Tag Archives: Early Intervention

A Parent’s perspective

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Easterseals Physical Therapist, Melody Katz has been providing home-based physical therapy to Violet, a baby girl who has Down syndrome. The family is very loving and nurturing and Melody has enjoyed working with Violet. Her father wrote an article about Violet for Down Syndrome Awareness month that was published by the Courier Times and he allowed us to share.

You can see the original article here.

Coming up Violet this October for Down Syndrome Awareness

By John Anastasi

Born in May, Violet Anastasi has trisomy 21, an extra copy of the 21st chromosome that causes the characteristics associated with Down syndrome.

There are 31 days in October. Last year, Down syndrome crossed my mind during none of them. That was me in 2019. Before Violet.

Recognizing October as Down Syndrome Awareness Month may be one of the least significant things my daughter has taught me in the five months since I held her for the first time in the maternity unit of Capital Health Hopewell in Pennington NJ.

We knew before we arrived at the hospital on that Tuesday morning in May that our Violet had trisomy 21, an extra copy of the 21st chromosome. That additional piece of genetic material causes the characteristics associated with Down syndrome.

A prenatal screening had revealed the trisomy 21 way back in November. My wife Emily and I grappled with the news that Violet would likely be the one baby of 700 born in the United States with Down syndrome.

It was hard. As all would-be parents probably do when they learn they’re expecting, Emily and I dreamed about what kind of life our child would have. We did the same thing before her older brother Luke was born in 2017. Receiving the diagnosis prompted a painful course correction.

The day we found out, we left work early. We did research, we prayed, we struggled. We built the ultimate “fake-it-until-you-make-it” narrative we’d employ when we told our families and friends the news: Don’t say you’re sorry. Don’t feel bad for us. We’re excited. Our baby is perfect. She is exactly what God intended and we’re going to work hard to be parents who are worthy of her. Yes, she may have related health problems and cognitive delays but her possibilities are still limitless.

Some days we meant what we said 100%. Other days, we faked it.

Emily threw herself into the research. She found specialists, joined Facebook groups for support, bought books, watched videos, tracked down people she knew with children that have Down syndrome and set up Zoom calls with them. Emily also ran point on Violet’s early intervention efforts.

No stone would be left unturned if there was a chance that beneath that stone was something that’d give our baby a better shot or help Emily be the mom her daughter needed.

We met our sweet Violet and fell head over heels for her. She was healthy. She also cleared a number of hurdles that’d worried us from the beginning. She has an atrial septal defect (a hole in the wall separating the two upper chambers of the heart) but it’s small and the specialists say it needs only to be monitored at bi-annual checks. If it does get larger, Violet’s a good candidate for a less-invasive surgery that can be done in a catheterization laboratory.

A friend told me “anytime the doctor sees it and says ‘come back in six months’ that’s a win.” I’m going with that.

As befitting her extra chromosome, Violet is extra everything — affectionate, happy and curious with a smile that can light up the darkest corners of our minds and hearts. She also exhibits a scrappy, stubborn side that comes out during her physical therapy sessions. But it’s her sweetness we keep coming back to. It’s as immeasurable as it is unconditional.

Violet is challenging us every day to follow her example by living joyfully, loving completely and trusting absolutely. 

Even in our first five months as the parents of a child with special needs, we’ve been touched by so many people, many of them here in Bucks County, who’ve welcomed us into this community.

Specifically, we’ll mention the fine work of everyone at Bucks County Early Intervention, Jack’s Basket, a nonprofit that provides congratulatory gifts, support and resources to the families of children with Down syndrome, and Nothing Down, which works with the medical community to promote compassionate notification of Down syndrome diagnoses, plus up-to-date education and resources. And we highly recommend the Bucks County Down Syndrome Interest Group and the Down Syndrome Diagnosis Network for parents looking to get connected.

We’d also like to thank those in the Commonwealth for speaking out in support of Pennsylvanians with Down syndrome earlier this month.

