BY MATT MACKINDER
Clarkston News Editor

With May being Tourette Syndrome Awareness Month, Clarkston resident Anne Baldwin, who was just crowned the title of Mrs. Michigan AmeriCAN, recently released a children’s book, “What Makes Me…Me,” inspired by her 10-year-old son Levi, who has the disease.
Baldwin is using her platform to create awareness and representation for kids with a neurodiversity diagnosis in an easy-to-understand way.
Baldwin is also sharing the tough details of Levi’s medical journey to normalize the guilt and shame parents and children often deal with. Baldwin knows firsthand how difficult this can be, as Levi has been impacted by mental afflictions, such as OCD, anxiety, depression and suicidal thoughts and ideations.
“After my son Levi was diagnosed with Tourette Syndrome, I saw his struggle with feeling like he didn’t fit in and that he viewed his differences as a negative,” Baldwin said. “Over time, I also realized that most people don’t understand what Tourette Syndrome really is. Most people know the stigmatized and stereotype of Tourette from what they see in the media, but not what the syndrome really encompasses. I also realized that there was very little representation in classrooms for kids like him. So, I wanted to change this. I figured what better way to create something that was easy for kids of all ages to understand, than a picture book. Because I am not an author, and because of self-doubt, I went back and forth on if I could actually write a book. But then in the spring of 2020 when the world was shut down, I saw no better time to start and got to work.
“Taking Levi’s experiences as well as my feelings towards his struggles and strengths, I created “What Makes Me…Me.” Since our kids were young, we’ve celebrated their differences as what makes them special and how our differences are in fact our superpowers. I wanted to share this message not only with other kids like my son, but kids who may have never met someone with Tourette Syndrome. This book works as a steppingstone for kids to learn about the basics of Tourette and open a larger conversation with the adults in their life. I don’t just want kids to understand what neurological differences are, I want to teach them compassion towards others who may not look, or act like them.
As it pertains to the experiences with her son, Baldwin said there are certain things people maybe don’t know about Tourette Syndrome, and this is addressed in the book.
“In our experience, most people tend to think of Tourette Syndrome as ‘the swearing disease’ or where a person is uncontrollable in what they say,” said Baldwin. “While upsetting, it is understandable that this is how most people view TS because this is how it is depicted in the media. A main goal in writing our book was to help end that harmful stigma. Tourette Syndrome is a neurological disorder that causes involuntary sounds and movements. This can be anything from sniffing, eye blinking, whistling or more complex such as full body tics that cause pain.
“The form of Tourette Syndrome that most people think of is greatly exaggerated. It is called coprolalia and only about 10 percent of those diagnosed with TS show that symptom. Levi has struggled with this before. Thankfully, it is not a main tic for him, but it is present and can be deeply upsetting for him.”
Originally from Clarkston, Baldwin said moving back here from out east has done wonders for Levi’s struggles, especially with the staff at Pine Knob Elementary.
“When Levi was first diagnosed, we were living in New Jersey in a suburb of New York City,” Baldwin said. “We had an incredibly difficult experience with his school his entire kindergarten year, to the point that I was ready to pull him out and homeschool him. Right around the same time, my husband had a job offer here in Clarkston, my hometown, and I knew that if we were going to have a child with extra needs, Clarkston was the place to be.
“We’ve been in Clarkston schools now for almost four years and it has been nothing short of amazing. The entire staff at Pine Knob have been welcoming and understanding. They’ve really embraced Levi and have gone above and beyond to make sure he is comfortable in school or to learn more when they may not understand what he’s going through. I really attribute this to the principal, Jodi Yeloushan, and the inclusive and loving environment she has created at Pine Knob.”
Regarding the book, which is available on Amazon, Baldwin noted she is giving back as part of her initiative.
“Because representation and exposure are so important to us, I do a 2-for-1 book program,” said Baldwin. “For every one book sold, I donate two books to a school or organization. Over the last six months, I have donated over 450 books nationwide. I have a goal to donate 1,000 books by the end of 2022.”
For more information, visit the Instagram account @connect.ions to learn more about day-to-day life with Tourette Syndrome.