AAPS: Tappan Middle School Student Champions Cerebral Palsy Awareness

Story, photos and video by Jo Mathis/AAPS District News Editor

Last spring when Ptolemy Weathersby heard about World Down Syndrome Day, he wondered: Why isn’t there a similar day for Cerebral Palsy? Come to find out, there was. It’s just that nobody seemed to be making a big deal about it.

That’s why Ptolemy (the “p” is silent) and his physical therapist, Kathy Gaines, are encouraging his schoolmates at Tappan Middle School to wear green on Monday, the day after World Cerebral Palsy Day. They also put together an informational slideshow about CP which students watched in their advisory classes.

“Uniquely CP”: Ptolemy’s Journey

As World Cerebral Palsy Day approaches, Ptolemy’s message aligns perfectly with this year’s global theme: “Uniquely CP.” He embodies this theme through his determination to achieve his goals—or as he puts it “keep on the path.”

He may speak just a bit more slowly than his classmates, but Ptolemy is articulate and more than a little proud of his vocabulary. Noting that his journey hasn’t been easy—he’s undergone multiple surgeries, procedures, and therapies—Ptolemy approaches his life with a matter-of-fact perspective.

“It’s a lot to go through, but it’s a part of me,” he says.

Ptolemy, 13, weighed two pounds when he was born at 26 weeks, and spent the first four months of his life in the intensive care unit.

His involvement in choir, advocacy for those with CP, and rooting for his beloved Detroit Lions not only enriches his life but also—he hopes—broadens the public’s perceptions about the capabilities of people with Cerebral Palsy.

“I want them to know that Cerebral Palsy matters,” Ptolemy says, when asked why he wants to bring attention to the day. “There’s different variations of CP, so CP is much different across everyone, and it should be respected.”

He describes instances where respect has been lacking, particularly in the school hallways.

“In the hallway, other students sometimes have pushed over me or tried to cut in front of me and get in my way,” he explains. “A way that they could respect me was at least say ‘Excuse me’, or maybe just wait their turn.”

He emphasizes the importance of seeing beyond the disability.

“Sometimes they treat me like the kid in the wheelchair or the kid with a disability. Sometimes I just want to be treated like a regular person because I am. And in fact, anybody that has cerebral palsy should be treated like a regular person because they are.”

“The truth is people should know I’m just like any other person. Treat me like it. It’s easy to talk to me. I have many friends, and they have helped me, too. Many friends have followed me from elementary school, and they’re helpful. They really think about me. They’ll say, `Do you need help getting this out? Do you need help with anything?’ They’re just trying to show support and give help to a person in need and I love that.”

A Family’s Perspective

As Ptolemy champions awareness for World Cerebral Palsy Day, his parents offer unique perspectives that paint a fuller picture of life with CP and the confident their son has become.

Tim Weathersby, Ptolemy’s father, emphasizes the importance of seeing beyond the disability. “The thing that I’d like most people to know about PJ is that he’s just a regular smart, funny, talkative kid, who also is irritating, and annoying,” he says. “A typical teenager.”

His insights into cerebral palsy reveal the complex nature of the condition. “CP is different for everyone that has it,” he explains. “Some muscles are too tight, some are too loose, some combined both tight and loose.”

“It’s varying degrees of tension, flexibility, strength, and weaknesses. It’s tough. It’s rough.”

But he concludes with two words that sum up the family’s journey: “It’s love.”

Dr. Liza Weathersby, M.D., Ptolemy’s mother, says she wants people to know that Ptolemy is very loving, caring, and engaging. “He’s overcome many obstacles just for basic daily living,” she says. “He has been in therapies all his life, physical therapy, occupational therapy, speech therapy, and has had numerous surgeries.”

What stands out most to Dr. Weathersby is Ptolemy’s resilience and attitude. “I am very proud of him for several reasons, but most of all is that he doesn’t give up and his outlook is very positive, and he takes risks,” she says.

Dr. Weathersby also offers practical advice for interacting with individuals with disabilities. “I want people to know that they should talk to people with disabilities, and be patient with them,” she says, noting that when people ask Ptolemy a question, it may take longer than they expect for him to process the question.

Ptolemy says his parents and extended family have been incredibly supportive, loving and caring his entire life, and loves nothing more than hanging out with them.

“It’s really great how much my parents have helped,” he says. “It can be frustrating for both me and my parents but we just have to know that there is a goal. And we can accomplish it if we work hard enough.”

Looking Ahead: Independence and Gratitude

Ptolemy has attended Westerman. Preschool, Bryant and Pattengill, Logan, and now Tappan. Formerly in self-contained classrooms, he is happy now to attend general education classes with more of his peers, with the assistance of his “remarkable; truly remarkable” teaching assistant Krista Barry who has been at his side during the school day for seven years.

“I thank my doctors for recommending this power chair and my parents for helping me to get it because this helps me,” says Ptolemy, who plans to become a software engineer one day. “I have reached the point where I can keep going in life; have new experiences; new outcomes; new adventures, and I’m proud of myself for doing that.”

As Ptolemy looks forward to Pioneer High School next year, he remains optimistic: “It’s going to be different and it’s going to be scary. But even with my CP, see this goes back to the goal. I have a path for my life, and I’m going to try to continue to stay on that path.”

“My family will probably say this about me, and people in the world: I am very sweet-hearted,” he says.

And for that, he’s grateful to all his teachers and support staff at AAPS who have helped him along the way, as well as evolving technology that continues to help him thrive.

AAPS Physical Therapist Kathy Gaines met Ptolemy when he started preschool at Westerman in the fall of 2014, and with the exception of a few years in elementary school, she has been his school physical therapist ever since.

“I admire so many things about Ptolemy, but especially his positive attitude, and his desire to set goals for himself, and to achieve them,” she says. “He recognizes that things might be more challenging for him, but never lets that stop him from finding ways to do what he wants to do. He is also truly thoughtful and kind.” “
She says Ptolemy considers other people’s feelings and isn’t afraid to express his own feelings, which are most often happiness and gratitude.

“It’s amazing to consider how far he has come, and his confidence and independence have taken off the last two years at Tappan,” she says, “and I can’t wait to see how far he will go.”

Gaines notes that about 23 AAPS students have CP, but that includes only those who receive or have received PT. There are likely others with mild CP who do not receive PT. The national average is 3 per 1,000 according to most of the CP data sites.

Ptolemy wants to make it clear that he feels “truly blessed.”

“I have had all this happen to me, but still I have a good heart,” he says. “It’s hard. But I make it through. Out of all this, it has been a journey. I want you to know that it has been a journey, and I appreciate the help I’ve been given throughout the journey.”

October 6th is World Cerebral Palsy Day!