Family Spotlight – Lexi and Tony Cusma
Lexi Cusma joins us as our guest blogger today. She has been a part of the dedicated start up team the last two years and in addition to being on the board, Lexi was the 2016 Brew Ha Ha chair and volunteers as a literacy tutor. She also attends Fantastic Friends with her brother, Tony.
My brother Tony has Down syndrome and autism, but that is just what people see on the outside. It is what is in his soul that makes Tony who he is. “Tony The Tiger” is what he calls himself- or “cuz” or “birthday boy”. On any given day this is how he introduces himself. Hey, who wouldn’t want to make everyone think it is their birthday all year long? When he introduces himself as “birthday boy” everyone always says, “Happy Birthday!” He immediately gets excited and feels so thankful, as his eyes light up with a huge smile on his face. I think he is onto something here! Tony has always had a sense of humor and loves putting smiles on people’s faces.
When we heard that GiGi’s Playhouse was going to host an improv workshop, we immediately knew Tony would love that. My mom expressed that she was worried about dropping Tony off and not being there with him, in fear he might get in a “mood” and become withdrawn. I assured her that Tony was in good hands with our volunteers, Erin and Kim. Both Erin and Kim expressed to my mom that they were super excited about this opportunity for Tony and were going to help in any way to make sure Tony and everyone else had an amazing experience. The workshop consisted of a group of participants working with comedian Jeff Blanchard and Rob Snow, founder of Stand Up for Downs, for a few hours. The family members then came at the end for a performance. Sitting with my parents in the audience watching Tony up on stage, as he unraveled out of his shell and spoke was truly an honor to witness. I could not take my eyes off the stage in fear I would miss something amazing. Tony was so proud to show his skills off to us. In that moment I knew something had changed inside him- something big! Tony was on cloud nine walking around afterwards, holding his certificate with a sense of accomplishment and pride, asking us to read it to him. This was truly an honor to experience with him and my family. Tony still talks about how much fun he had, and how excited he was to be involved. My family and I cannot stop telling friends and family about how well Tony responded to this workshop, and the positive impact it left on him. We have enjoyed seeing him approach a friend with a hug or initiate a conversation with someone. We are all so proud of Tony and his life-changing experience he had becoming an “Improv Ninja”.
Sometimes, I worry if our younger brother, Gus, and I can overshadow Tony with our big events or accomplishments like graduating college, landing our first career jobs or marriage. Tony has not had big events like these (yet!), but GiGi’s Playhouse has given Tony an opportunity to be proud of *his* big accomplishments and to achieve his Best of All. Between the Improv Workshop and his monthly Fantastic Friends gatherings or outings, Tony has made huge social gains. He now has a new friend, Grace, and they talk on the phone at 8:00pm every night. Tony and Grace met at Fantastic Friends and have created this special bond that I have never seen Tony have with a friend before. GiGi’s Playhouse is a physical location where magic happens, not just with the individuals with Down syndrome, but their families as well.
I am so honored to have been a part of bringing GiGi’s Playhouse to Cleveland. As I sit here in the Playhouse looking out at the kids running around and having a great time, I am fighting back tears of happiness and joy for all of the families we have made an impact on and all the families to come in the years ahead. Having Tony as my brother has improved my life in every aspect. He encourages me to become a better person every day. His spunky, funny, and caring personality steals the hearts of everyone he comes into contact with. I am so honored to be his big sister. I love watching Tony blossom into such a thriving adult and gain his well-deserved independence. Having a brother with Down syndrome has been the biggest blessing in my life.