Summer’s coming! Do you know what your children will be doing while school’s out? If you have a child with a disability, there aren’t always as many options as there are for typical children. And sometimes those options are limited to sleepaway camps. Knowing when your child (or you!) are ready for the sleepaway experience can be tricky. We spoke with one mom to find out how she knew this was the year for them!
Can you tell us about yourself and your family?
My name is Sarah Mason. Our family includes my husband Rob, and our four kids. We have two older daughters; Jasmine is 27 and Nina is 19. I have a 20-year-old son, Eddie, and our daughter Siara, who is 12. When she was about 2, Siara was diagnosed with spinal muscular atrophy (SMA), a form of muscular dystrophy. It’s genetic. Both parents have to be carriers, and even when there are two parent carriers, there’s only a 25% chance the child will have SMA. About 1 in 10,000 babies are born with SMA.
What does Siara like to do?
Siara loves video games, like Fortnite, she loves to make slime, and she plays on The Miracle League baseball team. Siara recently took up acting and was in Mary Poppins Jr. She considers herself a “sit-down comedienne” (she uses a wheelchair).
What are Siara’s plans for the summer?
Normally, our summer plans consist of relaxing by the pool, playing with friends, and taking day trips. This year, we went to check out MDA Camp.
What do you like about MDA Camp?
The most important thing about MDA camp is that it gives Siara the opportunity to go to camp. There are a million camps that children can enjoy, but not many for a child that needs extra attention. I also liked that she’ll get a 1:1 counselor. That counselor will stay with her the entire time she’s at camp. And, that counselor can stay with her every year after so they can bond and really get to know each other. They do a good job making you feel comfortable – no matter what your child’s ailment is. Some other features we liked are that the Philadelphia Flyers PowerPlay (a power wheelchair floor hockey team) come and play a game, the local fire department comes and does things with the kids. Harley Davidson comes and gives the kids rides. And it’s all for free.
What did Siara like about the camp?
Siara’s interest really got sparked when she heard that the counselors play pranks on each other. She also liked that they have a talent show. She’s planning on doing a sit-down comedy routine. And another family we know has a son who also has SMA, and he’s been going to the camp since he was 9 and talking it up. He’s now 16 and he’ll be there this summer.
Is this the first time Siara will be at sleepaway camp?
Yes. This is the first time. When she was younger, I was so nervous. When I was ready for her to try it at age 10, she wasn’t ready. We went back and forth for two years. This year, she was the catalyst. It just worked out this year. We went to the open house. By the end of the tour she was just ready. I wish there were more opportunities for all kinds of camps for all kinds of kids. For example, we don’t have any day camps near us that can accommodate Siara. If I want to sign her up for any day camp programs near me, I have to go with her. Nobody wants their mom hanging out with them. I think exposure to those kinds of opportunities would have worked to get her ready for sleepaway camp sooner. The public schools do a good job integrating all kids, but there aren’t many integrated summer camp opportunities.
Are you nervous?
The only thing I’m nervous about is her being comfortable in the camp beds. There are 4-5 girls in each cabin and 4-5 aides in each cabin. They’ll all help each other out. The whole place is accessible, so I’m not worried about her getting around. The pool has a ramp and special wheelchairs. There’s not any worry that they won’t be watching her. They make it fun. They try to make it like a full camp experience.
Is she nervous?
Not yet. She hasn’t mentioned it yet. She keeps talking about all the things she’s going to do, recording everything with her Go-Pro. She’s started working on her comedy routine.
What will you do while she’s gone for the week?
We don’t know yet. We are thinking about possibly doing a day trip or an overnight. We have been away from her before, but not when she’s not at the house.
What would you say to other parents who are thinking about sending their child to sleepaway camp?
I would say ask questions, take the time to visit the place you’re thinking about. Don’t be afraid to let the camp know what your worries are so they can address them. Keep talking to your kid. And then, just do it. Take the leap of faith. If it doesn’t work out, you don’t have to go back. Every family is scared at first. Every family is weary. But every family sends them anyway, and then they go back every year. Every single person who sends their kids to MDA camp loves it.