On September 14th, Sue Connors and Andy Zimmerman hosted “Empowering Potential,” an incredible fund/friend-raising event at the Coonamessett Inn near their home in Falmouth, MA.
Sue shared a powerful story about the importance of inclusion and what it meant for her and her family to find community at The Guild. We are happy to share an excerpt of that talk with you as part of our Parent Perspectives series.
Recently, I was asked to describe something that changed my life. Many of you can guess what I am going to say. My son Patrick’s autism diagnosis completely changed the trajectory of my life compared to what my family and I had envisioned. In addition to being diagnosed with autism, Patrick is nonverbal and has intellectual disability, seizures, and inflammatory bowel disease.
Part of this journey was good! I learned a lot from Pat about child development, how communication is different from “talking,” and about unconditional love. Pat was often a riot because he had absolutely no social boundaries. But his disability changed relationships within our family, with his siblings (his older brother Tim and younger sister Katie), and between me and people in our community.
I remember once Tim was on a Little League team and he was a pitcher, a good pitcher. One weekend when he had a game, I couldn’t get a babysitter for Pat and Katie. To be honest, it was always a struggle to get a sitter for Pat, mostly because he was quite hyperactive and nonverbal, and often wandered away. So, I drove all three kids to the field. Tim went off to his team, and I climbed up the steps of the very loud, very crowded bleachers with Katie and Pat.
Pat was having what we used to call a “loud day,” but I didn’t think it would be a big problem because there was always a lot of noise and commotion at these games. Pretty soon, he started standing up frequently, vocalizing (“Ma-Ma, Waa-Waa, Badda-Badda”) and flapping his hands. He often did that if he was excited, or anxious, or needed to let off steam.
To my surprise, some guy sitting next to Patrick leaned toward me and said, “You know, he doesn’t belong here. You should take him somewhere else.” This shocked, angered, and embarrassed me. I just wanted to take the two kids and LEAVE, to become invisible. So, we left. I struggled down the steps of the bleachers, dragging Pat and carrying Katie, who was crying by then because she didn’t want to leave, and headed back to the car. On our way there the boys on the other team started imitating Pat’s vocals, making fun of him.
Episodes like that happened periodically through the years. They weren’t frequent, but they weren’t rare, either. They created a feeling of isolation, like we didn’t belong anywhere.
Anyway, Patrick eventually got into a special school for autism, graduated, and went to live at a group home. At first, the house was run by a different agency than The Guild and they could not meet his medical needs. So, the parents of the kids in the house, including me, looked for a different agency and found The Guild. That was a great find that changed Pat’s life for the better, something for which I am very grateful.
Pat’s medical needs settled down because of excellent nursing, medication supervision, and training of staff. The Guild staff always found a way to get Patrick out in the community despite his seizures. They even ordered a special kayaker’s life vest for him so that if he had a seizure in the pool at the YMCA, his face wouldn’t go in the water.
The Guild also holds a lot of events to celebrate the students and adults in their care. There are BBQs, potluck dinners, holiday parties, and dances. The adults have an award night each year where every resident gets an award for something they’ve accomplished, and there’s a nice dinner for the families, adults, and staff.
I’ve often wondered why I feel so good at these award nights. There’s a lot of loud noise, a lot of people coming and going, like that baseball game I described. And, really, Pat’s vocalizing is the same, and there are plenty of similar sounds at award night. But, this time there’s a feeling of acceptance and belonging. I realized that every family in the room has known the same struggles, the same frustrations as our family. There is no judgement.
Now, at award night, I see Patrick going to the stage, holding up his award alongside his house manager, and looking proud before he returns to our table. It feels great to be there. It’s true, The Guild helps students and adults achieve their full potential and builds a great quality of life for each individual. But they also embrace the families as part of their community, and that sets them apart.