A lot of parents I know raising children who experience disabilities look with anxiety to the summer months. What are these kids going to do for those two-and-a-half months? For some, extended school year is an option that they may choose to maintain consistency and routine. Others explore camp options that are geared for children with disabilities where staff is specially trained. For our family, we look to the summer months the same way we did when we were kids: with excitement of being able to sleep in late, drive less, and spend more time together as a family making wonderful memories.
Part of my own childhood memories include playing with neighbors in the front yard until our parents called us in at dark. It’s no wonder that my husband and I would want such sweet memories for our son Dennis, who experiences Down syndrome. Therefore, when Dennis was 5, I started exploring recreational activities in our community, and that’s when I came across the YMCA of Columbia-Willamette. YMCA has a philosophy that everyone plays, regardless of ability, and this really resonated with our family.
Back when Dennis was transitioning to kindergarten, we created a person-centered profile for him that highlighted our vision that he be fully included in his community. We have always sought that goal for him, and it was only natural for our family that he take part in recreational activities with his peers. So I signed him up for soccer, and made a plan. This plan included 1) setting up supports for him so that staff could get to know him, and 2) sharing strategies that work best for engaging him.
The easy part was that I already had a one-page profile, so I emailed the new coach before soccer started to introduce myself. We couldn’t meet in person, so I sent him the one-page profile, explained that Dennis has a disability, and that we were happy to answer any questions or provide additional information on Dennis.
The hard part was allowing Dennis the “dignity of risk.” In the disability community, this means respecting Dennis’ autonomy and self-determination to make choices for himself. I knew I needed to let him experience soccer camp with his peers, even if that meant he might experience discomfort or not be as successful as other kids. But not only that: I needed to extend that same dignity of risk to myself. As his mom, I was protective of him, especially in light of the tough challenges we’d faced that school year. I had to raise my own expectations of my own community; that if I gave them the opportunity, they would include him in his community. I had to trust in humanity. For me, it was a leap of faith, and dropping him off at that first soccer practice was undoubtedly one of the hardest things I had done in his life.
Thankfully, we were delighted that the coach and his staff used the one-page profile I’d provided ahead of time, and they opted to use peers as supports, since Dennis did so well with peer modeling. Best of all, because the YMCA believes so strongly in including all children, Dennis got equal time on the field with everyone else, and made several friends.
We feel very fortunate that the YMCA is available to us, especially since there is no organized parks and recreation program where we live. That being said, some cities have parks and recreation departments that include inclusion support. For example, Portland Parks and Recreation’s website states, “Inclusion Services provides accommodations for people with disabilities/special needs to allow everyone to take part in PP&R classes and activities that are in their chronological age group. Activities are done in an inclusive setting.” The City of Bend’s approach is to provide reasonable accommodations which are “are individualized techniques and resources used to enhance program participation without fundamentally altering the program.”
Even if your community doesn’t offer inclusion support, you can still find creative ways to support your child. We typically pay a neighbor or my niece to shadow Dennis at camp. That way, a person who knows Dennis really well can help him communicate his needs better, navigate the daily routine, and lend a helpful hand to the group when needed. This strategy has worked really well for our family! Other families I know come up with cost-sharing solutions, like hiring a support person for two children in the same camp, and splitting it. Maybe you live near a university – why not hire a student? Even better, hire one who is studying to become a SLP or OT so they can have fun while gaining new professional skills! One family I know would hire their child’s educational assistant in the summer, when he was not working in the school. By taking advantage of low-cost community activities like concerts in the park, U-pick farms, kids’ movies, and other activities, your child can experience what summer is all about without you incurring significant cost.
Dennis is now nine, and has friends with and without disabilities, but he is always included in his community. We build in supports wherever we need them to be so he can continue to make sweet summer memories year after year.
Christy Reese is FACT’s Director of Operations, and a parent of a child with a developmental disability who attended a FACT parent meeting when her son was just a baby. “That first meeting, hearing Kathie Snow and connecting with other parents, was life-changing.” She is a 2008 PIP graduate, and serves on the Seniors and People with Disabilities [SPD] Children Services Advisory Group.