Dear Easter Seals CampAbility Staff,
From the moment we walked in the classroom, I knew our daughter would be in good hands. Before I could even muster up a “hello”, several of you introduced yourselves and acknowledged Lola. I tried to think of how you would know who she was because you had never met her, but the intake process for attending camp was so extensive that I’m sure you saw her picture. You probably knew her likes, her dislikes, her food preferences, and even her rare genetic condition, NR2F1, along with all its symptoms. I would guess that you knew she had limited speech, a complex visual impairment as well as epilepsy. I’m sure you were educated and prepared to give her the rescue medication if, God forbid, she had a long seizure. Before you even knew for yourselves if she had a sweet demeanor, you welcomed her with open arms. You embraced her just as she is and that meant the world to my family.
Your organization, Easter Seals Crossroads, is known for its outstanding work with people who have disabilities. We were already utilizing your Parents Night Out Program so that my husband, Rob, and I could enjoy a few hours of adult time while your staff cared for Lola and her brother, Sebastian. I wasn’t sure of other services you offered, but I was pleasantly surprised when I came across your summer camp for children with special needs called CampAbility. I found CampAbility after a frantic internet search in mid-February. While summer was months away, I was determined to find a better alternative to the camp Lola attended the previous year.
Last summer Lola went to a camp where she was the only child with special needs. I was assured she would be well-cared for and I was even told she would have a camp counselor who would be assigned to help meet her extra needs — which really isn’t many. The camp was acceptable for typically developing kids. It was probably even OK for Lola, however, my worried mind couldn’t let it go after each drop-off and pick-up. The staff wasn’t prepared to engage a child with a wandering curiosity like Lola. There were countless times we would walk in and not a soul would even acknowledge her. It felt like glorified babysitting, and I guess it kind of was. Parents were leaving their children there for 12 hours a day so I understood why the staff was exhausted. But I made a conscious choice to leave my nonverbal child and it was a decision I would later regret. I don’t think Lola was mistreated by any means, but the camp counselors didn’t know how to include her in activities. Or they didn’t know how to adapt projects, games, and play time to help suit Lola’s needs. On many occasions I would walk in and Lola would be stimming in a corner while the group was sitting in a circle singing a song. Did you ever see her stim this summer? Probably not. She’s not a stimming kind of kid. But she will if she’s bored and it was clear Lola was bored and even worse: she wasn’t being included. Do you know how much that hurt as her mother? While Lola didn’t know the difference, it was clear to me that including Lola was not a top priority. Now it’s hard to put all the blame of the camp counselors, but it wasn’t a good fit for Lola. She deserved better which is why I was elated when we found CampAbility.
At CampAbility, Lola was celebrated for the extraordinary little girl that she is. She wasn’t a hassle, she wasn’t difficult and the challenges she faces weren’t frowned upon. Every day you sent notes about Lola’s activities, her demeanor, toilet training, and eating. And every day there was one common theme — she was happy. I’m sure she had her moments because, let’s face it, she’s a four-year-old. But at each pick-up, all five of you teachers greeted me with news about Lola’s awesome day. Many times you’d happily report the progress she was making in her communication abilities. It was because of you she learned, “Ready, Set, GO!”
"Ready", Set, "Go"!! #lolarocks #nr2f1 #specialneeds
Posted by Say Hola Lola on Thursday, July 16, 2015
Many of you are therapists who specialize in working with children who have special needs or you are going to school to do something similar. You probably could have done most anything with your summer, but you chose to drive from all parts of the city to ensure our kids had the most amazing summer camp experience. And I’m here to tell you, Lola had an awesome camp experience!
You sent home a photo album of all the fun things Lola did while at camp and I still beam with happiness as I look at the pictures. She participated in all sorts of fun activities from therapeutic horseback riding and the water park, to Yoga on the Spectrum and music with Bongo Boy. But I think her favorite was the day she spent with the Center Grove High School football team. You said Center Grove High School reaches out to CampAbility every year because their football players enjoy seeing the joy the Field Day stadium experience brings to the CampAbility kids. Each player is assigned to a kiddo to ensure they are having fun. Lola looked like she had a blast being thrown up in the air on the trampoline-like material. You told me she had an ear-to-ear smile on her face the entire time. What I love about this field trip is these guys are learning about acceptance and compassion at an age when it matters the most. High school kids can be mean, but hopefully these players will remember their experience with the CampAbility children the next time they see a kid with disabilities being bullied. I hope they remember Lola’s smile if they see someone being ostracized for being different.
We truly watched Lola blossom over the six weeks of camp and we thank you for working with her. Each day she would eagerly run over to me and say, “mama, mama.” It may seem like such a small accomplishment, but I waited over four years to hear those words spoken with such love and understanding. She would happily hold my hand as we walked out to the car. She would climb into her car seat without prompting and she would ask me for a drink. I’d ask her about camp and she’d say things like “swimming” or “camp”. She gave me tiny glimpses into her day. Finally, I wasn’t left to wonder. It’s been a remarkable experience as her mother.
On the last day of camp I cried many tears. I cried because Lola will wake up on Monday and she’ll say “camp” and she won’t understand why she won’t be going back. I cried because you all loved Lola and clearly she loved each of you. I cried because you took such good care of all the kids, regardless of the task at hand. I saw you take on some pretty rough jobs whether it was cleaning an accident off the carpet, preventing a kid from hitting you, or simply being screamed at. But it didn’t matter, you took care of our kids all the same. You did it with patience, love, and compassion. Your kindness meant the world to not only our children, but also to us as parents and caregivers of children with special needs.
As we were leaving, almost all of the teachers from the three classrooms made a point to say goodbye to Lola. With each goodbye came more tears from me. Many of you asked if we would see you next year and my answer was without a doubt, yes! We will be looking forward to it!
With much love and gratitude,
Meredith & Rob Howell
Parents of Lola Howell
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