They include Pennsylvania First Lady Frances Wolf, who spoke of the need to “honor the contributions of individuals living the Down syndrome to our communities…” and human services Secretary Teresa Miller, who encouraged Pennsylvanians to play an active role in celebrating and uplifting the stories and experiences of our family, friends and neighbors with Down Syndrome so they can live an everyday life with inclusion and opportunities that they are entitled to and deserve.”

Today, we celebrate Violet’s story in the hopes that, by telling it, we can do something small to help secure an inclusive future world for Violet and all of her brothers and sisters with Down syndrome.

We can’t wait to see what Violet does next, what she’ll be like when she’s older, how she’ll stare down prejudices and push back on those who try to tell her what she can’t do. It’s going to be amazing.

Navigating Teletherapy

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by Adrienne Krysiuk MS, OTR/L

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My first day of work and I was super excited to see my kiddos since it has been a few weeks since I saw them last. I was also super nervous and anxious about doing teletherapy. I kept asking the questions, how was I going to manage a caseload of 17 plus kids and manage my own five year old? Most importantly, I could not understand how I was going to effectively provide occupational therapy intervention with preschoolers who have Autism Spectrum Disorder through a little screen. As the 2019-2020 school year already had its own set of challenges, not one of us could figure out how to do this type of hands off interaction with our Easterseals kids through this platform. As we reflected, the slew of emails arrived and we really started to panic. We all started going to online trainings, reading blogs and asking questions, conducted team meetings and practice runs with our colleagues. We all became computer experts in zoom and GoTo Meeting, we connected with colleagues and families throughout the day, sitting for longer than any of us are used to and then we became the minority of people who are still part of the workforce.

Since practicing teleintervention for a few weeks now, I am still trying to manage a hectic schedule between work and family. My son at this moment is trying to lay low because he knows he is getting away with watching way too much TV and no one has been after him to do his school work for awhile. The overall challenge of teletherapy has been a good learning experience and now familiar. In fact, at this point in time, I am a proponent of teleintervention and I feel this could be offered as part of the IEP plan. Of course I would rather be working directly with my kids and coworkers, but we (the school team) have always discussed how beneficial it would be to have a better way to follow up at home. When you are working on certain skills, such as managing challenging behaviors or carrying over potty training, it would be very helpful to coach the parent more directly in the child’s home environment; to really bridge the gap between home and school and further support our kiddos success. This unfortunate pandemic event has been that opportunity, possibly causing positive change and providing more options and choices for our families.

It has been an adjustment period for the parents to say the least and I give a shout out to all of our special needs parents out there, we see you and you are doing a great job, so hang in there, we got your back. Again, looking on the bright side through this unique time, I also find myself appreciating the small things that help me get through the day, one benefit I enjoy, I know many people share this with me, is illustrated in the picture. I cannot complain about the reduction of my now nonexistent commute, being able to get ready for work in 15 minutes or even caring if my comfy uniform matches or represents the correct season; dressed in my Easterseals teletherapy uniform.

 

Sometimes You Just Gotta Have Some Fun

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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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My Crazy Fulfilling Year at Easter Seals

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by Shannon Mahoney

After graduation, all Speech Language Pathologists (SLPs) must complete a Clinical Fellowship Year (CFY). The “year” is approximately nine months of working at their first job under the supervision of a licensed SLP. After this time, and with all the approved documentation, a Clinical Fellow (CF) receives a Certificate of Clinical Competence showing they are now a certified SLP; no longer in need of supervision. I recently completed my CFY at Easter Seals of SEPA. In the beginning I called my CFY a Complete Failure, but with the help of my fellow SLPs, an amazing classroom staff, and supportive supervisors, I now consider it the most Crazy Fulfilling Year of my life.

The transition from years as a student to a working adult was a jarring experience and I felt overwhelmed when I started treating students at our Early Intervention Center. There are so many people that can be involved within one single case, such as service coordinators, special instructors, speech/occupational/physical therapists, regular education teachers, parents, behavior specialists, and various support staff. As part of the team, I was initially unaware of the amount of communication and correspondence necessary to help my students succeed. I can only imagine what a parent must feel like going through the “system” as well.

