnoticed. Improvements spontaneously arise from collaborative efforts. The ADA offers many opportunities for learning and involvement. Visiting their website is not only inspirational but also a source for people to learn – tutorials on the process of making adaptations are offered on the website. Workshops, intern positions, and opportunities to volunteer are all ways to become involved and so that you can make a difference in your community. Over the next few months, I hope to show you in more detail, the process of learning to fabricate adaptations that are made with cardboard.

8 a.m. Hot Dogs are Mission Critical for Walk With Me!

by Liz Graham

There are quite a few things that are absolutely critical to making Walk With Me successful – Ambassador families, volunteers, dedicated team captains, sponsors, donors and after one misstep I learned…HOT DOGS! I naïvely underestimated the importance of the 8 a.m. Hatfield Hot Dog one year; it is a lesson I did not need to learn twice. Easter Seals is so very lucky to have a longstanding community partner and corporate supporter in Hatfield Quality Meats. They have hosted golf outings, supported cause marketing campaigns, volunteered and of course donated hot dogs. Way back in 2008 I was managing my third Walk With Me event and planning was going well, until that fateful call from Steve Clemens in March. Hatfield Quality Meats had a company wide anniversary picnic the same day as Walk With Me and would be unable to attend. Generously they would still donate 2,000 hot dogs but would not be able to send their truck and grill set-up or be able to loan us their large outdoor event grill – everything would be in use at the picnic. I took a deep breath, considered how we could manage to cook 2,000 hot dogs on the Art Museum Steps and decided that logistically it wasn’t possible. We would have to find an alternative option for 2008.

I reached out to critical staff, volunteers and sponsors to get a consensus of what food items we could substitute for hot dogs – bagels, pretzels, snack bars, fruit…I actually thought I had come up with a reasonable plan to feed our participants at 8 a.m. on a Saturday morning in June.

And then there was mutiny.  I was wrong. There was adamant and unanimous feedback that we MUST have Hatfield Hot Dogs. How could I imagine Walk without them? What was I going to tell the lines of participants expecting their Hatfield Hot Dog? Did I want to ruin the event?!

So I called Steve Clemens, thanked him and Hatfield Quality Meats profusely for their generous donation and scheduled a pick-up of 2,000 hot dogs for two days before the event. How do you store 2,000 hot dogs for two days with no commercial refrigerator? Well I took some home, other staff took some home and we packed the two standard refrigerators at the office. Since the City of Philadelphia requires a special permit to use an outdoor flame we ordered electric hot dog rollers and got to work at 6 a.m. on the Art Museum steps. We never stood a chance. Hot dogs were cooked…SLOWLY. Hot dogs were consumed and enjoyed…RAPIDLY. Our food volunteers worked until they were completely exhausted. We had many comments that our participants enjoyed the event but it just wasn’t the same without Hatfield Quality Meats and the hot dog truck there. They missed Steve, Smiley and the staff that does the cooking.

After cleaning up the event, I got in my car and vowed to never host a Walk With Me event that Hatfield is unable to attend!

That year I learned just how strong of a partnership Hatfield Quality Meats and Easter Seals Walk With Me had formed. Our participants love and appreciate Hatfield’s participation, support and hot dogs. This partnership has continued to grow and strengthen, it has continued to add a vital component to Walk With Me through their donations of labor, food and love. But more so, this partnership continues to provide critical resources for the families we serve.

I so very much enjoy working with Hatfield Quality Meats and the Clemens Family Corporation. They are wonderful people with huge hearts and love of community. We are very lucky to call them friends and even luckier they know how to grill a mean dog!!!

 

Secretary of Education Visits Easter Seals

by Janet Rubien

The Alliance of Approved Private Schools was honored to host Secretary of Education Pedro Rivera, on Thursday May 18th. During the visit, Mr. Rivera toured the Easter Seals Schools in Philadelphia, a school that serves students with profound needs. While stopping in classrooms Mr. Rivera had the opportunity to interact with students, and participate in classroom activities.

After the tour, Mr. Rivera met with members of the Alliance of Approved Private Schools to discuss initiatives from the Pennsylvania Department of Education (PDE). Mr. Rivera addressed PDE’s commitment and efforts to address Teacher Shortages, Funding, and creating environments where all students can grow to their full potential. Mr. Rivera spoke passionately about protecting and meeting the needs of Special Education children. The Alliance of Approved Private Schools, Mr. Rivera, and PDE are looking forward to working together to help children across the Commonwealth of Pennsylvania.

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Easter Seals Presentation at CHOP Developmental Disabilities Conference

by Sandy Masayko

CHOP DD 5.12.17

Parent Laura Murphy and Easter Seals staff members Melissa Spada, Sandy Masayko and Joy McGowan (pictured in the photo) presented information about eye gaze technology for young children at the 41st Annual Children’s Hospital of Philadelphia Developmental Disabilities Conference on May 12, 2017.

Laura gave a parent’s perspective on how using eye gaze technology promotes her daughter’s participation in an inclusive public educational program as well as in her family life.  Over the years Laura has seen her daughter Sara progress from using just a few symbols, to phrases, to a system with over 100 locations on the screen and the ability to use spelling and word prediction to write and communicate using a computer.

Melissa, Joy and Sandy have presented information on eye gaze technology previously, but the presentation is evolving as they work with more children and add children to their study. Including a parent in the presentation added a valuable long term perspective to consideration of eye gaze technology and how students can progress with this technology.