Back to School with Chronic Pain: One Family’s Story of Resilience
This is a time of excitement—school is starting, and there is a sense of new beginnings. That is, in most homes. In our house, this was a time to worry about how my daughter would “catch up.” Will she be able to tolerate all that being in a school setting entails? Will the additional stress cause a flare-up? Now that I am seven years beyond all these questions, I can honestly say it will be okay. It will be a winding road, but you’ll get there and celebrate many triumphs along the way.
In November of 7th grade, my daughter came home with an inexplicable pain in her left arm. We were lucky because, by early December, she had a diagnosis—CRPS. She started physical, occupational, and psychological therapy early in the new year, but she never returned to 7th grade. She spent the school year going to appointments and sitting on the couch. I went on intermittent family leave to get through all the appointments.
At the end of the school year, I couldn’t imagine another year like that and started looking for more support. There was a partial hospitalization program at Boston Children’s Hospital. She got on the waiting list and started the program in mid-September of 8th grade. This was the first time I was able to relax. My child was in good hands eight hours a day, five days a week, and I could try to get some rest.
In the 6th week of the program, it was time to plan what was next. Her care team was very involved in communicating with her public school and forming a written plan for reintegrating into the school day. Knowing my child, and from everything I had learned about chronic pain that year, I knew that pacing was crucial. She couldn’t go from no school to a full school day. It would be a recipe for disaster. And this was all pre-pandemic, so online schooling wasn’t really considered—and maybe that was good.
So, we all came up with a plan. Making this decision with the child, the family, the care team, and the school is needed for any hope of success because it takes a village. Maggie started attending school in November, with one academic class and one more hour as a teacher’s aide on the school grounds. She came up with the names of some teachers she was comfortable with, and we asked whether she could be their aide. Thankfully, they agreed. So, she went to school every morning at 8 a.m., and by 10 a.m., she was home.
The next step was adding another class to her workload. Tentatively, we agreed to try in a month, after seeing whether she was okay with adding to her time at school. It went pretty well, and she was comfortable adding another class in December. She successfully finished the calendar year, being in school three hours per day.
But three hours is not close to being a full school day. I was worried about her having too much schoolwork and being able to catch up with missed schoolwork, so before adding a new class, I wanted her to extend her time in school by another hour. It wasn’t as simple as I thought it would be. School officials always have their own ideas, but I insisted on her spending a study period in the library. It was an academic setting, and it was quiet. Much, much better than being in the school office and observing all the good and bad it involves. Again, success! And the librarian built a very lovely relationship with her.
There was a whole semester of the school year to go. But at this point, there was also a whole semester of work to catch up on, whatever class we chose for her to take. The holes in her learning were evident throughout high school, but that’s why we do “just in time” remediation. And it’s not just our children who need it; many who have not missed that much instruction do, too.
We stopped adding hours at school. Five hours was close enough to six, and the goal was to end the school year successfully. She had a 504 plan and could have a continuing pass to leave the classroom when needed. She also had a room in the administration building where she could go for quiet time if she needed it. She had extra time to finish assignments and was excused for absences without questioning. She used most of her accommodations, but not extensively, and she finished the school year successfully.
The following year was another new start—high school! She started with all her academic classes but did not take PE. Her pain was still at a six or even a seven on some days. This was 2019 and she not only did well, but joined the improv group and made friends. It was an unbelievable success, despite the pain and, of course, the closing of schools in March of 2020.
My daughter is now about to start her third year at university. She spent the summer interning across the country. Does she still have pain? Yes, sometimes at a low level, but it does not stop her from doing what she wants. The pain just is. I cannot be prouder and more amazed at all she has accomplished in the last seven years.
So, we may not feel the excitement of a new beginning at the start of every school year. There is always trepidation—what will this year bring? But we can have confidence that our children’s strength will emerge and they, and we, will come out on the other side with gratefulness in our hearts and pride in their accomplishments, however long that may take.
