Ana's Camp, The J3wish C0mmunity Center, did not feel that his needs could be met there, and in talking with the director, I doubt they will ever dedicate the energy to create a more inclusive camp experience. If we had endless resources and could afford the hefty camp fees plus a daily personal attendant (which is more than Elliot needs), then he could go anywhere. But this is not our reality.
From my research, the only option for Elliot was Camp Ra1nbow, run by Jeffers0n Parish, Parks and Recreation, a camp for children with disabilities. Elliot would be 2 months shy of the age 6 requirement. I learned through pointed questions, that a birth certificate would be required...but that a strong letter to my councilperson, the city attorney, and supporting documentation for our child's therapist might go a long way. I got to writing those, and was surprised at the efficiency of the city's response. By the end of the week, I was informed that Elliot would be allowed to attend the camp. And while this camp for children with special needs would not assist in the diapering and potty training of my child, "we'd figure something out." I was so excited, and began talking with Elliot about CAMP!
In the meantime, I learned about a camp being led by a former dance teacher of Elliot's: Kid's Play NOLA. I contacted the director, Dana Reed, and asked if she felt that Elliot's needs might be met there, and if we would assist in diapering once a day, would they make an accommodation. She said we'd try it out...
On paper, I think my child scares people, although I believe there are a lot of fears about children with special needs and inclusion because camps simply exclude them, and don't challenge themselves to do more. And granted, with many of them simply hiring staff a week or so before camp, I don't want them taking any risks with my child or any one elses. Something about this needs to change...
So our plan for the summer was 2 weeks of Camp Ra1nbow, 2 weeks of Kids Play NOLA, 2 more weeks of Ra1nbow. There's something to be said about bringing your child to a special needs experience with a wide range of development. When dropping Elliot off, I could see that some children had severly limited mobility and speech, cognitive awareness, social skills, etc. We were bringing him to a Jeff Parish playground, so the environment was not prepared for children...concrete walls, banquet tables, etc. Elliot LOVED seeing the basketball court, and that's where we said "goodbye," and he was quite happy. As Kevin and I walked away, we talked about the staff, and how lackluster and uninterested they seemed, especially for a first day and first meeting of a child. I had a nagging feeling, but dismissed it...I so often have to talk myself through these new experiences with Elliot (otherwise, I think he'd still be at home!)...
We made our way there for a mid-day diaper change (such a pain that this is an issue), and by the time we picked him up at the end of the day, he seemed happy but ready to go. After the first two days, it seemed that every time I picked Elliot up from camp, the TV was on...and teachers were on one side of the room,volunteers were playing board games with EACH OTHER, and there was nothing inspiring really happening. I have nothing against TV, but the times we picked El up varied greatly (1, 1:30, 2, 2:30, 3, 3:30, 4)...always the TV. One day, he grabbed the remote, and as I told him to put it down, the teacher interjected, "He's probably just pressing the 'Play Again' button." Yeah. Probably.
We'd worked out a payment plan with one of the volunteers to change him ($40/week), so that was easier, but why were we driving him here each day? In so many ways, this population needs an exceptional staff who can help bridge relationships across abilities, challenge the children's growth, engage them in new ways of feeling and experiencing life...and instead, I felt like I'd dropped my child at an institution, where the world had given up on him and his beautiful friends. The nagging feeling persisted...Do we bring him back for the last two weeks, and just look at it as daycare? Kevin's work schedule required 2 early days, but we could make it work.
Well, we tabled the discussion, as Kids Play was starting. This experience exceeded our expectations for what any camp can do. Each day, we were greeted by happy counselors, and a collection of children enthusiastically welcoming Elliot. We could see he was making friends and that the couselors recognized all the things that we love about him. Elliot would come home talking about yoga, meditation, dance, drumming, and "jumbo, jumbo." I contacted the director to tell her what an amazing time Elliot was having. She wrote me a short email: "Elliot did a dance around the room today, and the whole camp cheered him on. He is a joy, and adds so much to our experience." I cried. And read it again. And cried some more. Our child was being received in the same way we receive him at home--with great joy for his uniqueness, in celebration of his spirit. Wow.
We were excited about Kevin's day of volunteering. What would he learn about Elliot's day? Kevin volunteered on the second Thursday of the camp. The stories he came home with were beautiful-At morning meeting, the children gathered in a large room (the camp takes place on Tulane's campus in an arts complex). Mr. Seguenon, a drum teacher of unknown African origin, led the children in playing a xylophone looking instrument with gourds at the bottom. He would play a pattern of notes, and invite each child to try and replicate the melody. Elliot was 5th or 6th in the lineup. When it was his turn, the whole camp started chanting, "Go, Elliot, Go! Go Elliot GO!" Elliot took the stage, and after a few notes, called up a little girl to come help him. She jumped up enthusiastically, and together they played. At lunch time, a couple of friends assisted Elliot in opening his containers and those tricky bags of goodies. At transitions, routines, there was a friend to give a hand...not too much assistance, but just what Elliot needed to stay on task, and do what he had to do.
