By Chris Croll
This interview with the mother of a child who has ADHD and Tourette syndrome is one in a series that profiles children who have conditions, diagnoses or temperaments that require specialized support from parents, teachers, coaches, therapists, friends, family members and other influential people in their lives. The goal of these profiles is to elicit greater empathy from the community for these high-needs children and their families.
Croll: What does it mean to have ADHD and Tourette’s syndrome?
Lisa: ADHD is defined as a chronic condition related to attention difficulty, hyperactivity and impulsiveness. Tourette syndrome is a nervous system disorder involving repetitive movements and unwanted sounds. More than 60 percent of those with Tourette syndrome also have ADHD. The two are neurologically related.
Croll: How does your son’s exceptionalities impact his ability to be successful academically and socially?
Lisa: Our son’s issues impact him so much more than we initially realized. He’s gifted academically so his grades are always high, but he must work twice as hard as everyone else to do well because he has trouble focusing on the work. He is aware that he is different, and it bothers him a lot. He once asked me, “How come my brain doesn’t work right?” We tell him that he is differently-abled, but it upsets him that he can’t function the same way as the other kids around him.
He’s at the age (8 years old) when kids are starting to tease him for his tics which sometimes involve four or five involuntary movements and sounds. One boy told my son that he was “disabled.” He came home and asked us what that meant. It was a heartbreaking conversation.
Croll: What are some of the unique parenting challenges you face?
Lisa: When our son was diagnosed, I was scared because it felt like our lives would never be the same again. There was testing, therapies, finding the right doctors, medication, waiting with bated breath for side effects of the medication, hours of OT, etc. I did tons of research and my husband and I had hours and hours of discussions (and a few arguments) about how to move forward.
We also dealt with some very unsympathetic family members who questioned and judged our parenting approach. People feel entitled to do that when your child is different. Some people told us we were too hard on him, others said we were too lenient. There are many days I have silently said to myself, “I can’t do this!” Then I feel guilty for feeling that way when other parents out there have it so much harder than I do.
One thing that surprised me is that we aren’t really accepted in the “special education” parenting circles. It’s almost like, “Oh your son only has ADHD and Tourette’s … he’s not really special needs.” I want to say, “Walk a mile in my shoes, people!” My son isn’t accepted in the normal kid circles either. We don’t fit in anywhere. It’s very isolating.
Croll: What are some of the challenges your child faces from being different?
Lisa: Our son feels misunderstood. At school he is often made to feel like he’s a bad kid when one poor choice in a day—like kicking a lunchbox or having a disagreement with a classmate—results in him missing out on something fun. He is very hard on himself. This year he has started to say, “I hate myself.” It’s awful to watch your child’s self-esteem erode away.
Croll: What type of education environment does your child attend?
Lisa: He currently attends public school. We are considering getting him an [individualized education plan] because he is starting to dislike school and we need his teachers to make accommodations such as giving him jobs in the classroom to keep him busy during unstructured time or designing projects that allow him to utilize his strengths.
Croll: How do you think your child is perceived by others?
Lisa: Two words: “That kid.” He is loved by his family and by his best friend, who goes to a different school, but if you were to ask me what some other parent or child probably thinks about my son, that’s my honest answer. He’s that kid.
Croll: What would you like others to understand about your child and others like him?
Lisa: If our kids could control their “stuff,” they would. Why don’t people see that? These kids are trying so hard. I want people to look past the diagnosis and see who these children really are and the great people they will one day become. Where is the compassion in our community?
Chris Croll is a parenting consultant specializing in educating and raising gifted and twice-exceptional children. She leads the National Center for Gifted Services and the nonprofit Loudoun County Parents of Gifted Students.