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.

Screen Shot 2019-02-19 at 10.48.02 AM

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

Screen Shot 2019-02-19 at 10.48.15 AM

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.

Screen Shot 2019-02-19 at 10.48.24 AM

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!

Screen Shot 2019-02-19 at 10.48.34 AM

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.

Visit to St. Giles in Hobart, Tasmania

by
Sandy Masayko

Have you ever traveled over 10,000 miles, entered a new place and felt like you were at home? That was my experience in January when I visited St. Giles, a branch of Ability First Australia, which is an organization in Australia similar to and affiliated with Easterseals in the US.

My visit came about at the invitation of Occupational Therapist Lisa Melvey of St. Giles, who visited our Yaffe Center when she was on her Easterseals study tour in the fall. Lisa encouraged me to visit when she learned I would be in Australia in January.

Lisa gave me a tour of the modern, light-filled facilities where the agency offers speech, physical and occupational therapy as well as autism, behavioral and social support services, seating and assistive technology to people of all ages and their families. In addition to therapy services the agency has several unique programs, such as “Chat Fit” for adults who use augmentative/alternative communication (AAC). The participants use their communication systems while participating in fitness groups, leisure or community activities and enjoy socializing while honing their use of AAC. Another unique program that is offered by St.Giles is a Toy Library that is open to the community as well as families who are participating in therapeutic services at St. Giles.

Tasmania is a beautiful island state of Australia, located south of the Australian continent, with a climate similar to that of Northern California. About the size of West Virginia, it has over 500,000 inhabitants. Most of the island is rural so providing services in remote places can sometimes be a challenge. St. Giles has 3 main locations and also serves people in their home and community settings. To learn more about St.Giles, visit StGiles.org.au

Visiting St. Giles was a highlight for me when I traveled to Tasmania. With its friendly people, farm fresh foods, beautiful topography and amazing animals, Tasmania is a wonderful place to visit.

Extended Family Ties

by Jeanine Johnson

Over the holidays I gave a lot of thought to family. The definition of family in many legal contexts denotes “individuals related by blood, marriage, or adoption” but there’s other definitions that are broader, encompassing groups of individuals not related by these things. At Easterseals we embody the broader meaning. I am entering my 4th year of employment with Easterseals and the past 3 years have been wonderful. I have had many challenges which have been outweighed by unexpected and welcomed joys. I truly feel that my family has been extended by the relationships I have developed with some of the families here at Easterseals.

One of the things that gave my holiday season a great start was hearing from the family of one of my favorite students that no longer attend Easterseals, Maximo! I received updated pictures of him and his family, which show how much he has grown, and information on all his progress over the last year. They could be crowned one of the cutest families ever and I feel blessed that they have continued to let me, in some small way, be a part of his life!

Over the holiday break I met up with one of my other favorite graduates, Mung. My daughter Autumn and I had the pleasure of spending time with him at the Academy of Natural Sciences. His mother doesn’t mind that we steal him away for a few hours. It is so nice to see that his indomitable spirit is still fully intact, that he is adjusting to the change in schools and making progress both physically and academically. I enjoy outings with Mung because he has a sense of humor and sarcasm that is way beyond his years. He is one of the brightest and most intelligent children I have ever had the pleasure of knowing. We always have a good time and he is always saddened, with tears flowing, by our departure. I assured him that as long as he will have us, we will be around!

I know I’ve mentioned this before, but I love, love, love the fact that at Easterseals, regardless of your position, you have the option to be as involved with the children as you choose (well, as much as your workflow allows). I am not part of the classroom staff but I was gifted with the opportunity to accompany the Owls class on their annual trip to the light shows at both the Comcast Center and Macy’s and then the Dickens House exhibit. I was paired up with another cutie, Naji, who has fast become one of my favorites. Wait, should I be saying that? Oh, well. In actuality, I have a lot of cuties that I adore who visit me every day! Every year brings opportunities for new connections. I have daily reminders of why what I do matters!

I have come to understand how my mother, a mother of 8, still had room in her heart and life for the ton of other children that referred to her as mom. Families can be comprised of the truly invaluable relationships one builds throughout life, and love truly has no limits.

Maker Spaces Launched at Easterseals SE PA with Workshops

by Sandy Masayko

The Assistive Technology Department, working in collaboration with our grant funder Comcast and our community partners Science Leadership Academy, Drexel University, Project Vive and MakerBot, is excited to report that our development of Maker Spaces at Easterseals SE PA is well underway! This project consists of two parts: Education of Easterseals staff and local high school student education to provide the basis for creation of Assistive Technology (AT); and setting up maker spaces at each Easterseals SE PA approved private school. The maker spaces will be supplied with 3D printers, soldering kits, moldable plastics, tools, and more. But before anyone can use this new high tech equipment, they need to learn how to design solutions to meet needs and the basics of use of the tools. To meet this need, the AT Department organized two workshops in the fall.

Workshop 1 was held at Drexel University’s Westphal College of Design in September and focused on 3D printing. After a review of AT by Sandy Masayko and an overview of the multiple use of 3D printers by Laurie McGowan, Laura Slatkoff shared her personal experiences in discovering 3D printing and using it to make a customized keyguard for a student. Marcia Leinweber introduced step by step instructions for Computer Assisted Design. Mary Elizabeth McCulloch of Project Vive presented concepts to consider in the design process. The thirty participants then got to work on their shared computers to design the top of a switch. AT Staff members, assisted by Science Leadership Academy (SLA) students who were familiar with 3D design, coached the participants. During the workshop, the SLA students increased their knowledge of AT, and they also videoed and photographed the workshop. At the end of the workshop, Easterseals staff members had homework to complete over the two months before the next workshop: participants were asked to finish their designs and email them to Marcia for printing on the Makerbot 3D printer.

The next workshop, held at SLA in November, allowed the participants to complete their design by constructing a switch for AT. Switch assembly necessitated soldering and wiring of the switch, activities taught by Mary Elizabeth and Joey McCulloch from Project Vive. The participants also learned what tools were in the Maker Spaces and how to use them. Laurie McGowan led participants in creating battery interrupters that can be used to enable toys and devices to be activated with a switch. Sandy introduced how to use a moldable plastic that can be used to create adaptations. As with the first workshop, the SLA students proved to be great coaches to ES staff members as they learned to wire and solder.

Response by the staff to the workshop was overwhelmingly positive. In our pre and post testing for each workshop, the staff members indicated that they significantly increased their knowledge of AT, 3 D printing and tools for creating solutions for people with disabilities. The next phase of the project will be establishment of the Maker Spaces at each approved private school sites. We can’t wait to see what our staff will create!

OT makes walks a sensory adventure in Bucks!

by Kathryn Wallace

In Bucks County, our Occupational Therapy department organized a workshop to help revamp the hallways and meet the needs of the students. The students in our school take daily walks around the building. These walls will give the students may opportunities to interact with a variety of sensory experiences. We are so excited for them to be mounted! A big THANKS to our wonderful OT Department.