I have hesitated to share this story.
As a parent, there is a vulnerability that comes with sharing your child’s struggles — especially when they are still part of your child’s journey. But I also know the power of hearing someone else say, “You are not alone.” And if sharing our experience helps another parent feel seen, supported, or a little less isolated, then it is worth it.
When our son was a toddler, he seemed to be right on track, maybe even ahead of the curve. He spoke in clear sentences by the time he was one, interacted naturally with family and friends, showed typical emotional reactions, and was just a happy little guy.
Things started to change in first grade.
Looking back, there were likely many things happening at once. Maybe it was the transition to sitting in a classroom all day. Maybe it was the loss of my mom that year and the stress that brought into our home. Maybe it was a combination of things. If I knew then what I know now about co-regulation, I would have done many things differently.
The changes seemed to come out of nowhere. The struggles over clothing became intense. Socks couldn’t have seams. (Yes, sensory-friendly seamless socks exist, and yes, they are somehow $30 a pair.) His food choices became more limited. Items on his plate couldn’t be touching. And after school, it often felt like he had held everything together all day and then released it the moment he walked through the door.
Then the tics started.
At first, they were subtle. Over time, they became more overwhelming for him. We went to the pediatrician, again. We were told it wasn’t unusual for children his age to have tics and that he would likely grow out of them.
He didn’t.
We searched for answers, contacted specialists, tried occupational therapy, and did everything we could find to support him. Eventually, we traveled to a specialist in St. Petersburg for a full evaluation. He was diagnosed with Tourette’s Syndrome and Sensory Processing Disorder.
Having answers helped, but it didn’t make the journey easy. Finding the right supports in our community was still a challenge.
Ultimately, we decided to enroll him in a small private school where he could receive more individualized support. Today, he is thriving. He still says he doesn’t like school, but the sensory-related struggles are much less frequent. He still has tics, but he has learned ways to calm himself and recognize when something is becoming overwhelming.
What has stayed with me throughout this experience is that even with my background in nonprofit work and my connection to an organization that supports parents every day, I still felt lost.
Because parenting is hard.
When you see your child struggling and you don’t know how to help, it is one of the most difficult feelings a parent can experience.
I am sharing our story because there may be another parent reading this who recognizes pieces of their own journey. Maybe they are wondering if they are alone. Maybe they are questioning whether they are doing enough. Maybe they just need to know that another parent has been there too.
