This article was published in PublicSource
August 12, 2022
When it comes to getting to know people, 17-year-old Sammi Cooper has learned to stop thinking that someone won’t like her because she has Tourette syndrome.
“In the past, Tourette was always present in my mind when I was talking to someone new,” the Verona teen said. “I would be anxious that someone would not like me because of it. I think I’ve become a lot more confident in myself and not think about my Tourette until we’re closer and I feel comfortable disclosing it.”
Cooper isn’t alone in her disability or her journey of self-discovery and building confidence around exactly who she is.
Roughly 145,000 Pennsylvanians 17 and younger (or nearly 8%) identify as having a disability, according to the Census Bureau’s American Community Survey.
On the heels of the 32nd anniversary of the Americans with Disabilities Act and July’s Disability Pride Month celebrations, young people with disabilities and their caregivers have shared glimpses into their lives — how they navigate friendships, school and obstacles, activities or therapies that help them, and how they think about their futures — with the hope of growing awareness and a sense of belonging.
Sammi’s surging confidence
One way Sammi Cooper has managed the symptoms she experiences from Tourette syndrome is through artistic expression.
“I really love drawing and art in every form,” she said. “I like making things with my hands a lot. I go through phases of different things. I love making miniatures, origami, clay and creating. Doing things you enjoy takes your mind off things and helps me with my Tourette’s.
According to the Pennsylvania Tourette Syndrome Alliance, Tourette syndrome is a neurological disorder where one’s body produces ‘tics’ — involuntary or rapid movements.
She was diagnosed at 8-years-old. “I used to have a lot of pain. I would have tics where I’d roll my ankle or my wrists and that could cause a lot of soreness especially at the end of the day,” Cooper said. “More recently, a lot of issues I’ve had have been more OCD related, like intrusive thoughts.”
Other OCD tendencies include redoing her routines and tapping on things a certain number of times. Cooper said stress can exacerbate her symptoms. Sometimes listening to music for just five minutes can help relax her.
“I think if I’m feeling very big emotions, I tend to have very big tics,” she said. “It also depends on who I’m around. If I’m around someone else that has Tourette’s, I tend to tic way more. It’s also just random — it ebbs and flows. Any one week I can have a tic but I don’t have that next week. And it could just be gone just as fast.”
Cooper also engages in cognitive visual integration therapy.
“I get a premature urge to do [the tics], which most people do, but not everyone … [the therapy] kind of taught me how to redirect the urge to something else that was less painful,” she said. “I think it’s helped get my tics under control more as opposed to when I was first diagnosed.”
For some, the future can be a scary thing to think about. Cooper is optimistic.
“I’m in a very good place with my Tourette, and I’m very thankful for that,” she said. “I know plenty of people that aren’t at my age. In the past, I worried a lot that it would affect me. As I’ve gotten older and as the years have gone by, I’ve become much more confident in myself and what I can do despite having Tourette syndrome.”
Billy and Chardae: blessed and lucky
For Chardae Seligsohn, navigating the day-to-day with her 13-year-old son Billy can be challenging.
“I had to quit my job because Billy was doing a lot of dangerous things, like running out of the house,” she said. “I had to get 350 linear feet of fencing, which costs almost as much as my house to put in.”
Seligsohn said she and her husband “knew right away,” that Billy was developmentally delayed. At 3, Billy was diagnosed with autism Level 2 meaning he needs a lot of support.
“He wasn’t hitting the milestones as a baby and, around 16 months, he started to lose eye contact,” she said. “If you called his name or tried to talk to him, he wouldn’t look.”
There were other behaviors such as hair pulling and being nonverbal that also made the case for an autism diagnosis. Billy relies on various therapies to help increase his communication and cognitive skills — including wraparound, a set of individualized mental health services that help children figure out new ways of dealing with their emotions and relationships. He also engages in applied behavior analysis therapy, which aims to decrease problematic behaviors and increase communication and social skills.
In being Billy’s mother, Seligsohn said she has learned so much about herself.
