"I am grateful for my time spent at Children’s Specialized Hospital during my adolescent years and I plan to continue to excel in my advocacy work to support people with disabilities in the state of New Jersey."
Former CSH Patient Dedicates Her Profession to Accessibility for Disabled Individuals
After struggling to hit milestones, Amanda Chirelli was diagnosed with spastic quadriplegia cerebral palsy (CP) at Children’s Specialized Hospital (CSH) as a toddler. She was placed in CSH’s Early Intervention program until she transitioned to outpatient services which consisted of physical, occupational, and speech therapy through her adolescent years.
Now at almost 40 years old, Amanda is a passionate advocate for people with disabilities. She shares her story of how Children’s Specialized Hospital paved the way for the person she has become.
What was your experience at CSH?
“For any parent who has a child with a disability, I highly recommend CSH. I was very happy there, made a lot of friendships, and enjoyed my time with my therapists.
I looked forward to my sessions at CSH because they challenged me in the best way and left me feeling better afterward.
In outpatient physical therapy, I spent a lot of time stretching and working through mobility exercises to stay limber and practiced modified yoga. My physical therapist pushed my boundaries in a good way – I was exhausted after her sessions!
In occupational therapy, my therapist focused on dexterity exercises with me, teaching me how to open jars and dress myself, along with stretching and handwriting practice. My therapist saw potential in me and didn’t want me to give up. Some sessions were harder than others, but she saw something in me and I really enjoyed her.
In speech and language therapy, I practiced swallowing by eating new foods and breath control through activities like breathing on a mirror. I played lots of different flutes to enhance lung capacity and started public speaking to learn to slow down my speech.
As I entered adulthood, I was interested in getting work experience, so I started volunteering at Children’s Specialized Hospital Toms River facility performing administrative tasks. After my own therapy sessions, I went straight to volunteering, and it felt great to be able to support the kids.
I also collaborated with staff to co-found Activity Connection’s Friday Night Fever, a monthly social and recreational program for teens and youth with special healthcare needs. This program still exists today and is booming!
At CSH, I saw potential in myself through therapy and the impact I had on others.”
How did you end up in your advocacy career?
“Being a patient and volunteer at CSH made me realize I wanted to be an advocate for people with disabilities who can’t speak up for themselves.
In 2020, I enrolled in an advocacy class at Rutgers University where I learned from other self-advocates, and how to connect with legislators in Washington D.C.
This was the first time I realized I wasn’t alone. I wasn’t the only one with a disability.
After receiving this certification, I started working as an Outreach Coordinator at MOCEANS Center for Independent Learning, a non-profit where I work with legislators on improvements needed around transportation services and housing needs for disabled individuals in New Jersey.
We bring legislators in the room and ask them what we can do for them.”
What current goals are you working towards?
“My biggest goal for myself is to expand my advocacy career, to keep being a voice for people with disabilities, to change some laws out there with social security and Medicaid, and to be more independent.
I want the stigma to go away that disabled people can’t grow up and have a life for themselves.”
How do you stay involved in your community?
“I am an active parishioner of my local church group for people with disabilities, Wonderfully Made Ministry at Bayside Chapel, in Barnegat, New Jersey, where I frequently share my story as a keynote speaker for special events. I am honored to be a role model for neurodiverse individuals, participating in activities, and helping parents of kids with special needs grow their faith.
It’s what helps me with my cerebral palsy. My main purpose when I share my story is to help others.
We’re just trying to be like everyone else. Maybe we need a little special, different care, but it doesn’t mean we can’t live our lives.”
Do you have any advice for parents/caregivers of children with special health care needs?
“Call your local Division of Developmental Disabilities (DDD) and get your child registered right away. DDD is a New Jersey state agency that provides public funding for services and support to individuals ages 21 and older with an intellectual and/or developmental disability. I was able to receive funding for a day program as well as for a handicap-accessible bathroom remodeling. Unfortunately, it’s a service that not many people are aware of.
I am grateful for my time spent at Children’s Specialized Hospital during my adolescent years and I plan to continue to excel in my advocacy work to support people with disabilities in the state of New Jersey.”
Learn more about Children’s Specialized Hospital’s outpatient programs.