Teachers Offer Their Perspectives on PH

For several hours a day, your child’s teacher is his or her caregiver. Having a strong relationship with teachers can play a significant role in your child’s opportunity to be a happy and successful student.

This past summer, the PH Professional Network (PHPN) Education Committee worked with more than 30 teachers and our Parents Advisory Board to update and improve our School Resource Guide. This Guide offers an overview of PH, PH treatments and related side effects, and it offers forms to organize your child’s specific medical needs. As part of this process, PHA spoke to teachers about the challenges they perceived for both teacher and student when the student has PH. Here is what we heard:

Communication. Every teacher we spoke with emphasized the importance of proactive, ongoing and open communication between parents and teachers. “The communication piece is the most critical part,” shares Katie Dempsey, who teaches seventh and eighth grade in Washington state. “It’s important to know that they are having a bad day physically or mentally, so we can all be on the same page and work together.”

“It’s really important to be proactive before the school year starts,” adds Troy Rood, a fifth and sixth grade physical education teacher in Iowa. “Request meetings with the administrators and teachers. We do modifications for kids all the time; this shouldn’t be any different.”

Hand-in-hand with communication is trust on both sides. “My student with PH trusted that I would modify the activities as best I could, and I trusted that she would tell me when she wasn’t feeling well. Trust is key,” Troy tells us.

Teachers also mentioned that written materials about PH and in-person demonstrations of medical equipment are helpful.

Fitting In. Several teachers watched PH kids struggling to feel normal. “‘Normal’ is a speed on a washing machine,” argues Jayne Tuerff, a second grade teacher in Tennessee. Her student, Sarah, was diagnosed with PH mid-year. “Nobody is ‘normal’ and every child has his or her own set of challenges. Having Sarah in my class reminded me to love each and every child where he or she is. She just wanted to be treated like a regular kid and have regular experiences. I tried to keep perspective that she was the same child as before her diagnosis and deserved to be treated that way.”

Rebecca Flowers, a preschool teacher in New Jersey, agrees: “At first I was concerned about [my student’s] pump. Once I was comfortable with that, it was fine. I treated her like any other kid. It’s hard for a kid when people can’t see past the pump and the PH.”

Keeping Up. Teachers also spoke about the stress for older students who miss school and fall behind on schoolwork. “Staying caught up is definitely a challenge,” Katie says. “At that age [fifth – sixth grade], when a kid misses a lot of school, it can be emotionally stressful.”

Be Persistent. What if you're in a school that isn't listening? “Continue to provide information and keep the door open, even if people aren’t as responsive as you want them to be,” recommends Katie, the Washington middle school teacher. “Parents are their child’s best advocates. Education is the pathway to success in the future. Never give up advocating for whatever allows your child success in the educational arena. But if your child is in an environment where you’ve tried and tried and it just doesn’t work, maybe it’s time to make a change — because with a PH kid, as much or more than with other kids, it’s important to be on the same page.”

Jayne from Tennessee adds, “It’s important, as educators, that we understand each individual child. Sometimes it probably feels like it falls on deaf ears, but you have to keep plugging away for your child. Every child deserves the opportunity to be in school and learn in the classroom. I feel, as an educator, that’s my gift — to work with all children. I would have lost out on so much by not having Sarah in my class. She taught me more than I could ever have taught her in a year.”

This article first appeared in the Fall 2013 edition of Pathlight.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.