Willow Daly-Griffen, a 12-year-old from South Dayton, was one of 43 young people inducted last week into the Tourette Association of America Youth Ambassador Program – and one of only two asked to speak during a Congressional luncheon that focused in part on Tourette Syndrome research and awareness.
Her mother couldn’t have been happier, or more proud.
“When she was younger, her tics were so severe that she was injuring herself,” Jessamine Daly-Griffen said. “We never saw that in her future. Because of the good support we got and the good educational support, it made all the difference.
“Now we’ve got this kid who wants to be a marine biologist, she’s a championship competitive swimmer and she’s gone on to this ambassadorship. She really does have unlimited potential, and all of these kids do if they get the help that they need.”
Children and adults are diagnosed with Tourette Syndrome if they’ve regularly had three kinds of tics and one vocalization for at least a year.
Willow’s mom said those with the condition can sense the symptoms coming on – kind of like a sneeze – and can learn ways to blunt its impact.
The Daly-Griffen family – which also includes Willow’s dad, Jeremy, brother Ezra, 10, who also has Tourette’s, and Hazel, 5 – have found that behavioral therapy in their case can be more effective than medications that have had serious side effects.
Exercise and healthy eating also have an impact, Jessamine Daly-Griffen said.
Read a Healthy Response story about Willow in this weekend's WNY Refresh here.
“When we first took Willow to a pool to help her spend some excess energy, it kind of clicked for her,” she said. “She swam a mile that first night and we said, ‘OK, we’ve got to keep bringing her back. Exercise has a lasting effect on psychological issues. We find that exercise improves the lives for both of my kids who have Tourette’s.”
The condition is hereditary – and often goes undiagnosed in the early years, when medical and other intervention can make the greatest impact.
Families that understand tics coupled with unexplained outbursts can be signs of such a complex neurological condition – and not voluntary behavior worthy of harsh punishment – often can unleash greater potential in those whose lives include Tourette Syndrome, Jessamine Daly-Griffen said.
“When we’re faced with things we think we can’t manage, we don’t always cope in the best ways, which makes it worse. So finding out early on and getting the help early on, and helping the kids normalize their lives, etcetera – we call it Tourette etcetera or Tourette plus – that part of it has been really essential to manage it,” she said.
Western New York Families can find Tourette syndrome diagnosis and support services at tsa-gnys.org.
A support group for those with the condition and their loved ones meets from 7 to 8:30 p.m. the third Wednesday of every month in the Kenmore Library, 160 Delaware Road, Kenmore.
Below are the remarks Willow made at last week’s Congressional luncheon.
I am very excited to be attending and speaking at this year’s Congressional Tourette Syndrome Caucus Luncheon Briefing. I really appreciate that the Tourette Association of America has chosen me to represent the Greater New York State Chapter and to be able to speak as a 2016 Youth Ambassador at this luncheon. Becoming a Youth Ambassador has been a great opportunity so far for me. I’m looking forward to being able to advocate for other youths back in my home state.
To tell you a little about myself, I am 12 years old. I love playing the bass in a rock band with my Dad and my brother Ezra. I also like to dance, sing, observe nature and do research about animals. This school year, I am in a competitive swim team with my friends at our school that helps me take down my level of stress and Tourette, or TS.
I was diagnosed with TS, OCD and Anxiety at the age of 6, but I have had them pretty much my whole life. Ever since then, my family has helped me live a life with a little bit less stress by teaching me how to swim and do things I love so I could get my stress level down, and so my TS and tics wouldn’t get as bad. I have tried to rise above my challenges in growing up. I still have many challenges, because some days are great, and other days are really hard.
For example, one of my tics that I used to have was dropping to my knees, even in the middle of the road, and doing somersaults for hours at a time, everywhere, even in parking lots. These tics were severe enough that I could have been hit by a moving vehicle, or worse, killed. I was getting hurt all the time. I had so many complex tics that I needed really intense intervention to stay safe, including a full-time one-to-one aide at school. In addition to TS, OCD and Anxiety, I have also been diagnosed with Central Auditory Processing Disorder, Sensory issues and Celiac. As a result of working with a bunch of doctors, including counseling and CBIT, or Comprehensive Behavioral Intervention for Tics, and finding things I love to do and am good at, my tics are more manageable by me. It’s not easy, and the tics aren’t the hardest part anymore. Thanks Sue Connors and Dr. (Nathan) Diegelman. Making connections and friendships with other people with Tourette etc… made all the difference.
When I was younger in second grade, I was taking two medications to help tics and OCD, but the medications gave me really bad headaches, tiredness, made me sick to my stomach and then it had a side effect of making me fall asleep. I would fall asleep at school and even at the dinner table.
The companies and doctors really need to start listening, to hear what’s happening, and really paying attention to how these medications are actually making people feel. It’s hard for children. For me, it gave me heart problems. I had to wear a heart monitor and that was really scary for me and my parents and we were not notified of that very serious potential side effect from the medicine. As patients, we take medicine to try and get better, not sicker. Sometimes the medicine works to reduce symptoms, and for some people, it doesn’t work.
For me, swimming is a great therapy and I call it my medicine, because it makes me feel better and it’s nice to not tic that much in the water. People are less likely to see the tics that I’m having because I am in the water. When I go into the pool and start flying, then people notice who I really am deep inside. The only reason why I got in to the pool in the first place was because it was really helping me when I was younger. I just take my bad days and blow it out in the pool, and all the names people are calling me, I just take it out in the pool. And people cheer for me and they finally know who I am and what I’m good at. I win ribbons.
When I dance, I feel the same way. I feel like I can break down and move and blow it out on the moves and it’s expressive. Same with singing, and same with playing music, my clarinet, my bass guitar, with drawing and doing animal research. People know what I am doing, so then they cheer and they see who I really am then too.
It’s hard to deal with TS and have people pick on you for who you are. My TS isn’t the whole part of me. I want people to like me and to be able to fit in with people. I want to show the world who I am deep inside and to not have people just notice my tics and not taking me for who I am. If you are having a hard time in life, I would suggest to you, find something you Love, and DO IT! People will cheer for you too!
On behalf of all the Youth Ambassadors here today, we’d like to offer a special Thank You to Senator Murphy and Senator Isakson for Senate Bill 849, the Advancing Research for Neurological Diseases Act. Thank you for your past and continued support of the Dear Colleague letter that provides continued funding of TS at the CDC and continued efforts to support children and adults with TS.
The Tourette Association has helped many people, not just me, to succeed in school and life, normalize our Tourette, and form life-long friends, from Camp Ticapalooza, to TS picnics at Fantasy Island, Pizza parties at SkyZone, bowling parties, and the life changing experience of being trained as a national Youth Ambassador.
I am proud to speak about Tourette and what it means to us to have our voices heard. It means so much. Thank you. Today, I am proud to #Rally4Tourette!