Tag Archives: cerebral palsy

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.

 

 

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.

Why I participate in Walk

by Bill Barnes

Can’t. When I was asked to share my story as we prepare for Walk With Me 2015, the one word that kept coming back to me was can’t. My name is Bill Barnes and when I was born I was diagnosed with Cerebral Palsy. You see as I was growing up my Dad would often say to me that can’t wasn’t in the dictionary. His point to me was that he didn’t want to hear me say I ”couldn’t” do something. Since most of the times he said this I was in the midst of doing exercises and physical therapy, I was not too fond of that saying! Over many years I realized that he was hoping to set me up for a lifetime of success. I never really looked to see if can’t really was in the dictionary, but I have a sneaking suspicion it was!

So at some point I realized it’s not what you can’t do that’s important it’s what you can. Much of that was due to my parents, but the other part to that equation was Easter Seals. I began at Easter Seals as a very young child in the preschool program and also participated in the summer camp program. I also received much more physical therapy than I ever wanted. What I know now is what I can do in my life today has a lot to do with what Easter Seals did for me when I was younger. If they hadn’t pushed me who knows if I’d be a middle school teacher like I am today.

As I got older I began to understand what Easter Seals did for me and I wanted to give back to them as much as I could. Eventually, I became a camp counselor and a Camp Director for Easter Seals. I got to see firsthand how the therapists and teachers at Easter Seals are still striving to show children what they can do. I got to see how they work with each individual child to make sure they are the success that they can be. Just as importantly, I got to do the same for scores of children through the summer camp program. While the camp program no longer exists the magic of social media allows me to see the successes “my kids” have become. We all still call ourselves the Easter Seals family.

Just this past week, two things happened that reminded me how important Easter Seals has been in my life. I recently reconnected via social media with one of my first physical therapists. While wishing me a happy birthday she reminded me how much I “loved” coming to see her. None of the messages I received meant more because I know what she meant to my life. Then later in the week while at an alumni weekend event at my alma mater, Temple University, I was stopped in the middle of campus by a former camper of mine. I absolutely beamed as he told me of the great things he was doing.

I participate in Walk With Me each year because I have seen and been a part of the great work that Easter Seals does. The therapists, teachers, social workers and many others care so much about the children they work with. Their number one goal is to focus on what each child can do – and I know that someday they will look back with pride seeing the successes those children have become because of the work they do. Take it from me, there is no greater feeling!

Bill with Easter Seals parent and volunteer Jeannine Hesser

Bill with Easter Seals parent and volunteer Jeannine Hesser

Making Sense of How Sensory Processing Difficulties are Addressed in the Early Intervention System

by Anna Lassman

Sensory Processing and Sensory Integration are hot topics these days, particularly with children who have been identified as being on the autistic spectrum. Sensory issues can also affect kids with motor impairments. Families are often faced with many new and sometimes confusing concepts and terms. I hope to clarify some of the confusion.

Our senses play a big role in how we learn, interpret, adapt and cope within our environment. We take in all the information through our senses into our brain. Sensory Integration is the process by which we take information through our senses. The brain then processes that information and helps us determine how to respond. The responses are behavioral reactions that take the form of learning, inhibition, coping, and adapting. Sensory Processing is simply another term for Sensory Integration.

Our brain acts as a processing plant, finding what is important to pay attention to, what is something we need to ignore, and then planning how we respond. In an educational setting the goal is for kids to be calm, alert, focused, so that they can attend, refine their functional skills and learn.

Other terms relating to sensory processing include: tactile (perception of touch); proprioception (“sense of self” understanding how your body is positioned in space); vestibular (perception of movement in space).

Children with sensory processing difficulties seem to have perceived the information in a different way, and / or the inability to make sense of it. They are unable to adapt their response or have limited coping mechanisms Often the result is to underreact or overreact. For example, a child who has a hard time in a busy, noisy store may either hide, or begin to tantrum. They are unable to filter through the stimulation they are being exposed to. Often they either have a delayed or slow reaction and because of this low reactivity, they may “shut down” or avoid. In other cases, they may have an extreme reaction because of hyper sensitivity.

