By Layne Cameron
Tourette syndrome, a neurological disorder, is not like the measles. No red spots reveal its presence to parents and doctors. Instead, the diagnostic puzzle contains many pieces that can make early identification difficult.
Ryan's book, God Made Me Special!!!!, tells how he coped with Tourette syndrome, from the disorder's early stages through successful diagnosis and treatment.
Ryan Farrell, a Scout in Troop 125, Carmel, Ind., has Tourette syndrome. He and his family know how baffling the disorder can be, and to share his story with others, Ryan wrote a book, God Made Me Special!!!!
Karen Farrell, Ryan's mother, contributed a chapter to the book. She recalled the obsessive-compulsive behavior when Ryan was only 9 months old that turned out to be his first signs of the disorder.
Ryan had to kiss everything on his walls before he went to bed, she wrote. "If we ever went out of order, we would have to start all over or Ryan would start screaming."
Parents noticing early disruptive behaviors like obsessive-compulsiveness and short attention span in a child will hope these are "just a phase" the child is going through. But once the symptoms manifest into more alarming facial tics or verbal outbursts, parents realize the problem is more than just a stage in growing up.
It is common in its early stages for Tourette to be misdiagnosed. Many doctors tend to treat these individual, more obvious symptoms as signs of some other problem. After a patient has established a lengthy case history, however, Tourette is easier to spot.
With Ryan, what had seemed to his parents as cute childhood quirks eventually transformed into fits, telling lies, and extreme anxiety about holidays. But the Farrells, like many parents, still believed the behaviors were mischievous signs that Ryan was "all boy."
As the problems grew, Ryan was diagnosed as having Attention Deficit Hyperactivity Disorder (ADHD). Medications put those symptoms into remission, but shortly after the Farrells moved to Richmond, Ind., Ryan's condition worsened.
His belligerent behavior blossomed into facial tics (opening his mouth and sticking out his tongue) and pulling out locks of his hair.
"My parents kept telling me to stop," says Ryan, "but I had no idea I was doing it."
Finally, a doctor suspecting Tourette syndrome referred Ryan to Dr. Gerald Erenberg, a pediatric neurologist at the Cleveland Clinic Foundation. The Farrells were relieved to have a positive diagnosis. "I was just glad to know I wasn't going crazy," says Ryan.
A correct diagnosis usually ends the first phase of a family's frustration. The second phase begins as the patient adjusts to medications and therapy.
For Ryan, medication and therapy helped keep his symptoms under control.
And a better understanding of Tourette helped him deal with those schoolmates who called him "lizard" because of his facial tics or "baldy" while poking pencils at the bare spots on his scalp.
More importantly, Ryan began to appreciate those friends who always accepted him, like his fellow Scouts in Troop 125.
"Scouts are good, honest guys," Ryan notes. "They don't find joy in making fun of others."
Ryan realized this soon after transferring to Troop 125. At his second meeting, he gave a presentation on Tourette syndrome to the troop. He talked about his book, how long it took to write and, especially, how he lives with the disorder. "I answered all their questions, and they haven't asked me about it since."
Refusing to let his disability hold him back, Ryan established himself as a leader, serving in the position of troop guide. As he worked toward Eagle Scout rank, he became the first Scout in the troop to earn the Horsemanship and Shotgun Shooting merit badges.
For his Eagle project, he recruited troop members to help him line the hymnal racks at Our Lady of Mount Carmel Catholic Church with carpeting. (The project will both preserve book bindings and reduce the noise that had traditionally followed each hymn during worship service.)
Troop 125 has other members with disabilities and with exceptional talents. "One Scout has cerebral palsy, another has dyslexia," says Scoutmaster Pete Murphy. "Others are gifted at athletics or academics." This helps Ryan to be seen as just another dedicated Scout, rather than someone set apart.
Ryan's book is one of few written from a young person's perspective. "I have never before had as clear an understanding of the impact that this disorder has on a person," Dr. Erenberg wrote in the preface.
Ryan has made presentations to school and Scout groups and has served as a panelist at Tourette syndrome workshops.
"I don't want sympathy," he wrote in his book. "I just want to tell my story and help others who have Tourette or think they may have Tourette."
