By AUTUMN OKUSZKA, Solutions News Bureau
When Theresa Gabalis’ son Scott was diagnosed with Autism spectrum disorder (ASD) in 1999, she longed for a community of individuals who would understand and accept her son and her family. In the discovery of the Macomb/St. Clair Chapter of the Autism Society of America, Gabalis, an Oakland University alumna, developed relationships with families that would last a lifetime, despite the group disbanding.
In 2019, Gabalis aided in the creation of Macomb Autism Connect. The group allows the former Autism Society of America members to meet and maintain the relationships they have created over the years, while also welcoming new members affected by ASD.
Gabalis discusses what it means to be a caregiver for Scott as well as her relationship with Macomb Autism Connect.
Q: Please describe your role as a caregiver for Scott and what it involves on a day-to-day basis.
A: Currently, he’s getting more and more independent. He can do laundry, he can shower on his own, keeps his room clean. He can cook some things, but I’d still take most of that over. I take care of all of his banking and all of his medical and dental stuff on a day-to-day basis.
He likes to be by himself, mostly. So, I take him shopping with me. He picks out places that he wants to go. We try to plan a vacation every now and then. On a day-to-day basis, he’s pretty independent.
Q: What is a specific issue or major challenge you face in your role as a caregiver for Scott?
A: The biggest challenge is him not really comprehending what we want him to do. If we correct him, it’s a challenge. Sometimes he can get upset over the simplest things, and it’s because either I’ve interrupted him or he’s not ready to hear me. I’ll say, “did you brush your teeth today?” That could be enough for him to get mad at you.
Then what he ends up doing is kind of self-punishing himself. “I’m not going to watch TV anymore, or I’m not gonna watch TV today or I’m not going to watch videos anymore.” I never punished him, he does it himself. It’s not that he did anything really bad, he doesn’t really do anything bad.
Q: What helps you respond to any challenges with Scott?
A: I have been reading something, there’s a blog by the name of Autism Experts. I found it on Facebook. It’s a young man who’s probably a little bit older than Scott who gives you a lot of insight as to what they’re thinking because he’s a higher-functioning autistic individual.
This one pamphlet I just downloaded from his site was called “understanding boundaries.” That’s where I came up with [having] two or three positive experiences with [Scott], maybe in the morning before you come up with the “zinger” like, “you didn’t take your medicine yet.”
Q: How do you evaluate Macomb Autism Connect’s effectiveness?
A: We’ve had individual families come up to us after [events saying], “this is the first time we were able to take our son to the [movies], this is the first time we came to something like this.” Even people that have been to our events for years have come up to us [and say], “thank you so much for doing this, we have such a good time.”
Q: What are some limitations you encounter as one of the founding members of Macomb Autism Connect?
A: We don’t fundraise a whole lot. We’ve been having to charge families something toward our events, when before we really didn’t have to charge a whole lot of money. You have to make it reasonable enough so that they can attend because sometimes they have a lot of kids or they have several kids.
Q: What would it take for Macomb Autism Connect to overcome those limitations?
A: We don’t really provide resources, we’re providing social events so we’re just more honest with people. When we do see them and they’re wondering why things went up from $5 a family to $8 a family, we say, “we have to cover some of our costs.”
Somebody is donating a dessert table for our St. Patrick’s Day party because they just are. That saves us a couple of hundred dollars. So if you ask, people are very generous, but they have to know that you have the need. I think the thing is to just be more honest with people that we don’t have the funding we used to have and if you can help, or you can donate, usually people jump in and they’re very generous.
Q: What do you want people to know about yourself and other caregivers in the community?
A: I wouldn’t change a thing. [Scott’s] a great kid. I can name these kids [from Macomb Autism Connect] like boom, boom, boom. I’ve known them since they were two-three years old. I wouldn’t change any of them and I think that it’s changed me as a mother.
[Scott’s] my boy, he’s my young man. He’s brought so much to our family and the people that meet him. He’s changed. These young parents who have kids that aren’t speaking and they’re not doing anything I go, “give them time because I was in the same boat. You never know where they’re gonna go.”