The most common approaches are described below:

Sensory Integration Treatment Approach – is individual OT treatment that involves a specialized setting with suspension equipment. The program is designed to improve the efficiency of the nervous system in how the use of the sensory system is interpreted for functional use through a child centered approach. The evaluation process requires a Sensory Integration certified therapist to administer.

Neurodevelopmental intervention (NDT)- is an ever evolving approach to enhancing overall motor function of individuals who have difficulty controlling their movement as a result of central nervous system deficits. This theory, as most others do, has evolved as our understanding of the brain and how motor learning works evolves. The focus is on improving motor control and motor output to improve functional skills.

Many children with motor impairments (such as cerebral palsy) do not have the opportunity to learn about themselves and their world through movement. They may develop atypical patterns of movement against gravity, and don’t get to experience body exploration, tactile, proprioceptive and vestibular inputs the way typically developing children do. A good understanding of how our bodies work to move in different ways are important for effective motor planning and use of both sides of our body in a cooperative way. These are important for learning new skills for both the gross motor and fine motor areas, as well as for functional tasks (for example: self-care areas).

Both neurodevelopmental treatment and sensory integration rely heavily on the use of tactile, vestibular and proprioceptive stimulation in accomplishing their specific goals. In the educational model, the approach most often utilized is a sensorimotor approach in both direct services as well as in consultation with class team and family.

Sensorimotor– refers to a broad spectrum of both sensory and motor difficulties, combining both sensory integrative theory and neurodevelopmental theories.

Occupational Therapists tend to have different focus of therapy depending on what model of service they are working in. A model of service helps guide the OT in developing goals and plan for therapy. As Sensory Integration intervention requires special certification for the evaluation process, and a specialized clinic, it is considered a medical model of service. The medical model focuses on rehabilitation or remediation in a clinic (private office, hospital, outpatient center) setting. The focus in an educational model of service is educational access/ adaptation/ compensatory strategies for greater success for learning needs within their educational setting.

In the book Autism, a Sensorimotor Approach to Management, consultative model is defined as: “helping the family understand their child’s behaviors and how it relates to sensory processing; helping the teacher and the family modify the environment so that it matches the child’s sensory needs; helping the child organize responses to sensory input”.

So what does sensorimotor therapy in an early intervention educational model look like? It may differ if the child is seen in a center based special education setting or a community based pre-school, head start or early learning center or daycare. Most Early Intervention center based programs have access to a room with some suspension equipment which gives the opportunity to explore more sensory integrative and neurodevelopmental strategies during direct service.

Out in the community, therapy can be limited by whatever equipment the therapist can carry as it relates to sensorimotor strategies; and if he/she has the room to use more motor based activities. These factors will usually drive the session. More often the role of the therapist in the community is consultative; helping to find toys, equipment/, and movement activities that can be incorporated into the daily class routine to help the child improve his/her attention and task focus so they can get the most out of their learning experience. The consultation is ongoing and meets the child’s ever changing needs. Often the therapist will leave a number of sensorimotor activity ideas with the class team for options for arousal or calming to maximize task focus and learning.

Acknowledgements:

Dr. A. Jean Ayres – researcher and founder of Sensory Integration Theory

Winnie Dunn, PhD, OTR, FAOTA- researcher in the area of sensory processing and creator of the Sensory Profile Questionnaire

Ruth A. Huebner, PhD, OTR- editor of Autism, a Sensorimotor Approach to Management

Colleen Schneck, ScD, OTR/l, FAOTA – contributor to Autism, a Sensorimotor Approach to Management

Anna Lassman has been an OT for 35 years, working in a variety of pediatric settings in New York, California and, for the past 18 yrs, in Pennsylvania. She has been with Easter Seals in the Philadelphia Division as the OT department head for 7 years. She has special interests working with infants and young children with feeding difficulties as well as working with children with neurological impairment. Her favorite aspect of her current job is the ability to mentor new practicing OT’s as they begin their career in the field. Anna loves the ocean and misses easy beach access, but loves the Philadelphia area.

