Photo Courtesy of Joanne De Simone Joanne De Simone, who has degrees in dance and special education, has written a book called ‘Fall and Recover’ about raising two boys with disabilities.
Joanne De Simone, who has degrees in dance and special education, has written a book called ‘Fall and Recover’ about raising two boys with disabilities.
Joanne De Simone was a talented gymnast—and dancer but her real dream was motherhood.
She began babysitting when she was 12 and teaching gymnastics when she was 14. She felt she had a real connection with children.
However, for De Simone, motherhood was a rough start all around. She and her husband John were about to start a family when she had a miscarriage. Then they had Benjamin.
“Everything seemed perfectly fine,” said De Simone. “He was a good baby. He was no trouble.”
But during the first check-up, the doctor measured Ben’s head circumference and said, “His head is a little small.”
De Simone was immediately terrified. “This is not going to be a good journey,” she said.
Ultimately Ben was diagnosed with a brain malformation. At 7 months he developed a seizure disorder. De Simone’s second son, Sebastian, is on the autism spectrum.
“We didn’t suspect anything. He was always sort of a wild child. He was never still. We were very concerned he wasn’t developing language. He didn’t point at anything. That was the biggest red flag.”
De Simone shares her journey in her soon to be released book “Fall and Recovery.” It’s her story about raising two boys with disabilities through the lessons learned in dance.
The West Orange resident graduated Hunter College with degrees in dance and special education. She believes that dance transforms the way she looks at conflicts. Each chapter of the book mirrors a dance lesson with the realities of parenting children with disabilities, drawing powerful parallels between the two. Performing Jose Limon’s
“There is a Time’ guided her approach to parenting, helping her navigate pain and transform struggles into recovery. The song teaches that “through everything there is a season.”
“Each chapter details a dance lesson,” said De Simone.
With both boys, De Simone feels that there was a concrete way dance was helping. She knows about the body and how to create exercises. Benjamin needed a lot of exercise to keep his muscles supple.
And Sebastian was a sensory seeker. He had a dancing, hopping movement that took him away from interacting with everyone else. De Simone and her husband took him to a local production of “The Nutcracker.”
“He didn’t move. He was glued to it,” she said. “He was so struck.”
Then Sebastian started to hum musical scores of ballets. “It was a way for us to connect,” De Simone said.
When thinking about the role of a dancer, a performer, it put everything in a different perspective for De Simone.
“You’re telling a story, you’re trying to give that to the audience,” she said. “It’s about the message. It’s not about me and how it affects my life, it’s about my son and what he needs right now.”
These thoughts came to De Simone when Benjamin was dealing with different medical conditions. With the concepts she learned in dance, she was able to transform.
Despite the cards dealt to them, both of De Simone’s sons have amazing qualities.
“Ben is like Zen,” she said. “All you have to do is look in his eyes and appreciate being in the moment. His personality has always been outstanding. He’s joyful and resilient. I always saw that when he was young. He often has seizures when he wakes up. He always wakes up smiling. How do you wake up smiling when you know what’s coming? It’s just his joy.”
As for Sebastian, she said, “Everyone loves Sebastian. He’s genuinely interested in other people. He would always ask people about themselves. He has this unique ability to always see the good in people. If somebody does something that’s not so great, he always thinks they’re a good person, giving people grace.”
Sebastian is also an accomplished runner. He started running in middle school to make friends. “He found real community in that,” De Simone said. Continuing into high school, he made fantastic lifelong friends.
De Simone and Sebastian were instrumental in the legislative change that allowed students with intellectual disabilities to participate in NCAA Division 3 intercollegiate sports. More and more colleges are now having inclusive programs for students with disabilities.
To learn more about Joanne De Simone, visit: https://special-educationmom.com/
Joanne De Simone, who has degrees in dance and special education, has written a book called ‘Fall and Recover’ about raising two boys with disabilities.
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