As we turn toward the long summer months, many parents of children with autism are busy filling out summer program forms. If you are like me, you pause when you get to this section:
Does your child have any behavioral concerns?
Why do I pause at this question…?
First of all, I usually marvel at how little space is provided to answer such a complex question. My son’s Behavior Intervention Plan is nine pages long!
Second, the answer for my son is YES, he does have behavioral concerns. I’ll admit to being afraid to list his specific challenging behaviors for fear of being excluded from the camp. I’m tempted to simply write “some” with a little smiley face and leave it at that—-but this would be unfair to everyone—including my son who does have behavioral issues and requires staff to understand his needs and make accommodations to help him succeed. If the program can’t accommodate his needs, this camp is simply not a good fit, and the search continues.
Last summer I developed a helpful tool. I resorted to writing a letter to camp staff, in hopes that everyone involved would read the letter and better understand my child’s abilities, needs, and strategies to help him succeed. I hope this helps you communicate with summer program staff and helps your child have a happy and positive camp experience.
Lesson learned: When filling out those forms, be clear, honest, and upfront about your child’s communication skills, social abilities, self-care needs, and any behavioral concerns. In most cases, staff will attempt to provide accommodation if they know upfront. The last thing you want is that dreaded call to come pick up your child. It may happen anyway (and I’ve learned to expect it) but setting your child up for success before camp begins may decrease disappointment for everyone.
A Letter to My Summer Program Staff
My name is ARTHUR. My parents filled out this form for me.
-I am 15 years old and in an autism program at school.
-I have limited verbal skills (I use words) but my ability to express my needs is limited.
-I understand what you are saying but please speak clearly when asking me questions or giving directions.
-Please don’t talk too fast. If you ask me a question, give me several seconds to respond. You may need to ask twice. I might not answer every time.
-I am very coordinated and can run, jump and throw. Gross motor play helps make me calm.
-If I get really upset I might pinch you, myself, or friends. I also might kick the wall.
-My mom will tell you about my triggers and provide you with a list of strategies you can use before or after I get upset.
-If I’m having a hard time, I respond best if you use First Then strategy (first lunch, then art). I also like to take breaks.
-I can read so I do best with visual word schedules. I like to know what is next/what is expected of me.
-I might not want to participate in every voluntary event or activity. That’s ok.
-I can come across as unfocused, spacey and in my own head.
-Don’t take it personally if I don’t talk to you, look at you or respond to you.
-I like to script (say over and over) fragments of videos, books, movies, etc.
-I can use the bathroom on my own with out help, but you will need you to remind me, especially if it looks like I need to go.
I may not connect with you with smiles, words or by looking at you. Don’t take this personally or get too discouraged. I like you. Keep talking to me. I am more aware of the world around me than people think.
The things I like most about my home are: My computer, my sister, my dog, my parents, and those I know at school. I like to memorize people’s names and may say hello to you—over and over again. What is your birthday? I like to visit local playgrounds, parks, and museums. I like Youtube and Google Earth. I like to be tickled, chased and hugged.
My family describes me as: kind, interesting, smart, amazing, funny and fun to be around.
The qualities I like most in people: Be yourself. Have fun with me. Be flexible and clear.
My fear about Summer Camps are: I won’t know what is next or what is expected of me. If I know what is coming next I will be happier—even if I don’t like it. I like to wander so you’ll need to keep an eye on me.
I won’t run away, but I might meander.
I appreciate taking breaks, eating when I’m hungry and not getting too hot outside.
I might not want to do everything but I will try if you give me time and encouragement.
Thank you…I look forward to meeting you!
Arthur, age 15
Parents: Katrina and Ned
Phone #:555-1234 mom, 555-1235 dad
better than the smiley faces. Very informative and you’ve honored Arthur. I hope he has a wonderful summer!
Love this! Thank you for sharing this valuable tool!
This is a great letter! I never have enough space on those forms either. Although we had a couple of great, understanding camp counselors, for the most part it seemed like in “typical” camps my son just sat out by himself most of the time and didn’t participate, which didn’t seem worth the money. For the past two years we’ve sent him to a camp geared toward kids with autism, ADHD, and other social/behavioral issues (Aspiring Youth). It’s pricey, but they get where the kids are coming from and what they need, and we never have to worry about getting called to pick him up early or having him expelled from camp (which happened previously).