As an early intervention provider, we are sometimes the first contact families have had with special education services. Being part of their satisfaction with the program and ultimately, the progress of their child’s abilities was a daunting task at first. However, with the passion of each of my coworkers and the respect and appreciation from each of my families, I slowly began to become comfortable and confident in my clinical decisions. They helped me turn what I thought of as a complete failure, into one crazy fulfilling job. Working at Easter Seals has been the proudest moment for me because every single staff in this organization has the best interest of our students as their number one priority.

Our classroom teachers are constantly working to create engaging lesson plans using their skills to adapt tasks that our children can interact with and increase the students’ academic skills. My classroom teacher fought for the rights of each of her students if she felt they needed a different education setting or more supportive services put into place. She instilled in me a sense of passion for this job and the unyielding dedication to her students that all of our staff possess. My supervisor and director provided the most hospitable working environment that showed me how important it is to welcome families and make them feel comfortable during uncertain times. The other therapists in the building taught me the essentials of being a good clinician and that learning does not end; even if we are no longer considered students ourselves.

In the end, I learned more during my first 9 months at this institution than a person could have gained from years of schooling. The knowledge that I have been imparted from by my coworkers is invaluable because every day I saw people doing what they love. Even with a rough start, I can now say that I love what I do. I believe it is because of the values instilled in each employee at Easter Seals that makes this place so special. It is my hope that our families also see the passion and devotion that I see every day when I come to work. They are the reason we are here, and their children are why we all love what we do.

Dance/Movement Therapy with the Children at Easter Seals

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By, Michelle Baxley – Dance/Movement Therapy Intern at Easter Seals Early Intervention Center – SEPA

“What is dance/movement therapy? I’ve never heard of it.” Most often that is the reaction I get when people find out I am getting my masters in dance/movement therapy (DMT) and counseling. It’s an understandable question, as DMT is still a rather new field. DMT sits under the umbrella of the creative arts therapies with art therapy, music therapy, and drama therapy. Since its conception in the 1940s, DMT has grown into an internationally recognized therapy with its own national organization and is recognized as an accredited masters program in several universities around the world.

Here is some information to help you better understand DMT and its application to Easter Seals:

  1. What is dance/movement therapy?

The American Dance Therapy Association (ADTA) defines DMT as “the psychotherapeutic use of movement to promote emotional, social, cognitive and physical integration of the individual” (ADTA.org). What this really means is that dance/movement therapists use movement as a way to assess a person’s level of functioning in a variety of areas as well as using movement as an intervention tool to help an people reach their developmental goals. The end goal is ultimately to better integrate a person’s body and mind.

  1. How do you become a dance/movement therapist?

To become a dance/movement therapist you must complete a two-year master’s program in dance/movement therapy from an ADTA accredited university. Once you receive your master’s degree, you must complete a certain number of clinical working hours with supervision and then you may apply to become a Board Certified dance/movement therapist. I am currently finishing my second year of graduate school at Drexel University and have been interning at Easter Seals Early Intervention Center for the past nine months.

  1. My child has limited movement and is nonverbal. How could he/she benefit from dance/movement therapy?

If you think about it, everyone, even those with the most limited movement abilities, moves in some capacity. Movement is our first language. It is the first way infants explore the world through rolling over, reaching for various objects, and moving objects to and from their mouths and then to potentially crawling and walking. Even a head nod or the gesture of a hand is a movement. Dance/movement therapists use this movement, however small, as a means of nonverbally communicating with the child. We create a personal relationship with the child through movement and help that child find other forms of creative expression besides words.

  1. How does dance/movement therapy help my child at Easter Seals Early Intervention Center?

At Easter Seals Early Intervention Center, I use dance/movement therapy to help students create social interactions with peers; practice problem solving, turn taking, and listening; explore creativity in play; facilitate emotional expression; and promote self and emotional regulation all in a playful and creative environment. All of my goals for these children are aimed at helping them transition into kindergarten. Additionally, I work with the other occupational therapists, physical therapists, speech and language therapists, and music therapists to provide a more holistic treatment approach.

