Mar 06, 2012 0 Share

Summer Camp Begins with Winter Work


Memo of how to best communicate with author's daughter.
Artwork by Rebecca Faye Smith Galli

Summer’s coming! We may have dodged the extreme snowfall of recent years, but not the planning required to make sure our kids with autism have summer activities—and we have peace of mind.

This year, I am ready. Madison’s camp confirmation first arrived in an email over a month ago, and then in my mailbox. The thick mailing included a summary of the essential paperwork:

  • Green Medical Form: Complete
  • Pink Medication Form: Complete
  • Purple Horseback Riding Permission Form: Complete

Our plans are set—but it has not always been so easy.

For 14 years, I had sent my other children to summer camps where I was surprised to learn that activity is a major adjustment for both child and parent. For a long time, I simply could not imagine it for my Madison.

How would she adjust? Could they take care of her? And that darn, “What if” thinking delayed my actions.

I did make attempts to learn about camp programs. In those pre-Internet days, I followed up on the occasional camp flyers sent home from school. And, I did attend the locally sponsored Special Needs Camp Fair to meet with regional representatives. But, I stopped going after the first year, since most of the camps required the child to be potty trained, a feat Madison didn’t accomplish until she was almost 10. At least she wasn’t a “runner”—very few camps accepted kids who regularly tried to leave the premises.

Finally, after more research, parent networking, and good old-fashioned relentless pursuit, I found a five-day sleepover camp that was highly recommended by another parent. Madison attended and came home unharmed and happy.

I thought all had gone well.

But a few weeks later, with no real explanation, she was kindly asked not to return the next year.

Devastated, I began the search again. I found a couple of local day camps. One, however, was discontinued after its first session. The other was terribly understaffed, even with the addition of a one-on-one I hired to attend with Madison. The program was not structured enough, so Madison’s behaviors escalated—as did my concern.

Finally, I learned about a well-established camp in Catoctin Mountains near Camp David. And the rigorous application process to Camp Greentop began.

The first step was to attend a Visitor’s Day during camp where I met the staff and saw kids at camp in action. I could envision Madison at the lunch table, in the cabin, and in her number one favorite activity—the swimming pool! I met with the director, talked with a mother of a successful camper, and then decided to apply.

The application process revealed even more attention to the details of daily living. After an interview with a program specialist, the application arrived. A skills checklist of activities from dawn to dusk offered a rating of "Independent," "Needs verbal prompts" or "Needs physical assistance." They were speaking my language!

I hoped they would speak Madison’s.

Talking was difficult for Madison. Only after intensive ABA (Applied Behavior Analysis) therapy, did she finally find her words. Even now, at age 19, we teach every word she knows. So her language is highly scripted and sometimes difficult to understand.

To help the staff, I created a "cheat sheet" and called it, "Madison-eze" or "What is she saying?"

 "I want skejul, please," means she wants her schedule for the next activities.

"I want dideo, please," means she wants to watch a video.

"I want mummy, please," means she wants to be wrapped tightly in a blanket like a mummy.

And to help staff know how to communicate with Madison, I had sent in another set of tips, “Communicating with Madison,” garnished with a family photo.

Although we were waitlisted the first year, we finally applied early enough and she was accepted. She has been a Camp Greentop camper for the last seven years and now has a new phrase to add to the list, “I want camp, please.”

As always, Madison’s success results in a straight-up learning curve for me. Here are five tips for others in search of a good camp program:

  • Look for a thorough admissions process that reflects this statement, “Who is your child so we can care for him or her.” For most, that means a detailed questionnaire, health forms and releases, and often a personal interview that may include the child.
  • Look for highly trained and motivated staff that knows the population and want to be there. Inquire about their selection and training process. Training programs should last several days, not hours. Ask for a profile of a typical counselor—education, experience, job expectations—and how many counselors return each year.
  • Ask how they communicate with parents during camp. Some offer email services, online photo viewing, and/or daily camp updates or blogs.
  • Ask how they evaluate their program. Do they seek feedback from parents? How do they measure their success?
  • Check references, talk to other parents, and allow plenty of time for research. Good camps fill up quickly, often after the last session. 

And then, most importantly, put “what if” thinking in its place. Don’t let it rule your life and deprive your child of a wonderful summer experience.