We park our truck in our parish’s parking lot. That’s where I ask my son to start his breath-holding techniques. As a team of three, my husband, my 10-year-old son, and I take in breaths and hold them for a bit before letting them out. We exit the truck and calmly make our way through the parking lot. If the parishioners making their way to the entrance notice the little yips that escape my son’s mouth, they say nothing about it. My husband’s occasional deep breaths and sighs signal his own frustration with the situation. I hope that my smiles and encouragement signal patience and acceptance to my son.
We make it through the doors without a yelp, thank God. My son even manages a “Good Morning” to one of the friendly ushers. We maintain our breath holding and releasing while we dip our fingers into the holy water font. We make it all the way to a pew holding and releasing our breaths together. We kneel and pray. We then sit back and open our Missals, getting ready for the celebration of Mass. I let out a breath of relief. We did it.
My son has Tourette’s Syndrome, a neurological disorder characterized by tics and vocalizations and sometimes the compulsive utterance of obscenities.
His tics began to manifest when he was around 6 years old. At first, his yips, arm jerks, and unnecessary head shakes alarmed both me and my husband. Thankfully, our pediatrician told us that it happens to many children – and adults. A psychologist has informed us that two-thirds of people who have Tourette’s as children will outgrow it in their adult years. This piece of information permitted us to learn to live with the tics, forego medication, and develop techniques to work through them.
The tics don’t usually just happen on their own. There are triggers. Whenever my son is nervous or tired or around strangers, they are prevalent. Entering a building that’s not home bring them on, too. The silence required at Mass is a trigger onto itself. We use habit reversal training and competing responses (moves to physically prevent a tic from happening) to dispel most tics. Ignoring them and not shaming our son for them are things we employ, too.
My patience with my son is not infinite, but it is deep and long-lasting. Other hardships, such as my husband’s military career and deployments have made my son and me close. Homeschooling has helped us bond through the delight of learning new things. I’m constantly reminded what a gift my son is. He is not perfect, as no child is. But he is mine, and I adore him.
When Mass begins, I urge my son to sing the songs and say all of the prayers along with everyone else. The prayers he says with the reservations typical of a 10-year-old. The songs, though, are a different story. We have our favorites: “One Bread, One Body,” “Prayer of Saint Francis,” and “Lord, You Have Come to the Seashore.” When we hear those songs, our voices soar with that of the choir. I’m very proud of him when he sings because he gives it his all. It’s good that he puts his best efforts into the things he can control, I tell him.
Tourette’s is not that big a deal; my husband and I constantly remind our son of that. We lost our 3-year-old daughter to a neurologically degenerative disorder a few years ago. The experience taught us painful lessons in prioritization. Shakes, chirps, arm gestures, and the stares of others are things that can be managed. Seizures, paralysis, blindness, acute pain, and hospice are far more difficult.
When it’s time to receive Communion, we get in line. While his yips have stopped, his body jerks have not. I know that people in the line and folks back in their pews are probably noticing us. I put my hands on my son’s shoulders to help calm him. I’m shy, though, so I don’t look at strangers too closely. I don’t have the time to explain Tourette’s to everyone I encounter. I don’t know if they’d believe that my son’s tics are involuntary. And I don’t want to shine an even brighter spotlight on him. I look ahead to the altar and get my son to do so, too. I hope that the other parishioners understand that everyone is different. Like me, I hope that they put their best efforts to paying attention to the Mass instead of looking at others.
After we both receive the body and blood of Christ, we make our way back to the pew and kneel for prayers. One of the things I pray for is that the Holy Mother and Father comfort my son through his tics when I cannot.
After Mass, our son will ask if his tics were bad or not. If it was a bad day for tics, I tell him so. If it was a good day for controlling his tics, I tell him so. I tell him that God has a path for all of us. His older sister’s passing at a young age shined the light of God’s faith and compassion, ultimately leaving converts to our faith in her wake, which I believe was a part of her path. Learning how to live without her and teaching others about life after loss had become the path for my husband and myself. My son’s Tourette’s is part of his path; in it, he will learn patience, compassion, and ultimately, growth. I tell him that we cannot choose what is in our path. What we can do is pray for the grace to walk our path well and help others who might struggle on their paths, too.
For more information on Tourette’s Syndrome, visit the Tourette Association of America.