“I feel very blessed and lucky as a parent because I think that special needs children pick their parents,” she said. “I know I could never imagine myself being a parent like this in a million years. It’s hard, but it’s rewarding because I’ve been stretched and pushed to the limits I didn’t think I could ever handle. It teaches a different type of strength and selflessness.”
Jackson: ‘Don’t blame yourself’
Jackson Drake, an 11-year-old from Mt. Lebanon, has hearing loss as a result of enlarged vestibular aqueducts, also known as EVA.
He has profound severe hearing loss in his right ear, so he wears a cochlear implant. For his left ear, he has a hearing aid because he has residual hearing in that ear.
Due to his hearing loss, it’s difficult for him to understand what conversations are going on around him.
For example, Drake said, “when [the teacher] does the microphones, you see, I can only hear her. Mostly I can’t hear anybody else. So it’s really hard to hear my friends.”
Drake wishes that people he meets would not always ask him about his cochlear implant and hearing aid.
“Everybody would ask the question, ‘What is it?’” he said. “They just look at it and stare at it. It makes me feel like they are just focusing on this, instead of me.
“I wish they could stop asking about this and ask me about something else — what’s your name? Something other than my hearing loss.”
He has some advice for those his age who also have hearing loss.
“It’s a small world and a lot of people have problems with their body,” Drake said. “You’re not alone. There’s lots of other people that have problems. Don’t blame yourself, it’s a part of life. You have to deal with some challenges.”
Hannah and Taylor: breaking the ‘glorious silence’
Hannah Chicas, a 17-year-old from Bethel Park, is going to be a junior in high school this fall. She was diagnosed with cytomegalovirus [CMV], which caused her to have mild to moderate hearing loss as an infant. For the first three and a half years of her life, she had hearing aids. At age 4, she switched to cochlear implants when she lost all of her residual hearing.
Like many students with disabilities, Chicas finds that navigating school can be difficult. Sometimes teachers don’t remember that she is in need of accommodations.
“One of the things I absolutely have to have is captions on TV and on my phone,” Chicas said. “That is something I wish most people would understand and have in school because I have had some teachers forget about it. I would have to remind them. It can also be useful not just for me, so why not have it for everyone?”
Taylor Billet of Oakmont, who is also 17, has only known a life with bilateral cochlear implants.
In Billet’s case, her cochlea was destroyed by bacterial meningitis at 14 months old. She can only hear with her cochlear implants.
“Whenever I don’t want to hear anymore, I can just take it off and enjoy glorious silence,” she said.
But it does present a challenge in the morning. Billet has to take off her implants at night to charge them, so she can’t hear when she wakes up.
The Sonic Bomb alarm clock gets her out of bed on time. The alarm clock comes with a shaker that attaches to her bed to physically shake her awake.
Chicas also uses a bed shaker to help her get out of bed in the morning. While technology can help assist people like Chicas and Billet, they also stress the importance of being advocates for themselves when out and about in the world.
Chicas said it’s important for kids with cochlear implants to be confident in themselves, no matter what life throws at them.
“Don’t be afraid to share and tell who you are with the cochlear implant,” she said. “It doesn’t make a big difference when you have the cochlear implants, you’re just you. It’s like the same thing as wearing glasses. It helps you see. Cochlear implants help you to hear.”
Billet added that there are strategies others should know for communicating with those who have hearing loss. “What works best for us is to be in an environment where there is little to no background noise. … Also to be able to see each other’s faces and for you to not cover your mouth,” she said. “Be patient with me as I try to understand what you are trying to say.”
Regardless of the kind of disability one has, it can be beneficial to find groups of people that understand the difficulties and challenges that one goes through, multiple kids said. Now that they know about Disability Pride Month, some are looking forward to joining in on the experience in the future.
Drake hopes to become an artist one day and said he would like to design a poster that has shells and rocks on it to represent his love for the beach, with a written letter that explains his condition, EVA.
Chicas didn’t know about Disability Pride celebrations. “But now that I know, I can always look forward to it every year.”
Emily Sauchelli is a PublicSource editorial intern. She can be reached at firstname.lastname@example.org
This story was fact-checked by Punya Bhasin.