Jacob & Gage
My Lights
By Debbie Major
I wanted to be a mom since I was ten years old. When my first husband passed away at the age of thirty-two, I wasn't sure I would ever be a mom. A few years later, I met Troy, we fell in love and our journey began.
My twins came early by six weeks. Jacob was smaller than Gage and needed to be in the hospital for about three weeks, as his lungs weren't developed. At around six months old, we noticed Gage wasn't able to sit up, but Jacob was. Gage also had trouble rolling his body over. He was diagnosed with Cerebral Palsy by the Cerebral Palsy Center at the age of six months.
While Gage was in treatment, (PT and OT), I always brought Jacob. He would play with toys and games in the corner of the room during therapy. When the boys were twenty-two months a therapist came over to me and asked if I had ever had Jacob tested. Tested for what? At that time Autism was a new diagnostic journey. Based on his behavior while playing during his brothers’ therapy sessions, they prompted his father and I to take him to a specialist. Turns out he had seven of the ten traits for Autism.
Gage spoke his first words at the age of four saying his name during therapy! (potty trained then too) He was fitted for braces at the age of one and had the tiniest little green wheelchair. He was so charming and loved by everyone he encountered. Love to be cuddled and loved Disney. It was important to me that he never felt sorry for himself or that he felt less about who he was because he had a physical disability. Throughout his childhood he was given chores and expectations for his behavior just like any other kid. Modifications had to be made to the house, with the car and when arranging any vacations that were taken.
Jacob was trickier, he didn’t speak and wasn’t potty trained until the age of seven. There wasn’t a ton of information about Autism and the interesting spectrum back then, so we made things up to create a balance for he and his brother. Jacob’s behavior and ticks were unique and odd. His aversion to food, and his inability to express himself and the fact that he didn't like being touched had to be addressed as well.
One of the things I found freeing was that my boys were so different that they didn’t line up under any educational schematic. The expectations from teachers, therapists and even family members were nonexistent, so I was able to write my own intention for them.
Their dad left when they were nine years old and remarried a woman who was not fond of them. They didn’t spend a lot of time with their father after that unless he came to our home to spend time with them. He passed away in 2015 due to esophageal cancer.
As teenagers, they posed different challenges, just as teenagers do. Gage was very combative, and Jacob was destructive. Hormonally every kid goes through a shift, so I was expecting some things to be different. Gage became hooked on acting as they offered him a role in the school play High School Musical. He begged me to send him to an acting school, so I looked around to enroll him. I couldn't find anything in my area that would support his needs.
Gage was also diagnosed with Asperger’s syndrome at the age of eleven. With the help of a friend, I was able to get him involved in a theater group in Manhattan called “Action Play” (adults and children on the Autism Spectrum would create and write their own plays).
While he was spending time in New York, I was working on creating a place where Gage, as well as other people with special needs, could come and act, share music & art. My nonprofit “Zylofone Studios” was alive and kicking for ten years until the pandemic hit.
My business created a new vision in the Orange County area, which spread into the five to seven counties surrounding us. We were in nursing homes, group homes, day-hab centers, & schools. We put on several theater productions and had a studio where we offered music and art, we even had a summer school at Zylofone. We performed at galas and parks and events all over the seven counties. When the pandemic hit, we had to sadly close the doors.
Back to the Boys …
When Gage left high school, he got a job at the preschool he attended as a library clerk. He has been at the same job for fifteen years. Six years ago, Gage moved into his own apartment and has grown into a very impressive young man. He was given his own guardianship during Covid and has not only succeeded as an adult but flourished. He waits every summer for the past fifteen years to attend a camp on Martha’s Vineyard, Massachusetts called “Camp Jabberwocky”. A magical place that encourages their groups to enjoy all there is to do on this amazing island!
At the age of sixteen Jacob became very violent and destructive in the house. He had to be transferred to his first group home at the Center for Discovery in Sullivan County where he finished high school. He has been Living in Middletown NY in a group home for ten years and seems quite content. He loves going to amusement parks so there is a trip planned every summer for him. He won’t go to the same amusement park twice, so we’ve had some fun adventures all over the country.
I’m so honored I had and continue to have the opportunity to guide and watch them as they grew into men. My goal was always to encourage and discipline them in a way they felt accountable. My twins have made a significant impact on my family as well as the county they live in. They have taught me about acceptance and love far beyond anything I’ve ever known. They are the light in my heart and make my world shine!
Debbie Major, Executive Assistant/Facilitator/Trainer with TRAP
Debbie Major is a Dallas-based music educator, advocate, and founder of Zylofone Studios, Inc., a nonprofit serving people with disabilities of all ages. Her work was shaped by raising twin sons with autism, cerebral palsy, and other support needs, and by more than a decade as a music teacher at Inspire Kids, an early-intervention program.
Major uses music to support learning, independence, confidence, and life skills. For more than 10 years, she has incorporated The Rhythmic Arts Project (TRAP) into her work with individuals and groups of varied ages and abilities. She now provides TRAP training throughout the Northeast and continues to advocate for meaningful opportunities and greater independence for people with disabilities.