My Why
Last Saturday night was the eighth Annual Superhero Center for Autism's Masquerade Ball. It was Amanda and my third Masquerade Ball.
It was a great night. Amanda did a great job coordinating it. I didn't have much of a role except for doing a few small errands for Amanda.
It was a good night, but we were worried about it. Why? Because our first ball, we spent time talking to other autism parents and meeting some close friends. Our second ball, we spent watching a video memorializing Dree Bear. For our third ball, we are out of the shock we were in two months after losing Audrey. We couldn't leave early like the first two since, Amanda was in charge of the thing. But why did she and I take seats on the board of directors last year? The easy answer is for Audrey's memory. I took Audrey's birthday off work last year, and did some small maintenance things at the center in her memory. Shortly after that, we both were asked to join the board. I took the role of volunteer coordinator and Amanda became the fundraising event coordinator. It may have started out that simple, but it evolved into something else than that.
The roles on the board were definitely different than we thought they would be.
But to explain how our whys have evolved, we need to go back in time with the ghost of masquerade balls past.
2022: We had a busy weekend for the first ball we attended. We spent the night before in Bloomington to attend the Ilinois State University Homecoming parade in the morning. Sounds like a pretty normal thing for parents of a 4 year old and 6 year old girl to do. It seemed like a perfect post covid gathering to hang out with my close college friends and have the girls play with their daughter. It was something that we did pre- Audrey back in 2017. But it wasn't normal in Normal. Things that seemed normal for other parents were ultra difficult. Doing things now are difficult, but a different difficult.
Amanda and I thought the ball was going to be difficult because of all the thoughts of Audrey. While Audrey had never been to a ball, last year, she was all we were thinking of. It didn't seem to be as bad as we had thought it could be. Sure, we thought of Audrey. I brought 2 of Audrey's memorial stones: they were based off her love of the center. One stone said "Fight like a superhero," and one said "Dance like a princess." When we were rushing out the door, Amanda asked if I had anything with Audrey on it, and I showed her the stones. I took the stones and placed them on our table. It also helped that the ABA therapy center were sponsors and they sent three staff including one of Audrey's favorite people in the whole world. We also were sitting next to my parents, and our friend and her friend from out of town. We were disappointed that we were going to be the only parents in the "club" there. Even in a ballroom with 240+ attendees where roughly 50 parents had children on the spectrum, we felt a little isolated. But our friend's friend, came from out of town, only to attend the ball, because her older son was autistic and didn't have a resource like the superhero center. There was no ABA then, and even the offerings the school system had were not as robust. She shared her story, and we felt a little bit closer to the community.
2022: Right after the parade, we went to the food court that my college friend and I went to often. Audrey threw a major fit in the food court, and we are asked to leave. Illinois State University trains more special education teachers than any other school in the state, yet we felt left out again. We walked through the quad to a restaurant in uptown Normal. While it was 2022, and the rest of the world started going to restaurants again, it seemed like at the time, that was not an option to us. I took Hannah with me and my friends, and their kid, and Amanda went back to wait in the car in the garage as Audrey was simply done. Amanda told me to take my time with lunch and come back when we were done with some food for her and Audrey. Soon, I would be called again, as it was time to go, because Audrey had spilled drink all over herself in the car and was waiting naked in the car (no more clean clothes) with Amanda. I know many parents feel like that can't take their families out because of the behaviors that autism embodies. While we felt this at time, we always did our best to have Audrey do as close to what Hannah would have been doing with out her there.
Audrey never lost her sweet personality and her love for her sister (and eventually her friends), but everything else seemed to change from there. We would eventually meet more epilepsy families and eventually more autism families. At first, like many autism families, we had to explain her autism to other families who seemed mad at our lack of parenting. I remember the feeling as a young kid at the Y said- "I don't want to play with her, she doesn't follow directions." I also dreaded the feeling at playgrounds when families would get uncomfortable when Audrey would focus on kids smaller than here and repeatedly call them "baby" no matter if they were verbal and older than her. As Audrey got older, there was a combination of us getting more comfortable in those situations, and parents seemed to notice more that Audrey had special needs. Y Kid's care's staff and kids got to know and love Audrey. "Baby" and "Boy" also became names for Audrey's friends through school and ABA. Audrey's harness and other technology that we used to adapt life for Audrey may have had a part in this. ABA and the superhero center also gave us tools to help us feel more accepted and comfortable in those situations.
Anyway, I came to realize throughout the past eight months on the board, which have not been easy, that at least my dedication to the center is not just in Audrey's memory, but for all of her "babies" and their parents too. I want them to have the same acceptance that we felt through the center.
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