We’re All Our Own Dog
Roswell, Georgia (Senate District 56)
On a typical day, John McCarty starts his morning with breakfast and listening to the news. He likes to stay informed. After lunch, John and his mom, Joan, walk the neighborhood for about a mile, sometimes with their neighbor and her dog. While some dogs make John nervous, his neighbor’s dog, Gretel, a black Bernese Mountain Dog, and John have been getting to know each other for quite a while now. Still, “She’s her own dog,” John observes, meaning that the dog is quirky and not always very predictable.
Around three years ago, John’s life took a pretty profound shift. He felt he was virtually trapped in his body and his mind, unable to communicate with the outside world effectively because of his autism. Yet, he was completely aware of everything that was happening to him.
“It has changed my life completely,” John says. “Before, I could rarely make myself understood.” The change has come thanks to an assistive speech board he and his mom learned to use together. (Story continues below after slideshow.)
Because the kind of autism John has affects the fine motor skills (speech), he has had to train his gross motor skills (arm and shoulder) to help him communicate. His family came to discover that they had been misunderstanding or misreading a lot of what he had to say.
“Before I would ask, ‘Do you want to go to the pool today, John?’” Joan remembers. “And he would say, ‘Pool. Pool. Pool!’ I thought that the force or intensity of his words was excitement, that he really wanted to go. After we were able to get the board up and running, I discovered it actually meant he didn’t want to go to the pool at all.” “That’s a great example,” John agrees.
Now the McCarty family celebrates November 8, 2014 as what John has come to call his Day of Freedom, the day his mom first mastered the letterboard. Every year since then, John puts together a party invite list of his friends and people he thinks really care, orders a platter of Kroger chicken, as well as a platter of subs from Publix, and everyone gathers to celebrate John’s newfound ability to connect. Although John has been on SSI since he was 18, he does not currently receive any additional services or support through Medicaid. He has been on the short-term waiting list for nearly five years. Lack of support services for John has kept his mom from being able to do anything but engage in an occasional part-time job. When they finally figure out how to help John go to college, she’ll likely have to go with him unless they can get more support.
Active in his church’s baking ministry, which provides food for luncheons and funerals, we asked John if he bakes from scratch or uses pre-packaged recipes: “We are very much baking snobs; we bake only from scratch,” John replies, “My dinner specialty is sausage soup. People think my baking is great.” It is great! We were handed some treats walking out the door, and frankly, the long drive home in traffic was made much better by John’s blondie brownies.
John is one of five kids. His youngest two siblings, who are twins, just started Georgia Tech this fall, and he would very much like to go to college, just like all of his brothers and sisters have been able to do. “I want to go now,” John says, “I’m 23. I’m running out of time. I feel like I have been denied just about all of my civil rights, and I’m ready to get a degree, then a brain job.” Joan explains that, in their house, a “brain job” is something you do because you have a brain you can use for your own livelihood. “Other people with a developmental disability might get a job stocking shelves at Walgreens, but that would never be satisfying to John. He’s really smart, and he could use his brain for a lot with the right support.” John’s not completely sure what he wants to do with a degree because he’s never really gotten to go to school, but he says, “At one point, I thought about law.”
When we asked John what he would say if we brought a legislator to sit right there with him at his dining room table, he said, “I would want them to know that, if I don’t get some support, I will never get a job and be a tax paying citizen. I can be productive, and I have talents, but I need support.”
Writer: Shannon Turner, Photographer: Haylee Fucini-Lenkey