A close friend of mine told me all about The Arc of Oklahoma when she began working for the nonprofit years ago, and when my son, Luke, was diagnosed with Tourette Syndrome (TS) at five years old, this same friend assured me that even though I felt completely lost in how to best plan for Luke’s future as a person with TS, there would be support and a community available to my family when we needed it. While Luke’s TS is mild, there are so many symptoms beyond the involuntary vocalizations and movements (tics) he experiences that can take a toll on his physical, mental and emotional wellbeing.
Luke’s journey with TS
At nine-years-old, Luke is now aware of his diagnosis. He knows that his tics are out of his control and while that can feel terrifying at times, he knows that, eventually, they will subside for a period until they begin again. Luke knows that his TS is accompanied by symptoms like migraines, abdominal migraines, muscle aches and pains, and often severe anxiety. We are still working on how to best treat Luke’s physical symptoms. The emotional symptoms feel heavier.
Luke, like many neurodivergent individuals, is incredibly bright and has an IQ well above those of his peers. He is very social, friendly and naturally curious. Like so many adolescents, Luke wants to feel as “normal” as possible and the realization that TS and neurodivergence comes with a stigma certainly throws a wrench in that pursuit. Luke’s neurologist told my husband and I that his tics will peak during puberty before likely easing up in his adulthood. What we didn’t expect was that the need to be Luke’s advocates would increase with his age as well.
My husband and I strive to learn everything about TS that we can and, until recently, we had come to accept that our journey as Luke’s advocates would be a solitary one. With 1 in nearly 200 children being diagnosed with Tourette Syndrome in the United States, we’ve realized that our families, Luke’s teachers and friends, and even some of Luke’s medical providers, are not familiar with the ins and outs of Tourette Syndrome. Often, Luke is the first person with TS they’ve ever met. We’ve gladly stepped into the role of educating his teachers and informing our loved ones of his diagnosis, relieved that they are open to learning and understanding.
The power of community and shared experience through The Arc of Oklahoma
When The Arc of Oklahoma reached out last month, asking if I wanted to take part in a respite retreat in Sulphur, I accepted the invitation with gratitude but, admittedly, some hesitation as well. The retreat would include a 2-day, 3-night stay at the beautiful Artesian hotel in Sulphur, meet and greet opportunities with other mothers of neurodivergent children, spa services and guest speakers. My world revolves around my son so departing from him, my husband and our home in Oklahoma City, even for a short while, was a struggle.
What awaited me in Sulphur is hard to describe. The women welcomed me with smiles and hugs. They asked what my son was diagnosed with but didn’t need any further explanation. We swapped stories, resources, tips and phone numbers, and I left feeling renewed, empowered, supported and grateful beyond measure.
The Arc of Oklahoma introduced me to a new community; a group of mothers who have fought every battle imaginable for their children and emerged as champions on the other side. They welcomed me into their group with open arms and the realization that my husband and I are no longer alone in our efforts to advocate for our son is the best gift we could have received.
The Arc of Oklahoma promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. The organization provides family support and advocates for public policies that ensure Oklahomans with intellectual and developmental disabilities have a voice, access to essential services, and the ability to live with dignity and independence.
Nazarene, Austin, and Luke Harris live in Oklahoma City with their golden retriever, Dave, and cats, Tiger and Tessi. You can reach her at niqbal418@gmail.com.
