Summer is soon over and the anticipation of the upcoming school year is here. It’s time for children to say goodbye to bonfires and swimming and hello to schedules, desks and books. It is a time for new beginnings and endless possibilities for most children. For my two healthy children, it is just that. But for my son Gavin, who was diagnosed with a brain tumor near the end of his kindergarten year, back to school can be a time of worry and uncertainty.
For the thousands of children in the U.S. living with a brain tumor or cancer, going back to school is bittersweet. They crave the normalcy that ensues when a new school year begins, yet must delicately balance being a child while going through treatment or dealing with after effects of it.
For the thousands of children in the U.S. living with a brain tumor or cancer, going back to school is bittersweet.
At the start of Gavin’s journey, I had yet to realize all that comes with treatment for a brain tumor. I naively imagined that once he beat the tumor, he could then carry on with his life as he knew it. Sadly, this isn’t the case for most childhood survivors. Many of the treatments used to treat pediatric cancer have long-term effects such as mental fatigue, physical and cognitive deficits, or trouble with attention, memory and speed.
During first grade, Gavin received homebound instruction (where a licensed teacher helps maintain a child’s progress) when he was not in the hospital. When finally returning to full-time school, he had missed 17 months of consistent education. Any healthy child would fall behind missing that much school. In addition to that, Gavin endured chemotherapy, five brain surgeries, multiple procedures, surgeries and medical complications. During all of this, our goal was survival. When his disease was finally under control, we soon realized that going back to his life as he knew it was not going to be an easy task.
Transitioning Back to School
Parents like myself are faced with the reality that while we helped our children fight to live, they missed part of their childhood. Education, activities, sports and social interactions aren’t easy to experience while at the hospital. Back-to-school for us is so much more than buying a few new outfits and getting the necessary supplies. It now includes meetings with the school, evaluations, discussions about special services and emotionally preparing our children to re-enter a very different world than what they have experienced during treatment.
Communication is key between parents and schools. For the upcoming school year, I have been preparing for what I foresee being areas of struggle for Gavin. I am acquiring updated evaluations from neurology, physical therapy, neuropsychology and vision specialists so that we have the most current update on Gavin’s needs. Being knowledgeable and proactive has helped tremendously.
I’ve learned to utilize every resource available: I depended on PACER and the American Childhood Cancer Association/American Brain Tumor Association. These resources can alleviate feelings of worry and uncertainty and allow you to advocate for your child. If you can, find a neuropsychologist who you trust and who can be an ally in helping others understand your child’s unique situation. Gavin has an amazing neuropsychologist who supports him and his academics and encourages him on how far he has come.
A Cause for Celebration
Despite all these challenges, Gavin is excited to begin third grade! I consider this a cause for celebration. When I compare Gavin to his siblings, or even his previous self, it is easy to be discouraged and imagine how much easier things could be for him. However, at the same time, going through this life-changing journey has altered my perspective. I could have lost him, but he is here, starting third grade, and that is simply a miracle.
Photo credit: Scott Streble
How do you help your child ease back into the school year? Add your comments in the comment section below.