Our story: The Importance of Inclusive Summer Camps
Our oldest son, Cooper is 12 years old and has a rare chromosome abnormality and Cerebral Palsy. He has global delays, is nonverbal, and uses a walker to walk. He is smart, stubborn, full of joy, and almost never turns down an opportunity for a hug. After he was born, we were told that they couldn’t find anyone in the world with the same chromosome abnormality, and therefore, doctors couldn’t really tell us what to expect other than developmental delays. We were not at all prepared for all the obstacles that we would face. The first few years were a blur of medical appointments, therapy, and surgeries. Despite the many challenges along the way, my husband and I have always been committed to helping Cooper thrive in a world that isn’t exactly made for him.
Cooper loves to be around other kids, learn new things, and engage in fun activities. Like many kids with disabilities, he relies on routine and structure to get through his days. This is how he knows what to expect, which makes him feel safe in the world. Every morning, he looks at my feet while he eats breakfast. If I am wearing shoes, he knows he is going to school. If my feet are bare, he knows it’s a weekend. If it’s a weekend, he points to my shoes and hopes I’ll go put them on, because he wants to go to school. In the past we have done summers without summer camp, and we noticed how much he missed the routine and watched him regress. His skills and behavior quickly declined and, honestly, it was hard for me to keep him engaged and entertained for an entire summer. Cooper requires constant supervision, which is challenging with his two younger siblings running around. It quickly became apparent that a whole summer was too long for him to go without the structure and stimulation that his school provides.
Our Solution to the Summer Camp Dilemma
Many parents work, or like me, have several children to care for during the summer. A child with a disability usually needs more supervision and medical care than typical kids, and all kids need a lot of attention. We can find ourselves exhausted and on the verge of burnout if we don’t have support during the summer. Truthfully, most of us are already there, even with support. Caretakers are often in a state of emotional, mental, and physical exhaustion.
When we were on a search for the right summer camp for Cooper, we were looking for some core factors.
- Ensuring they operate throughout the whole summer, so I don’t have to search for several camps to keep him busy.
- Making sure they were well-staffed with a 1:1 student-to-staff ratio. This ensures he stays focused, able to participate in all activities and, most importantly, safe.
- We wanted them to work on goals specific to each child, while keeping things fun and entertaining for the kids.
We are lucky to have found that at the Conductive Education Center of Orlando (CECO; www.ceco.org). It happens to be where he attends school during the year. They open summer camp up to all kids with motor disabilities, not just kids who attend during the school year. People travel from all over the country and even other countries to attend. We are grateful to live close. He loves the structure, challenge, and fun that this summer camp provides. You will often find Cooper loudly protesting at dismissal, which is always a good feeling for a parent of a nonverbal child.
The Call for More: Advocating for Increased Access and Supportive Camp Options
Over the years, we have figured out the summer routine that works best for us. Cooper needs summer camp for the whole summer, while his siblings like to do a few weeklong camps with time to relax in between. My hope is to see more options for kids with disabilities in the future. We need more camps that can provide enough staff to responsibly care for the kids. I would also love to see more summer camp scholarships for those in need. Every child with disabilities should have the opportunity to go to summer camp. Every caretaker, already on the brink of burnout, should have the opportunity to send their child to summer camp. I am hopeful that we will see these options grow in the future, as I already see so many new and exciting opportunities for people with disabilities and their families on the horizon.
ABOUT THE AUTHOR:
Melissa Smith lives in Orlando, Florida with her husband and three kids. She is a stay-at-home parent and caretaker of a child with a disability. She is passionate about balancing family life and personal growth. She loves to write, paint, read, and listen to podcasts in her free time.
Read the article here.