At the end of each day, there were children calling out, giving hugs, saying, "See you tomorrow, Elliot." What was going on here?
Then, there was the Saturday performance. The children would bring their decorated parasols and self-screened t-shirts to Ashe cultural center where they would participate in a recognition of the Middle Passage as part of a city-wide drumming experience (wow!). I was nervous to leave Elliot there an hour and a half before the performance. So much waiting for him. Would he wander away, as he does so skillfully? Would he have a diaper? As performance time grew near, we returned to see, and from downstairs, I saw him try to sneak down the stairs, and then I saw Mr. Seguenon scoop him off the stairs, hold him close, and dance with him around the upstairs...Elliot smiling from ear to ear. Another time, a group of kids sat on the stairs to block him in. He eventually gave up and sat behind them. When they were about to walk down the stairs with their parasols, I nervously imagined him tumbling down the long flight (he couldn't walk down while holding that in one hand!)...and then there was his teacher, holding his hand. Calm down, Emmy. They've got him figured out. (And yes, if it sounds like I could use a vacation, you're right!).
The group second lined and drummed their way on stage, and there they sang, danced, and drummed. At each bit, there was a child to remind Elliot of the move, help him get the cues, shoo him off the stage...twice, I saw him wander from back stage, and they got him each time. It was a dramatically different Elliot than we saw at his first kinder-performance during which he simply sat on the stage staring out...quite shocked that there were now lots of people there staring at him. This time, he worked to do what he was supposed to do, and there were a village of people there to help.
The kids took a bow, and we thought it was over. A man made an announcement, and the kids were filing out. And then, there was Elliot, sneaking away from the group, and he had taken the microphone out of the man's hands.
"Wait, Everyone. Wait, Everyone. You have to listen," Elliot said in a demanding voice, with his mouth too close to the microphone. Kevin and I were surprised, our recording devices down at our sides. I could see the man looking confused and trying to make a plan to get his microphone back. He then made a decision, and picked Elliot up, and put him in the center of the small stage. "Listen. Everyone." The crowd of 250+ grew silent. "I LOVE YOU. Thank you for coming." And with that, he turned the microphone back over, and walked off-stage.
Off course, we sappy parents let the tears that had been threatening all day come, and shook our heads. What love our son had been given, and what love he had given so freely. I could see that he had received so much love, guidance and acceptance, but also that the children had been given the opportunity to lead, to encourage, to assist, and like all of us, to admire the tenacity of this little boy who has to work just a little bit harder to do the things we take for granted. They were as grateful to him, as we were to them. He had contributed to their wonderful summer. And Elliot had felt it. And had to let them know. He had an amazing experience, and it had shaped him, given him all the things I'd wanted for his summer.
On the way out, there were photos...one girl, about 12 years old, saw Elliot taking a picture with a little boy and said, "You get to take a picture with Elliot. No Fair." We shooed her into the photo. Here, he wasn't ignored, bullied, shunned, dismissed...he was really seen for who he is--a highly social, loving friend. It was so beautiful.
It goes without saying, we've withdrawn Elliot from the last two weeks of his other camp. I don't know what we will do, and I don't care. Hopefully they will refund us some money, but I don't care. There is no added value with him at that camp.
Here's what worked about his Kids Play experience:
- Small size. I imagine there were 40 kids from 5-12 in the camp total.
- Selective admission--the camp has an admissions process where children have to answer several questions as part of being a part of the camp; they also have to sign a code of conduct. But these kids were just great kids. They live that code of conduct each day. Kevin says, "These are the best kids in the city."
- Exceptional staff--I can imagine that the attitude of the staff modeled so beautifully how to help Elliot, but not so much. These are folks who really saw Elliot in totality.
- Mixed ages--Again, another opportunity for modeling. Elliot has been in inclusive settings before. At Abeona House, Elliot was the only child with special needs in the group most of the time. His peers treated him as they treated the other children. This is what we saw at the camp, with the added piece of the much older children who would model acceptance and compassion in a very powerful way.
- A relationship--it's a good thing we knew Dana from before the camp experience. I think this is why he was accepted, and why we could also communicate openly about our concerns.
- It's FREE? Is that crazy? Guest artists each day, amazing drums, exceptional staff...I would pay a premium for this, but through funding from a host of foundations (Arts Council, Keller Family Foundation, etc.) it is a free camp. I have to admit, I wasn't sure this would be a quality experience because we weren't paying for it, but I was SO wrong!
**
Now for Mommy's challenge-
To parents of typically developing children: Don't you want your child to have a diverse experience that includes children with disabilities? Do you see what children like Elliot can add? Ask your child's camp about their policies relative to children with disabilities, and ask every time. Tell them you'd like to see more. YOU drive the market.
To NOLA summer camps: Make a committment to these children. If you don't have children with special needs in your programs, you aren't serving the community.
To NOLA funders: Demand inclusion of the programs you fund. There are no choices for parents of children with disabilities, especially if potty-training is an issue. Small accommodations can be made to give these children a rich, powerful summer full of friends and learning. They deserve it.