Freelance writer Layne Cameron lives in Indianapolis, Ind.
A Special Book by a Special Author
Ryan Farrell's writing ability was recognized even before he published his book, God Made Me Special!!!!, in 1997.
In 1995 he won first place in the Wayne County Mental Health Association essay contest, which included 850 entrants in the fifth to eighth grades. In 1996, Ryan placed second in the national "Breaking Through to Be Your Best" essay contest, sponsored by McDonald's.
Ryan's book, God Made Me Special!!!!, was a project of Children Writing for Children, an organization which produces works written by children on "specific subjects which explore the causes and consequences of today's social problems." (See "To Learn More About Tourette Syndrome" for the address of the book's publisher.)
God Made Me Special!!!! includes Ryan's account of his life with Tourette syndrome, from the disorder's early stages through successful diagnosis and treatment, and his school experiences through the sixth grade. His mother, Karen, and younger brother, Nicholas, also contributed chapters.
Ryan hoped his book would lead to a better understanding of Tourette syndrome. Those hopes have been rewarded by the positive messages he has received from readers, such as the following:
It was an absolute pleasure to read God Made Me Special!!!! to my class. I was impressed by how you conveyed your feelings about being a child of God and [about] your disability...Now, after reading your book, I can share it with my brother, who also has Tourette syndrome and ADHD.
Thank you for signing a copy of your book for him. After our mother died, I felt it was my responsibility to help my brother any way I could to make him feel special. You are lucky to have a great mother and family.
Continue to keep God in your heart. And remember: "When God measures man, he puts the tape around the heart and not the head." He will have to use more of the measuring tape to fit around your big heart. Keep growing in God's love.
What Is Tourette Syndrome?
Tourette syndrome (TS) is a neurological disorder characterized by tics (described as rapid, sudden, "involuntary," or "compelling" body movements, motor or vocal, that occur repeatedly in the same way).
The tics may occur many times a day (usually in bouts), nearly every day, or intermittently, periodically changing in number, frequency, type, location, and severity.
Symptoms can sometimes disappear for weeks or months at a time. While most persons with TS have some control over their symptoms, from seconds to hours at a time, suppressing them may merely postpone more severe outbursts.
Tics are experienced as irresistible and (like the urge to sneeze) eventually must be expressed. They increase as a result of tension or stress and decrease with relaxation or concentration on an absorbing task.
Common motor tics are grimaces, eye-blinking, shrugging, head-jerking, spitting, nose-rubbing, leg-tapping, funny steps while walking. Common vocal tics are throat-clearing, grunting, sniffing, coughing, repeating words, even barking or cursing.
Other symptoms include obsessions, compulsions, impulsions, and mood lability.
Medication can control tics and other symptoms, allowing most persons with TS to function reasonably well.
(Adapted from information published online at the Virtual Children's Hospital, http://vch.vh.org/, prepared by Becky Ottinger, education consultant of the Kansas City Chapter, Tourette Syndrome Association, and Gary R. Gaffney, M.D., associate professor of psychiatry, University of Iowa Hospitals and Clinics.)
To Learn More About Tourette Syndrome
The following sources can provide additional information about Tourette syndrome and other related disorders.
Tourette Syndrome Association
(Many states have active TSA chapters.)
Children With Tourette Syndrome: A Parents' Guide, edited by Tracy Haerle, Woodbine House, 6510 Bells Mill Rd., Bethesda, MD 20817, (800) 843-7323.
Ryan: A Mother's Story of Her Hyperactive-Tourette Syndrome Child, by Susan Hughes, Hope Press, P.O. Box 188, Duarte, CA 91009-0188, (800) 321-4039.
God Made Me Special!!!!, by Ryan C. Farrell, Raspberry Publications, Inc., P.O. Box 925, Westerville, OH 43086-6925, phone (800) 759-7171, fax (614) 899-6147.
Hi, I'm Adam: A Child's Book of Tourette Syndrome (Hope Press), by Adam Buehrens.
Adam and the Magic Marble: A Magical Adventure (Hope Press), by Adam and Carol Buehrens.
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