My almost-five-year-old daughter Syona has had very limited exposure to typically developing kids. She’s our first and only child and has cerebral palsy. Most of her peer-to-peer interactions have been with other kids with special needs. While I love the diversity in Syona’s circle of friends, I realize the importance of exposing her to “typically developing” kids. Our summer planning started in late winter. We knew camp was an important solution to our family’s challenges. We learned a few things along the way:
1. Camp is well-orchestrated chaos. Pickups, drop-offs and extended care are all a juggling act. In our family, we’re fortunate that we can ask our extended family to step in and help out when in a bind. Syona loves routine, and she’s used to working with the same people. However, that’s not what it’s like at camp. The individuals who supported her changed daily—which was tough for her, but it made her learn to be more flexible. It also meant she made friends with an even wider group of people, which is a huge bonus.
2. There is no break from making school lunches. Camp lunches are exactly like school lunches, only your kid eats a lot more food. In our case, we stuck with our tried-and-true school lunches and threw in a little extra as Syona’s appetite increased. There are no shortcuts, especially when your kid refuses to participate in BBQ Day.
3. Camp is gross—and that’s OK. Confession: one of my summer highlights was throwing Syona’s lunchbag in the trash on the last day of camp. I never knew my daughter could get so sticky—and stinky!—during a day of supervised fun. But all that gross seemed worth it when Syona came home to tell me how much fun she had.
4. Asking for help is a skill. One of the greatest lessons this journey has taught me (and continues to teach me) is how to ask for help when we need it. This is a skill Syona is just starting to learn. At camp, people didn’t anticipate her needs, so she had to ask for help. Sometimes, Syona’s cerebral palsy makes it hard to understand her speech. At camp, she had to figure out how to get people to understand her when she couldn’t articulate her words herself. Within two months of camp, she’d figured out how to replace certain words with synonyms when people didn’t understand her.
5. Camp requires a lot of trust. Entrusting Syona to someone who only looks 10 years older than my daughter was really tough. I wanted to grill them about their training and experience. But instead, I shared information about Syona and her equipment and trusted that they would do their best. And they did. Syona learned so much from the youth workers. She learned that caregivers aren’t always “mommy and daddy” figures and that people are generally kind, supportive and helpful.
Camp for kids with special needs can be very expensive (equivalent to a year’s worth of university tuition in some cases!). We were lucky to receive a Three to Be camp scholarship that helped offset some of the costs. Based on the benefits it provided for our entire family, it’s a monetary amount we’ll have to save for every year. Although her time at camp is done for the year, Syona’s already asking to go back next summer. I would call that a win.
Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary five-year-old with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.