Mom pens book about raising autistic son
By Ksenia Lowry-Neufeld
Aug 28, 2024
CANANDAIGUA — Being a mother is challenging but rewarding. In Judy Goodman’s case, there were many challenges, but the outcome was well worth it.
In 1986, Goodman gave birth to her son, Robert. He was a healthy, happy, normal infant — but then, on his first birthday, everything changed.
Robert experienced a tonic-clonic seizure, which was known as a grand mal seizure at the time. He was in the hospital for three days. Goodman said after the seizure and his hospital stay, her son was a different child.
She knew something was wrong. He was acting erratically, showing signs of stimming — a repetitive movement or motion that people do to help them control their emotions or manage overwhelming situations. He wasn’t making eye contact, couldn’t talk, and only recognized his mother. When Robert was 3, he was diagnosed with Pervasive Developmental Disorder; his official autism diagnosis didn’t happen until he was about 7.
When someone goes through big challenges, everyone has their own way of getting through them. For Judy, it was journaling. For 38 years, she has journaled about every situation, every hospital visit, everything that has happened since Robert’s first birthday.
Recently, Goodman made the decision that her story is one that could help many other people because it is one that can be used as a reference and guide for others going through similar situations. That was when she decided she was going to put all her journals from the past 38 years together to create a book.
“Journey Through Autism: A Family’s Story” was published July 10, 2024.
“Hopefully it will give some insight that it is OK to flounder, it’s OK to fall down, it’s OK to not be ready to handle any diagnosis,” Goodman shared when speaking about her goals for the book.
To be diagnosed with autism takes a while, because many other disabilities will mimic the same symptoms. When the diagnosis finally came, Goodman didn’t let it hold Robert back.
His relationship with Happiness House in Canandaigua started when he was 18 months old, and because of the organization, his mother, and his own determination, he has achieved plenty.
The organization not only helped and supported Robert, it supported Judy as well.
“Happiness House was remarkable,” she said. “We were fortunate to embark on this meaningful journey through autism at such an exceptional school. Happiness House became my lifeline.”
When Robert was 18 months old, he started with an in-home service that was provided by the Happiness House. He continued with that for a year and a half, until he was able to attend Happiness House in person. While he was at Happiness House, they worked with him on his speech. Occupational therapy and many other services were provided to help. He was with Happiness House until the age of 5.
At that point, Robert was placed into the school district. His school district is Phelps-Clifton Springs, but at the time it was not prepared for the program Robert needed to help him succeed. Because of that, he attended a BOCES program in Newark that better fit his needs.
Although she comes from a big family, Judy didn’t tell her 10 siblings anything that was happening in their life when it came to her son. Robert’s biological dad was present in the beginning of his life, but when everything happened and the realization of the diagnosis set in, he started to exit his life.
“It was a dysfunctional family. I closed off my family because I didn’t want them to know what was happening in my life prior to the autism diagnosis,” Judy said, “so I didn’t allow them to come into the time of my life when we found out Robert was going to have lifelong issues.”
When the book was published, some of her siblings reached out and said that they didn’t know all that was going on, but the book told them everything that they missed.
“Since the book has been published and read, my family now has a sense of my life ... the door is wide open and conversations are taking place,” she said.
Sharing your story, especially when it is something as life-impacting as to what happened to Goodman, isn’t easy, and many don’t have the courage. The decision to publish the book changed everything.
Thirty-eight years later, Judy said Robert is just as determined and successful as he has always been. He earned his General Equivalency Diploma, is an Eagle Scout, is certified to be a volunteer at blood donor sites, has a job at Goodwill in Canandaigua, and owns many other accomplishments.
His next big stepping stones are living on his own and driving. He has been practicing driving for three years and hopes to be able to get his driver’s license eventually.
Judy currently works at Happiness House, as she has for 26 years. She starts her 27th year in September and does not plan on leaving anytime soon.
When it came time that Goodman wanted to do something with her journals and share her story, she noted that it wasn’t just her story. It was also Robert’s.
“With Robert, I sat him down and asked him what he thought about me sharing our story and he wasn’t too sure in the beginning,” she said. “I believe in the beginning he didn’t comprehend. The cover put a more concrete image to it and in between are all the amazing stories about him and our family. What he loves the most is that his picture is on the cover.
“Robert wanted to be a part of the story, and he is.”
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