The J.P. Story: Uncharted waters

Dad’s note: In honor of J.P.’s 12th birthday, I began writing “The J.P. Story,” which looks back at our journey through birth and into childhood. I hope you’ve enjoyed it. The 11th chapter looks at the changes having a teenager has brought to our lives. To start at the beginning of the story, click here.

When J.P. turned 13 years old, it was a milestone and reason to celebrate. While J.P. was considered by most to be a miracle baby, his medical challenges had the doctors warning us that he would likely never become a teenager.

We were entering uncharted waters with our boy, and we weren’t alone. Studies have shown about 750,000 children with special needs in the United States transition from pediatric to adult care every year, and while J.P. is still a few years away from making the move, health care systems across the country are struggling to find care for these patients as they reach adulthood.

“Finding adult primary and specialty care providers for youth with chronic conditions has been a challenge for pediatricians, youth and families,” said Wake Forest Baptist Health Dr. Paul J. Sagerman, who co-chaired a study on the topic.

“Travelers are always discoverers, especially those who travel by air. There are no signposts in the sky to show a man has passed that way before. There are no channels marked. The flier breaks each second into new uncharted seas.”

Anne Morrow Lindbergh

While the transition to adult care is always on my mind, there was a more immediate concern to deal with: J.P. was growing, and it was becoming more difficult for one person to care for him alone.

Our Home and Community-Based Services waiver through Medicaid allowed us to add a lift system in J.P.’s bedroom and our family room in 2015, but as helpful as the lift is, there are still times every day when he needs to maneuvered on the couch, especially for diaper changes. We’ve also been lucky enough to have nurses from Aveanna Healthcare in our home, some of whom have become more like family. The extra hands can be a big help as he’s grown.

When it comes to school, J.P. remains enrolled in Seminole County Public Schools and his pediatrician believes the Hospital-Homebound Program is best for him. That means his teachers and therapists come to our home each week for one-on-one education. He is currently enrolled in high school.

Despite the school changes, his educational team has remained largely intact, and he seems to enjoy the time with his teachers. He still loves books, and gets pretty decent grades. He can remain in school until he turns 22, and then we’ll need to determine some next steps for him.

There are two programs that I’m keeping my eye on. an adult program through the Conductive Education Center of Orlando, and Community Art Connection at Northland Church. Those are decisions for a different day (or year).

For now, it’s important to continue to enjoy J.P. for the teenager he has become. His smile remains precious, his personality engaging and his health stable. He’s come a long way for a kid who was never supposed to make it to high school.

Continue to Chapter 12: Problems with pain