After four years of successfully attending a local camp for children with disabilities, Nate was kicked out of the Mid-Winter Break session earlier this year. I don’t want to embarrass him by sharing the details, but I can assure you he was definitely naughty, and he absolutely broke the camp rules.
Fortunately, no one was injured or harmed in any way by his naughty behavior, but the staff assigned to work with Nate were very frustrated and out of ideas for how to manage his behavior. So, with no advance notice, no willingness to work on helping Nate improve his behavior, and no offer of increased support to enable him to continue to participate, we were notified that Nate would no longer be welcomed to attend the camp he loves.
As Nate’s mom I can tell you that this hurt as much, or more than, his learning challenges, language limitations, and hyperactivity ever did.
So, with no advance notice, no willingness to work on helping Nate improve his behavior, and no offer of increased support to enable him to continue to participate, we were notified that Nate would no longer be welcomed to attend the camp he loves.
I know that Nate’s behavior can be very difficult. He’s extraordinarily stubborn, vocal with his opposition, articulate with his criticism, and persistent with his resistance. He usually doesn’t want to do what everyone else is doing, and it’s pretty much impossible to talk him into doing something he has decided doesn’t interest him.
He has his own agenda and more determination to stick with that agenda than anyone else I’ve ever known. He’ll make an ear-splitting screechy sound when he doesn’t have the words to tell you that he’s angry or frustrated, and he’ll even occasionally swat at your hands if you try to physically encourage him to do something he doesn’t want to do.
Even when he’s happily playing, Nate is mischievous and loves to play tricks. His attention span is short and his energy level is high. He’s eager to stir up trouble, make gigantic messes and do almost anything—anywhere, anytime—for a laugh. Physical comedy is his specialty, and so is taking your prized possessions (car keys and cell phones, for example) and hiding them from you. He doesn’t always notice when the people around him aren’t enjoying his jokes, and he doesn’t “get serious” or “settle down” just because you ask him to.
Taking care of Nate can wear you out, and is probably not a job for just anyone. Spending a lot of time trying to make him go along with your plans and your schedule, at your pace, will be frustrating. It might even make you decide he’s too difficult to enjoy spending time with, or that having him involved is impossible. The camp that asked him to leave certainly came to that conclusion. But when individuals, organizations, and even specialized camps decide that people with difficult behavior are not entitled to participate, everyone loses.
Nate, and children like him, miss out on playing with other kids, exploring their communities, making connections, building skills, learning to improve and having fun. Their worlds get smaller and their opportunities to just be a kid drop away.
…when individuals, organizations, and even specialized camps decide that people with difficult behavior are not entitled to participate, everyone loses.
The people who would have had the chance to meet them and get to know them will also miss out. Without Nate around they won’t have the opportunity to laugh at his jokes, admire his persistence, observe his love of rocks and Barney, and even get a bear hug once in a while. They won’t get to know the kid behind the behavior.
When people with behavior problems are deemed too challenging to invite, include and accommodate, the day will likely be easier, but it will also most certainly be less rich, vibrant, and interesting. The good news is that there are still places out there that welcome children of all abilities, and with a full range of physical, emotional and behavioral needs.
I’ve started planning Nate’s summer by referencing the Summer Camp Directory distributed by Children’s Hospital and the Center for Children with Special Health Care Needs, and in my initial inquiries I’ve been touched by the open-mindedness of places like the Highland Center and Hopeful Hands in Bellevue, and Community Care Summer Camp in West Seattle. Their primary focus is what they can do to help support my son so that he can fully participate, and that feels good to know. Picking the right place will be difficult, but finding a camp that celebrates Nate for all his strengths and challenges will be my top priority.
My hope as the mom of a very complex, utterly unique, completely adorable, and often exasperating little guy is that the world keeps taking the extra time to make sure he’s included, even when (or especially when) he makes it hard.
Ask for help. Ask for ideas. Ask me for a few of my hard-earned tips and tricks. It is not always easy, but I promise you that if Nate is involved it will definitely be worth it.