A Shared Vision: Partnering with Therapists

Summer 2016, trying out an adaptive bike

Therapy is a necessary part of our lives as parents of children with special needs, and sometimes it can feel like a chore.  When therapy goes badly, it can be disruptive, at best. We have experienced therapists who seemed unsure of themselves and didn’t understand the importance of partnership. We had a therapist tell us we didn’t need to push our son to do things that were beyond his developmental level. Then there was the therapist who had difficulty with cultural competency and made offensive remarks. Each of these therapists has given us an appreciation for those who get it right. The right therapist is an advocate and a visionary who can see past today’s limitations and into a brighter future.

When it goes well, therapy becomes a partnership and a circle of support for your child. Richie’s best therapists have listened to our goals and plans for him and been his cheerleaders. They have helped him soar past previous plateaus and set new, more challenging goals. Most importantly, they have treated me as an equal. They have respected my knowledge and helped me to learn more about Richie. They have understood the battle Richie is fighting against CFTD myopathy, and they give us new weapons to defeat it. They troubleshoot setbacks and help us work around obstacles.

A Learning Experience

Therapy has been full of Eureka! moments for us. We first discovered Richie’s sensory processing disorder through therapy, when he showed tremendous distress over certain noises and textures. We also discovered how perceptive a one-year-old Richie was when he began faking exhaustion to try to shorten his therapy sessions, and then perking up and giggling as the therapist packed up to leave. We learned that Richie does things in his own time by watching him refuse to do a task and then do it quickly when the therapist turned her back. We learned that Richie loves novelty, and keeping him engaged requires thoughtful effort. Therapy has given us an additional way to get to know Richie.

Therapists have a window to the miracles our children have inside them. They share our journeys. At ProMedica Toledo Children’s Hospital, Teresa Lutz, Richie’s NICU physical therapist, showed me, gently and carefully, how to loosen his tight joints and position him for better breathing when he was just days old. As a first-time mom, I was terrified of his fragility, and her caring and kind manner eased some of my anxiety. Karen Ruhe, Richie’s first home physical therapist, began working with him when he was four weeks old, and she saw him through learning to sit, getting a stander and learning to drive his first motorized chair. She helped me to set challenging goals for Richie, and she never let him get away with doing less than he was capable of doing.

Therapy is Personal

Richie’s occupational therapists have helped him to overcome many of the challenges of his condition, including contractures and low mobility. Sherron Williams, Richie’s first occupational therapist, taught me to use kinesiotape to increase the movement of his joints and to encourage him to raise his head. Amanda Baron helped him to use his fingers more precisely and sit independently, and she gave me a wealth of knowledge. When we moved from Toledo to Cleveland last year, we were lucky to find Marci Jacobs, who understands Richie’s intellectual gifts and meticulously finds ways to help him reach his potential.

Richie’s speech therapists have helped him to close the gap in his communication skills. Because he had a trach, he was basically silent until he was able to use a speaking valve at age two. Rachael O’Brien helped us to learn Richie’s ways of communicating with us when he was an infant. His therapist, Katie Bochi, supported our use of sign language and taught us about how to work through his dysarthria; she was willing to fall on the floor and act frightened when Richie accurately produced the word “Boo”! Jackie Vitale, Richie’s current speech therapist, helped us to get an adaptive communication (AAC) device and continues to share our joy when Richie’s speech and communication improve in leaps and bounds or even in baby steps.

Richie’s therapists are closely tied to his story and to ours. Their involvement is personal, and the love they have for their work and for Richie’s future is genuine. They know how far he has come.

Seeing the Miracle

Looking back over the years, Richie has reached so many milestones. At birth, he was only able to move his fingertips and eyes, and now, he scoots, rolls, and sits. He was silent for two years, but now, he chats and recites his favorite movies, and his speech, while still greatly delayed, is improving. In the past year, Richie was decannulated, he took his first steps with a gait trainer, he learned to drive his motorized wheelchair (almost) without incident, and he overcame some of his most sensitive sensory issues. He’s not even five, and his life has been so full of triumphs that we never knew, but always hoped, he would reach. When the therapist sees what we see in our children, magic can happen. The best therapists see Richie the way we do, as pure potential.

This article appears in the July 2016 Therapies issue of Complex Child magazine.

Photo credit: Shutterstock.com

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Charisse Montgomery is the author of the Super Safe Kids series of books and safety tools. These tools engage children, parents, and their families in improving safety and advocacy in the hospital, the community and the home. A former educator, Charisse Montgomery has earned bachelor's and master's degrees in English, along with a master's degree in Educational Psychology, with research focused on informing and empowering parents of medically fragile children. She completed a graduate certificate in Patient Advocacy and serves on the Board at Rainbow Babies & Children's Hospital.

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