  1. Where can I learn more about dance/movement therapy?

Websites:

  • American Dance Therapy Association –

www.adta.org

      ●      National Coalition of Creative Arts Therapies Associations, Inc –

http://www.nccata.org/

  • Drexel University Master’s in Dance/Movement Therapy and Counseling –

http://drexel.edu/cnhp/academics/graduate/MA-Dance-Movement-Therapy-Counseling

Books:

  • Levy, F. J., Fried, J. P., & Leventhal, F. (Eds.) (1995). Dance and other expressive arts therapies. London: Routledge.
  • Naess Lewin, J. L. (1998). Dance therapy notebook. Washington, DC: American Dance Therapy Association.
  • Sandel, S. L., Chaiklin, S., & Lohn, A. (Eds.) (1993). Foundations of dance/movement Therapy: The life and work of Marian Chace. Washington, DC: American Dance Therapy Association.

Videos:

While DMT is still a young field, it is definitely growing and increasing its body of research every year. It’s a versatile therapy that can be adapted for any population. If you have more questions feel free to email me at mbaxley@easterseals-sepa.org.

Happy Moving,

Michelle Baxley,
Dance/Movement Therapy Intern at Easterseals Early Intervention Center – SEPA

Meet Lila and Emma

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by Melanie O’Brien

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Lila and Emma are 4-year-old twins whose personalities are as different as night and day. What they do have in common, aside from being adorable, is autism. In addition to autism, they each have unique needs and challenges. Lila, whose needs are more physical, began receiving services when she was about 3-months-old. Her therapists noticed that Emma, whose needs are more medical, might benefit from Early Intervention services for some feeding issues she was having. When it was time for the girls to transition to center-based services, a therapist recommended Easter Seals. Lila and Emma began attending the Early Intervention Center last year. Since they have started, Lila went from not talking, to stringing three words together very quickly. Emma is now starting to use some words. Both girls were given communication devices, that with such amazing progress, they have almost outgrown. Their cognitive skills are really growing and Lila and Emma are becoming quite social! When they aren’t busy wowing their parents, teachers and therapists with their progress, they are busying doing the things all 4-year-olds love. Together, they watch favorite shows, which include Bubble Guppies and Daniel Tiger and enjoying their favorite snack, Goldfish. Emma is big fan of technology. She loves to dance, especially in a twirly skirt. Emma may be Minnie Mouse’s biggest fan. Her wonderful sense of humor and love of laughter means you will often find her with a smile. Lila loves to read, Mickey Mouse is a favorite subject. She is a very affectionate little girl who loves to learn. Her quiet demeanor allows her to happily soak in the world around her. Emma and Lila are beautiful examples of how two girls can look similar, but be so uniquely beautiful.

Join Lila and Emma and all of the Honorary Ambassadors on June 4th at the zoo for our Walk With Me event!

Meet Cassidy

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At 5-years-old, Cassidy is sweetness, determination and sass all rolled into one adorable girl. She definitely does not let her Cerebal Palsy get in her way. After her family began to notice a developmental delay at 8 months, she began receiving home-based services from Easter Seals therapists.  They were all wonderful individuals who Cassidy began to adore. So, when the time came to transition to Preschool, the decision to choose Easter Seals for center-based services was an easy one. On her third birthday, Cassidy began attending the early intervention program in Montgomery County. Since then, with the help of teachers, therapists and her family, she has accomplished some amazing things! She has gone from a very low vocabulary to stringing together three-word sentences. Cassidy can now pull herself up to her walker and use it. Her fine motor skills have really improved, which can be seen in her love for coloring and painting. Arts and creativity seem to be in her genes, which is obvious in her passion for music. She loves music therapy at school and rocking out with her parents at home. Cassidy also has some pretty typical five-year-old passions…pizza, Disney movies and the Sprout Channel. Her charm and determination are powerful combination and we can’t wait to see what she’ll do next!