Meet JJ

by Melanie O’Brien

Kids being kids. Sometimes it’s not always so simple. So helping children find their voices, the ability to play and engaging with with their friends and families is what we work for. Together, with families, we find ways to help the children we serve to shine. There are so many amazing children that reward us with their smiles and charm every day. JJ is is one of those stars! We are so pleased to have JJ as an Honorary Ambassador for Walk With Me this year.

Meet JJ…

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When asked to describe JJ, his mom summed it up by saying that he’s a rock star. This very social five-year-old has PVL, cerebral palsy and vision impairment. JJ has tremendous inner strength and we have to believe so much of it comes from his parents, big sister, twin brother and huge extended family. When he was ready for center-based services, he also became part of the Easter Seals family. Since he began at Easter Seals, JJ has come out of his shell even more, his motivation is increased, his words have increased and he is holding his head up better. In addition to his increased words, he will soon be using an eye gazing device to really help him find his voice. When he’s not amazing his teachers, he’s quite happy rough housing with his brother, playing catch, looking at Elmo books, strumming a guitar or even better, enjoying a bowl of ice cream. JJ certainly knows how to enjoy the finer things in life and we can’t wait to see what he does next!

 

Meet Paige

by Melanie O’Brien

There are so many amazing children we have the opportunity to serve! And when the kids are amazing, you can bet their families are too! Walk With Me is a great opportunity to meet some amazing children and their families and we are so thrilled Paige is one our honorary ambassadors this year.

Meet Paige….

Paige is one of the most fashionable five-year-olds you will ever meet! Her stylist (mom) keeps her looking good…but Paige always brings the most important accessory that truly brings the look together…her smile! Paige’s smile and sparkling eyes make every look amazing. Paige has cerebral palsy, seizure disorder, chronic lung disease and global developmental delays, which have resulted in countless surgeries and hospitalizations, but she is rarely without that smile. When it came time for her to attend school, her parents chose Easter Seals. They loved the staff and are now truly enjoying the new building, Paige loves going down the long bright hallway and looking through the windows. With the help of teachers and therapists, she has become more attentive and has increased her communication skills, perfect for a little girl who just loves to be around people! When you meet her, you will find it impossible not to fall in love with her. Her love of life, which includes theater, music, reading and even skating touches everyone around her!

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Meet Jack

by Melanie O’Brien

One of the reasons Walk With Me is such an amazing event is because it allows us to shine a spotlight on all the accomplishments of some of the children we serve. By shining a spotlight on these amazing children, we also in turn highlight all of the hard work and dedication of that child’s family, teachers, therapists and all of the other staff that work hard to maximize that child’s independence.

One of those amazing children is Jack! We are so proud of his accomplishments and we can’t wait to see him shine at the Walk!

Meet Jack…

Jack loves to laugh and the sound of his giggle is so sweet that it seems to touch your heart! He is a happy five-year-old who happens to have cortical visual impairment and cerebral palsy. Thanks to mom’s instinct, Jack was diagnosed early and began receiving services when he was four-months-old. When he started center-based services, his family chose Easter Seals, because they felt hopeful here. Since Jack has been attending Easter Seals, he started standing, taking steps in a gate trainer, drinking out of a cup and much more. When he isn’t busy impressing the staff at Easter Seals, you may likely find him listening to music! His dad is a musician who sings to him all the time. He also has a thing for Taylor Swift. Jack also has a sweet tooth and will take every opportunity to indulge it. He also loves to cuddle, especially with his grandma who he spends a lot of time with. When you think about it, it’s easy to see why Jack is such a happy little boy!

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