It’s summertime and if you haven’t already enrolled your child in a camp, there is still time to do so. If you don’t do it this year, you can start planning for the next. This post is to help you navigate the extra challenges of preparing your special needs child for camp.
1) Do your research on what camps are available for your special needs child.
Your child’s needs and abilities should be your starting point. If he/she has life-threatening medical needs, you may want to start with a specialized camp where they are trained to handle the medical condition. You know your child best. If your child needs a lot of structure like my children, then a camp with only a loose schedule, or lots of unstructured playtime is probably not a good fit. In cases like mine, you may want to look at highly structured camps with set goals–like a programming camp. Assess and do your research.
2) Start small and practice
Start with a day camp or a single overnight camp. Practice monitoring vitals beforehand. If your child will be outside and exerting themselves, go the park and simulate conditions, then come home and have your son or daughter do a self-check. Keep practicing to increase confidence and skill.
If your child’s needs are cognitive based, using social stories, outings, and smaller camps to help prepare him or her will help. Pay attention to the environment and sensory stimuli. Repeated exposure can build confidence in your child’s ability to navigate a situation.
Each year as your child grows, you can give your child more and more challenges and responsibility. It may take you a few years before you work up to a week on their own.
3) Meet with camp leaders and staff beforehand
If you meet with leaders and staff beforehand, you can formulate a plan to help your child get the most out of the camp.
One friend whose child has OI (Brittle bone disease) formulated a plan how her wheelchair bound child would be able to participate in a multi-day outdoor camp. Often she or her husband volunteer too.
When you meet with them, you also prepare leaders and staff to handle any situations that may arise. This can range from what to do with metabolic diseases, sickle-cell crisis, breaks with brittle bone disease or emotional meltdowns or explosions with cognitive challenges. Information and preparation is empowering for handling situations correctly.
A year ago I posted about a scout who faced extra challenges at camp. None of us knew the leadership at that program had changed. The previous leadership had been well versed in how to work with boys with Autism. Had we known the boy was going to face newer and less experienced leaders, we would have met with them ahead of time. We would likely have avoided all the problems we ended up with.
4)Â Make sure all leaders have your contact information–preferably already stored in their phone
If there is any kind of situation (insulin crash, allergic reactions, major meltdown, sickle-cell crisis) you need leaders to be able to reach you fast and easily. Pre-programming your number and potentially that if your doctor will help facilitate a speedy reaction to your child’s needs. There are times when time is absolutely of the essence.
5) Whenever possible, send your special needs child to camp with another child who knows him or her well.
Having a familiar face can lessen anxiety. It can also positively remind your child to self-check medically, practice calming techniques and keep perspective. My son, Lawboy willing helped his friend at a specialized camp they attended. He and “Goodfriend” balance and help each other out in frustration levels and reminding each other some of the really little things don’t matter. Acroboy also went with my son Lawboy to his first year at camp. Our summer vacation plans meant they would miss camp with our unit. We signed them to to a district provisional troop so they could still work on scouting.  Lawboy earned more merit badges, shared a tent with his brother and helped him during a couple of rough days.
Acroboy spent most of his time in the first year camper program, and earned a couple of handicraft merit badges. When asked he said, “Yeah, I was really glad he [Lawboy] came. He showed me around, made me less lonely and helped me a lot.”
6) Relax and learn from experience
In the end our job as parents is to raise independent adults who contribute to society. Some of our kids may never achieve complete independence due to their disabilities. But inasmuch as we can empower them to be in charge of their own destinies, we should do what it takes to get them there. Sending your child out into the world is nerve-racking. It is all the more anxiety provoking when you just don’t know how well they are going to handle things. At the end of the day, you do the best you can to prepare and you hope and pray for the outcome. It isn’t always ideal, but it almost always provides lessons you can take for the next time around.
An example of mistakes and learning from our lives–
I remember the first time I sent my oldest out for camping without either my husband or I around. I was super nervous. At the time I wasn’t talking much about his Asperger diagnosis, so I made mistakes. His leaders didn’t understand why he got so terrified at thunderstorms (a combination of loud noise sensory processing and anxiety). They kept telling him to “man up.” It was hard for my son, but the experience taught him he could do really hard things. Somehow with lots of tiem and reflection he felt positive about the experience. However, do I wish I had talked to his scout leaders? Absolutely. Do I wish I had prepared him with things he could do to distract himself during the storm and given him noise reducing headphones? Yep.
It took a while for him to get over the embarrassment of being the only one who had such a hard time with storms. We are lucky he had enough positive experiences during the rest of the camp and school year to outweigh his embarrassment. As a result, he kept going to camp each year. My son tells me the rough times of the first year of scout camp prepared him for the second year. He anticipated and prepared himself mentally for weather storms, and the leadership knew of his autism. As a result, he had a much better experience.
In the end…
Firstborn kept at it, and he went on to earn his Eagle Scout rank, two Eagle Palms and the National Medal of Merit for saving his little sister’s life. Scouting taught him the skills to recognize his sister was choking. Repeated practice and divine intervention helped him stay calm in a real-life emergency. Was the growth process hard? Absolutely. Am I glad we did it? Words just can’t express my joy. Scout camp and all the weekly activities were a key part of that.
To finish off this post, I wanted to share the experiences of my friend Jane*.
Jane and Ellie’s Story
I sent Ellie* to a diabetes specific camp the first 2 summers. Staffed by medical volunteers and full of kids with the same needs. This empowered her to take care of herself under doctor supervision, and was easier on me.
Then when she went to other camps (church camp, school camps), she was used to meeting her own needs better.
I met individually with as many adults that would be taking care of her as I could–camp nurse, counselors, directors, etc so everyone knew how to help her daily and in emergencies. And I printed out everything so there were copies on file, with adults, with supplies, and in her stuff. I packed and re-checked her supplies. I gave her a phone to call me with any issues. But I would not have sent her off far away or for more than a night or two until I was confident she could meet her own needs (minus any emergencies) and handle the responsibility. So we practiced at home as much as was practical and gave the tools she needed (monitors, carb counting books, back up supplies, her own food if needed, etc).
She went to diabetes camp at 10 and 11. First for 2 nights, the next year for 5. She did LDS girls camp at 12, because we knew the camp nurse well (she was a public school nurse and had diabetic care training). She [the nurse] came to our house and learned how to use all of her [Ellie’s] supplies and called me with any issues. I think Ellie ended up sleeping in her tent 2 of the nights. If she [the nurse] wasn’t there, I would have gone with her.
At 13 we did one-on-one training with her ward leader. Then we moved to this stake where she was already friends with Sister Hall by camp so I didn’t worry as much. But I still checked in with her daily more as a reminder to take care of herself. Her supportive friends really made the difference they reminded her to check, were excited to learn how to help her, and made her comfortable taking care of things in front of them. If she wasn’t, it would have been more of a struggle. She is pretty much independent now. (Currently at EFY on her own).
My hope
My hope is this post helps those of you with special needs kids. We have extra demands that must be met for the health and welfare of our children. However, that does not mean we can’t find ways to provide typical kid experiences for them. I wish you all the best and would love to hear any additional suggestions you might have in the comments or Facebook group.
Good luck and have a “bee”-utiful day!