Who We Are banner graphic

Maddie's Client Story

 

Maddie Manglass 2013

 It’s About Quality, Not Quantity

Easter Seals RI Outpatient Client
Maddie Manglass

 

One glance at Madeleine “Maddie” Manglass and an instant smile comes to your face. Maddie is an adorable, vivacious 13-year-old who loves listening to music, playing on the computer, adaptive skiing, and making people happy.

At three months old, Maddie’s parents Carol and Todd and big sister Sophia were informed that the newest addition to their family was living with Williams Syndrome, a rare genetic syndrome caused by a micro-deletion of chromosome #7.

Williams Syndrome is characterized by developmental delays and learning disabilities, but people with the diagnosis also have highly social personalities and an intense neurologic reaction to music. Some individuals, including Maddie, even possess perfect pitch.

Maddie was immediately referred to Early Intervention services where she received occupational, physical, speech, and music therapies to help her to progress in the developmental stages that had been affected by having Williams Syndrome.

“Maddie’s development was significantly delayed and we knew she would always need high quality intense services. When she was in preschool, we learned that Maddie had a Chiari malformation of her brain which was affecting her ability to swallow and her overall balance. More recently, in 2011, we learned that Maddie had been born with a tethered spinal cord which had significantly affected Maddie’s abilities to walk. Maddie has tight heel cords which need consistent stretching.”

Through work as an Early Intervention Parent Consultant for the Rhode Island Parent Information Network (RIPIN), Carol heard about the recently-opened Pediatric Outpatient Clinic at Easter Seals RI and immediately looked into the services that Maddie could receive. Carol, Maddie, and Easter Seals Physical Therapist Pat O’Leary instantly connected.

“Pat wanted to know what our family’s priorities were,” says Carol. “She took our whole family into consideration and asked us what our goals were for Maddie, and our goals as a family. It was refreshing to be asked what kinds of activities we wanted Maddie to be able to participate in so that we could tailor the sessions around that.”

At 12-years-old, Pat began working with Maddie to strengthen her core and upper body though physical and aquatic therapies, as well as address her tight heel cords. Pat has also introduced an adaptive bicycle to Maddie who, on the first try, pedaled the bike independently.

“For me it wasn’t about the quantity of services she was receiving, but the quality of the services that made the difference,” says Carol. “Pat has always been open to finding unique ways of teaching Maddie new skills that we had been told she would not master, but Pat has proven that this is not the case. Maddie is now able to jump, ride an adaptive bike, and walk down the stairs in a reciprocal pattern – all skills needed for her to meaningfully participate in life.”

In addition to physical and aquatic therapy, Maddie also receives services from Nicole O’Malley, a Board Certified Neurologic Music Therapist who contracts with Easter Seals. “Music therapy is essential to Maddie’s learning both functional and academic skills,” says Carol. “The pathway to Maddie’s learning is through music.”

In the past, Maddie also received feeding and speech therapies from Jennifer Hoskins, SLP of Alphabet Soup. “Jenn taught Maddie how to eat and how to say her first words using the PROMPT method which utilizes touch cues to the face and lips in order to teach the child how to speak.” Carol points out that she is impressed with Easter Seals’ willingness to collaborate with other service providers, such as Jennifer and Nicole, in order to ensure that individuals with disabilities are receiving the specialized services they need in order to be successful.

Due to the overwhelming support Easter Seals has shown the Manglass family, they wanted to do something to give back. Carol joined the Board of Directors in 2012 as a parent representative. “It is my hope that I can spread the word about the high quality of services Easter Seals is providing and to assist Easter Seals in planning to address any gaps in services that the community needs.”

For more information about the Outpatient program click here.

Powered by Blackbaud
nonprofit software