Meet Cassidy and all the Honorary Ambassadors at Walk With Me on June 4th at the Philadelphia Zoo.

Go Baby Go!

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by Susan Lowenstein

At the Bucks County Division, we have fun rolling, walking, running and climbing…our children have many ways they move around to explore their environment. But thanks to funding through our own assistive technology department, along with an enthusiastic team of employees and volunteers, we have also added “driving” to our list of modes of mobility. Yes, you read that correctly. Driving!

Following the lead of an engineer named Cole Galloway at University of Delaware who started the “Go Baby Go” program, we now have several adapted electric cars available at our Bucks County facility to trial with children who do yet have an independent way of moving around on their own. These cars were purchased directly through Toys ‘R Us and are just what you probably pictured in your head – those crazy fun electric cars you might see young children driving on a warm spring day in your own neighborhood.

However, these cars were adapted by a team of volunteers under the direction of Easter Seals’ very own assistive technologist, Laurie McGowan, so that a child with a disability can access specially mounted switches to make the car move. Instead of having to press a pedal with a foot to propel the car forward, our students only have to reach forward and press a large switch (the “go” switch) which is mounted directly in front of them on the steering wheel. In addition to the “go” switch, some of the cars have also been adapted with additional seating support systems, so that a child who is unable to sit up independently can be supported in an upright position and still drive! One of the cars has even been equipped with a horn, which is a switch mounted on the side door and can easily be accessed by a child who is driving the car. So not only can our children drive, but they can “honk” at oncoming pedestrian traffic!

One student who is frequently seen driving down our hallways in our adapted “Barbie” car is Julianna. Julianna can take steps in her adapted gait trainer (which she does on a regular basis), but can cover a lot more ground in her car. We use large pieces of foam around her trunk to help her sit in an upright position. Additional foam is also used to help support her left arm so she can reach the “go”switch with ease. With just the touch of one of her left fingers on the big red “go” switch mounted to the steering wheel, she speeds down the hallway easily, searching for some of her favorite friends and staff at school!

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Another student who has recently tested out her driving skills at Easter Seals is Madison, a young girl who just happens to be a classmate of Julianna’s. Madison just recently starting taking steps in a gait trainer at school, but like Julianna, is not quite strong enough (yet!) to walk on her own. It did not take Madison long to figure out how to push the “go” switch with one hand, and honk the horn with the other! Watch out, friends, because here she comes.

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Much research is published regarding independent mobility and its link to cognitive and social benefits for children. The girls’ smiles light up the school when they can move from classroom to classroom, without tiring, and say “Hi!” to many of the their other friends and staff in other classrooms! Keep on driving, girls. And know that you were warned, pedestrians, if you hear a honk coming from behind you in the hallways, you might need to move over and make room for our newest drivers!

Meet Georgia

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by Melanie O’Brien

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When sweet 4-year-old Georgia was born, everything seemed pretty typical. However, when she was about 10-months old, her mom noticed her eyes seemed to be twitching and she wasn’t meeting her milestones. Georgia has a partial trisomy 14 disorder. She began receiving home-based services, including occupational, physical and speech therapies and special education. When Georgia turned 3, she started attending Easter Seals Early Intervention Center for half-days. She was doing well and it was quickly determined that she would really benefit from full-days in the Approved Private School program in the Yaffe Center. Since then, she has gone from a quiet and shy to very social! Georgia loves going to school and has become very interested in the world around her. She is initiating play, trying to dress herself and going up and down steps. When she isn’t at school, Georgia is playing with her sisters and taking advantage of all the museums and cultural opportunities that Philly has to offer. Georgia loves color and to laugh and she is painting the world with her beautiful smile!

Meet Georgia and the other Honorary Ambassadors at Walk With Me on June 4th at the Philadelphia Zoo. You can learn more and register at www.walkwithme.org/philadelphia.