I have a love-stress relationship with summer. I absolutely love carefree weekends outside – pools, BBQs, the beach, amusement parks. I look forward to family vacations, often one in June after school ends and another late August right before school begins. And, I’m grateful for a break from the mad rush in the mornings and the busy nights dealing with homework and activities. It’s much more fun to have evenings open for regular power walks, Pilates classes, going to the gym as a family, or girls nights. Summer gives us a pause from the crazy routine and allows us to take a breath and enjoy life so much more.
But – because we have never had luck finding a summer camp or program for Ryan – summer is also a scheduling nightmare. While Jordan has almost consistently been at the same creative arts camp since kindergarten, and he loves it there, we’ve been on an unsuccessful hunt to find something for Ryan for just as many years.
Our district offers an extended school year program (ESY) for students who qualify, which runs from 8:00am – noon, Monday-Thursday, for five weeks. It is a much more fun version of school and Ryan enjoys it. Various family members and sitters fill the gap in the afternoons and on Fridays, so those five weeks are a nice balance of routine and relaxation.
However, once ESY ends, we’re left with another six weeks of summer to fill. Camps have been a disaster.
- There was the one YMCA camp, which advertised they had a bunk for kids with special needs and thought Ryan would be a good fit. Once camp began, we realized they did not know how to work with him and we received daily phone calls about his behaviors. Luckily, one of the counselors clicked with him after a few days and became his unofficial 1-1 aide, until this counselor left camp a week early. The next day, Ryan got upset, threw a towel in the pool, and the camp promptly asked us to pick him up and keep him home for the rest of the week. (I was out of town when that happened; Dan got the call and had a few choice words for the director.)
- There was the other YMCA camp, which really could accommodate kids with special needs – except Ryan was the only verbal one in the bunk – and he did not enjoy himself.
- We had the camp in the woods designed for kids with autism. They said most of their campers love the outdoorsy environment and they offered art, music and swimming to keep the campers busy. Ryan was miserable during the 40 min ride strapped in a 5-point harness car seat and complained about the mosquitos, the dirt, and how they wouldn’t let him play the guitar in the music room. He often ran away from his counselor during the day and begged us not to make him go back. So we pulled him out after a couple of weeks.
Then came the grand finale of camps. The year the boys were going into 4th grade, Jordan decided he wanted to try a different camp for the last four weeks of summer with a friend. The camp claimed to be inclusive and said if we could get Ryan a TSS (Therapeutic Support Staff who acts as a 1-1 aide), Ryan would be more than welcome to be part of a regular bunk. Getting a TSS is a long process and we knew we qualified; we just wouldn’t know who that person would be until right before camp started. We asked if Ryan could visit the camp in the meantime to get a feel for it. We met with the director and her assistant, who clearly was not comfortable being around a child with autism.
At the meeting, Ryan asked right away, “What sensory equipment do you have?” (note: sensory equipment includes anything that can help a child either get sensory input – like a trampoline or spin disc, or calm his senses – like a weighted blanket, a tent or tunnel. Ryan went through a phase where he was very interested in sensory equipment and where he could find it.)
“It’s a camp,” the director said condescending. “We don’t have sensory equipment.” (That was our first red flag.)
Ryan looked outside at the playground. “You have swings. Those can be sensory,” he said, giving her a pointed look. And then, “This camp is stupid. I don’t want to go here.”
Despite the red flags at that meeting, we knew Jordan wanted to go to the camp, so we managed to convince Ryan he would have a great time. However, the camp strung us along up until the last minute. They had all kinds of concerns about Ryan going there, including not knowing the TSS in advance; Ryan handling himself on a bus to go to the nearby pool (umm…he takes a bus to school every day); Ryan’s ability to swim (he’d been swimming for several years); his flexibility with the camp schedule – how will he react if something changes; it went on and on. We addressed all of their concerns, but sending him there did not feel right to me after months of back and forth. In the end, I didn’t want Ryan going to a camp where the odds were stacked against him from day one and where despite them claiming to be inclusive, it was obvious he was not really welcome.
Since we’d built up Ryan’s excitement for camp, we now had to convince him something else would be more fun. We booked his sitters and family members for the entire month of August and he had a wonderful time at their pools and going out to eat. As much as I would have loved to pull Jordan from that camp, he wanted to go, so we let him have the experience. He ended up with a lead in the camp play. Afterwards, I ran into the director, who raved about him.
“We love Jordan and we’re so glad he came here,” she gushed. “We have ideas already for a show we can write featuring him next year!”
Really? What was she smoking to think there would be a next year? “Thank you,” I said. “But we won’t be coming back to camp where both of my boys are not welcome.”
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Ryan has refused to try any type of actual camp after that summer. “I hate camps. They’re stupid,” he would say when we tried. Who could really blame him?
As a result, we have to fill six weeks each summer with people to entertain Ryan. There is no schedule consistency and often two or even three people split time with him every day. It takes months to figure out the schedule and it’s so hard to keep track of it! For a kid who likes schedules and routine, you’d think the inconsistency of summer would be too much for Ryan to handle, but he loves (to quote Ryan) “relaxing for weeks and not going to camp.”
Once ESY ended this summer, Ryan very quickly became used to sleeping in and it was nearly impossible to get him moving and ready for whomever was coming that day.
The last week in July started like this:
Me – “Ryan, [name of who is coming] will be here soon. Get out of bed now if you want me to make you breakfast so you’ll be ready in time.”
“Later. I’m relaxing.”
“Not later. I have a conference call later. And I have to get Jordan to camp before that. Now.”
Sigh. “Mommy, it’s summer. I don’t want to rush. If you rush me, I am going to have a fit.”
“No, you will not have a fit. Get. Up. Now.”
“Mommy,” Ryan smiled impishly. “Do your angry voice again.”
This went on in various forms for two weeks, and then one day I had to catch a train and he wouldn’t get up.
“Ryan, if you want to eat breakfast today, make it yourself,” I said.
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I got a text from him while on the train. It said with a smiling emoji, “Mommy, I made my bed, got dressed, and ate breakfast.” I nearly fell off the seat.
“That’s wonderful,” I texted back. “Now you can do that every day!” And I’ve found if I don’t try to get him up and just do my thing, many days he does.
As we are into mid-August and summer is barreling all too quickly to an end, I’m feeling the school-year stress start to creep in and am sad there are only three weeks of summer left. But at the same time, I’m ready for Ryan to have a consistent schedule again. Maybe next summer we’ll find that perfect camp or program for him. Most likely, we will not. What I do know is we need more camps truly equipped to welcome and include kids with special needs – camps with trained staff in place to help them thrive and have a wonderful experience from an early age.
(Note: Ryan was fascinated with this blog topic and asked to read it last night. After finishing, he asked, “Mommy, so what does this mean about next summer? I can stay home and relax and not go to camp?”
Editor’s Note: Thanks to Jodi Singer for sharing her blog which originally appeared here.
Jodi Singer, is a global marketing & sales director for a professional services firm. She lives in the Philadelphia suburbs with her husband of 19 years and 14 year old twin boys, one of whom has autism. She’s been the captain of the Autism Speaks team, “Team Inspiration,” since 2010. In her ‘spare’ time, Jodi enjoys creative writing, musical theater, traveling, and spending time with family and friends.
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