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Goff: Being an autism parent is a 'rollercoaster of emotions'

Commonwealth Journal - 12/26/2021

Dec. 25—Daphne Goff noticed there was something different about her son Gavin shortly after he turned 2. Having raised three older children — now ranging in age from 23 to 14 — the mother felt her "surprise baby" couldn't communicate with her.

"He would say things," Goff explained, "but not words. He would just mumble and repeat the same things....Another thing I noticed is that he did not have any interest in playing with other kids."

Though Goff suspected Gavin could be autistic, she "went back and forth" on what to do for almost a year before bringing her concerns up to Gavin's pediatrician — who then referred him to Vanderbilt University Medical Center in Nashville for evaluation.

With a three-month wait to be seen at Vanderbilt, the pediatrician went ahead and ordered occupational and speech therapy for Gavin as well.

"I'm still learning about all this," Goff said. "I knew what autism was but I didn't have any knowledge of what happens when you get a diagnosis, and all the therapies that have to be done."

Gavin, who'll turn 5 next month, was diagnosed with Autism Spectrum Disorder once he was seen by the Vanderbilt specialist in September 2020. Though the spectrum can manifest in myriad ways, Gavin's particular impairments involve language and sensory processing.

"They couldn't really do much with Gavin because he won't talk," Goff said, saying the evaluation took about a half hour. "They just mainly asked me a lot of questions, and tried to get him to play."

Goff described getting Gavin's diagnosis as a grieving process.

"At first you feel like you've done something wrong as a parent," she said. "It's not your fault but as a parent, you envision your child's future...It's such a big spectrum and with him being so young, you don't have any idea how he will be when he grows up...He may be with me his whole life, but then he may not....

"It's a whole rollercoaster of emotions. Then you just accept it and do everything you can to make him be the best kid he can be. I read as much as I can to figure out what I can do."

Having the diagnosis has been key to Gavin's improvement. Goff explained that once he had been officially diagnosed as autistic, more help was available in that he qualified for full health coverage as well as a Medicaid program known as the "Michelle P. Waiver." The waiver provides assistance to individuals with intellectual or developmental disabilities to help them live in the community as independently as possible, but there is a wait list.

"I'll call every now and then to see but I'm not expecting that to come anytime soon," Goff said.

Since his diagnosis, Gavin has also been recommended for behavioral therapy (also known as ABA) but Goff noted they've been on a wait list for more than a year. Since she doesn't know a lot about it and she's already pursuing a psychology degree online from Eastern Kentucky University, Goff said she's signed up for an ABA class next semester.

While going for occupational and speech therapy once weekly at Total Pediatrics for nearly two years has helped, Goff said that Gavin has shown the most improvement through his attendance at Memorial Education CenterPulaski County's school specifically geared toward early childhood education for children from birth through 5 years of age. Memorial was recommended to Goff by friends, and she was convinced by the staff's "thorough" evaluation process.

"They did it within two weeks," Goff said. "They had a psychiatrist, occupational therapist, speech therapist, and special ed teacher all evaluate him in different areas."

Gavin was accepted and began at Memorial last December. Since the new school year started in August, Goff said her son has "come leaps and bounds" — saying one- to three-word sentences, being able to decide when given a choice between items, and acknowledging other children.

"That's a big thing," Goff said. "What he did before was copy shows that he watched on TV. So he could say whole paragraphs or sentences, but it wasn't him communicating with you....His teacher has been a dream come true; she's been a wonderful help with him.

"Gavin's a blessing to our family. He lights up our day, especially when he makes a breakthrough on something."

Goff receives videos from the class whenever Gavin reaches a milestone or does something special. She's received clips of him learning to stand in line and take a food tray. In the latest, he was hugging a classmate.

"I don't think he'd be where he is now if it hadn't been for putting him into Memorial," Goff said.

Memorial Principal Amy Smith noted that staff observations, medical records and parental input all go into the development of individualized programs for students who need special intervention. She noted the need for early childhood education, which allows young children to participate in a structured environment which provides the basis for social and academic learning.

"Early childhood education is important for all students," Smith said. "We work with students in an environment that is rich in learning and will assist them to become ready for kindergarten and lifelong learners."

Being in school has not only helped Gavin but his mother as well. As a single mother, Goff has been his sole caretaker — unable to work and not doing much for herself beyond her online classes. Goff said she was able to go to the doctor herself for the first time in years.

"When I went, I had all kinds of stuff going on where I just hadn't put myself first," she said. "I was putting the kids first."

Goff has two friends with autistic children, and they try to help each other. She's also joined a few social media groups for parents with autistic children but would like to find something in person.

"I think that would be great," she said. "Honestly if you don't have a child with autism, you cannot understand what another mother goes through."

That doesn't mean those parents — and their children — shouldn't try to understand.

"Autism has no look," Goff said. "Most of the time, people think your child is just acting out....We're constantly trying to make autistic children fit in with other children but I don't think much is put on other children to learn about children with disabilities — how to communicate with them and get on their level.

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