Books & Bricks: A Journey With Tourette Syndrome by A Westchester Mom

By NYMetroParents Staff March 20, 2013

My husband and I discovered our son’s love of words early on in our parenthood. He learned to talk early in his little life and by kindergarten, he was an articulate, attentive boy, who could always be found with a book in his hand and a subject in his heart. Half-way through the second grade, he developed an intermittent stutter in his speech. Over the next few weeks, it progressed into a kind of hiccup and he was soon diagnosed with Tourette syndrome. It was a frightening and confusing time for our family, but we vowed to our son that we would face it together.

As he began treatment, he continued to enjoy the everyday activities he and his fellow 7-year-olds did. We read stories together. He did arts and crafts and built with blocks. He played with Play-doh and played outside. He talked, sang and laughed, and loved it all. With the passing months, his symptoms became more varied, which made some days both uncomfortable and difficult. We saw subtle changes in his demeanor where he seemed more pensive; his playtime a bit less enjoyed. There were tears. But all the while he tried his hardest to stay strong. We remained encouraging, but began to wonder how his struggle would affect his young life and beyond. He would have scores of doctor’s visits, therapies and school issues ahead of him--all on top of the physical challenges of involuntary tics, which would come to ebb and flow like the tide.

So aside from his medical management, we worked hard at maintaining as much normalcy as we could--as much childhood as we could, through recreation, to restore some peace in his heart.

Playing in the sand relaxed him. Funny movies made him laugh. But his true enjoyment had always come from reading and creating with his hands. So we weren’t surprised to soon see him transforming piles of building bricks into elaborate structures and reading series of chapter books from cover to cover. He began to thrive with these imaginative outlets--and with an unexpected breakthrough, soon found he could enjoy them without any signs of tics. It was an extraordinary discovery we never anticipated, but embraced heart and soul. So this piece had curiously come full circle. These unwelcome sounds, which were so damaging to our little boy, could suddenly be tamed by the very joys that made him the child he was. He would now have rejuvenating periods of freedom from Tourette’s that would come from no one else but himself. It was tremendously empowering for him and inspiring for us as a family. Today he’s is a successful middle-schooler who enjoys most of the everyday activities 12-year-olds do. The days can still be challenging but it’s a journey we learn to manage more and more with each passing day. We know that books and bricks may not always be his favorite pastime, but we know the strength he has gained from them will last a lifetime.

Diana Hamilton lives with her husband and two sons, ages 7 and 12, in Westchester. Having certain special needs has made her son a bit older on the inside than his 12-year-old outside. Both boys are happy building with Legos at home, which is a thrill for Hamilton who also enjoys creating art from scratch.

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