Paul at Seashore House early on in his recovery.
It was 2005 when the shy kindergartner went to a teacher complaining of a pain in his right eye. He had been at lunch when his arm drooped and he briefly stopped talking to his friends. While in the nurse’s office, he began vomiting along with his pain.
The school nurse thought it might be meningitis; Kathy thought ear infection since Paul had been experiencing cold symptoms the night before. Paul Sr. thought it might be something more serious, and called for an ambulance.
It turned out that somewhere between lunch and the nurse’s office, Paul had experienced a hemorrhagic stroke caused by an arteriovenous malformation (AVM), a tangled group of abnormally formed blood vessels that had burst, bleeding into Paul’s brain.
Neurosurgeons at a hospital near them performed a craniotomy, a surgical procedure where part of the skull is removed in order to relieve pressure on the brain. For four months, Paul wore a helmet to protect his head until his skull could be closed.
Not long after his second surgery, Paul moved to continue his road to recovery at The Children’s Hospital of Philadelphia’s Seashore House, a comprehensive rehabilitation center. There, he worked tirelessly with a team of physical and occupational therapists, speech-language pathologists and rehab physicians, along with many other team members who were there to support him along his journey.
One step at a time
Despite challenges along the way, Paul has made vast improvements over his 11 years of rehabilitation therapy and follow-up with the Pediatric Stroke Program team at CHOP. In addition to his rehab team, a multidisciplinary group of neurologists, psychologists, neuropsychologists, nurses, child life specialists, social workers, and an education coordinator have been with him every step of the way to help him face any obstacle in his path.
At 16, Paul continues to experience persistent weakness in his right arm and cognitive problems that interfere with his ability to organize and plan. But those obstacles aren’t stopping him from celebrating achievements and looking ahead to the next milestone.
“We all still talk about the day Paul began to walk down CHOP’s walkway. He was elated,” says Kathy, remembering the day Paul no longer needed his wheelchair.
After initially losing his speech following the stroke, Paul also made great strides in regaining his verbal and reading comprehension, and worked extremely hard to become an avid reader by the time he was in ninth grade.
Involved in the Boy Scouts since first grade, Paul is currently working on his project to become an Eagle Scout. He has also been playing disabled sled hockey with the Wings of Steel in Voorhees, NJ, for over seven years.
Paul is now looking forward to college. “It may not be the same type of college his older sister Julia goes to, but it will be a college that fits his needs. We’re all so excited,” says Kathy.
Fueling progress in the classroom
In addition to his continuous therapy at CHOP, there is another critical factor that has fueled Paul’s progress: his parents' advocacy work at his school.
After Paul’s stroke, Kathy ultimately became a school aide herself, where she learned the inner workings of the school and fine-tuned her advocacy work for Paul and other students.
During her time spent as an aide for other students and an advocate for Paul, Kathy has learned many valuable lessons. Here, she shares some key takeaways for other families to keep in mind as they advocate for their children in a school setting:
Request a meeting with all of the teachers. The Individualized Education Plan (IEP) can be too vague. Conversations to fill in the details can give your child’s teachers a clearer picture of your child’s unique needs. It is important to share your child’s medical history, challenges and strengths with their educational team.
Don’t be afraid to ask for more. Know when to step back and when to push for something that can make all the difference. While every school district is different, you know your child best and what helps him to learn optimally. Let this be your guiding force.
Ask whether an assistive technology evaluation is appropriate. This takes time, so plan accordingly. First, you have to request it; then they need to schedule it and later write up the results. A meeting is then scheduled to discuss the findings. Remember you can request a consultation for a reevaluation if changes are needed later on.
Do what you can to create a picture of your child’s reality. Find ways to help the teacher(s) envision your child’s challenges and then figure out the best solutions. For instance, ask the teachers to try writing with their opposite hand, to help them understand why writing is such a difficult task for your child. This can help your child’s teachers make adjustments to perhaps shift attention from note-taking and keep the focus on more important education goals.
Be diligent with your child’s therapy outside of school when appropriate.
Get a proper neuropsychological evaluation to accurately guide your child’s education needs. We meet with CHOP's Pediatric Stroke Program team twice a year, where neuropsychologist Lauren Krivitzky, PhD, evaluates Paul’s progress and helps plan his care. Elisa Olson, the education coordinator, has become our new best friend. She made herself available for every meeting. To this day, she remains involved with Paul's education planning.
Know the basics of available modifications. For example, you can work with the school to get your child extended time to finish projects, or allow for “chunking” work into smaller pieces using a bigger font. In addition to standard accommodations, make sure you work with your child’s teacher to design more creative strategies geared toward your child’s unique needs.
Teach your children to advocate for themselves. Show your child the way through your own actions. Setting the example with your own advocacy efforts and confidence will help instill that same mentality in your child so that he can eventually advocate for himself. Paul now goes in and tells his teachers: This is the way I learn.
Originally published May 2016