In this episode, we discuss bumpy journeys to diagnosis and treatment, advocating for your children, and making lemonade out of lemons. Guest Jessica Barisano noticed differences in her son early on, but doctors thought it was just lactose intolerance. It took seeing numerous pediatricians over 3 years for him to be properly diagnosed with a genetic growth disorder. This diagnosis opened up a whole new world, and Trent, her son, saw a slew of different doctors. He was later also diagnosed with Autism, ADHD, developmental delays, speech delays, and vision impairment. Having a diagnosis was helpful for Jessica, as she knew her son had something going on and it was relieving and validating that her motherly instincts had been correct.
The first order of treatment was hormone injections, which he will need for the rest of his life. Trent hates the nightly injection but he deals with it as best he can. Once they had the diagnosis of autism, Trent started applied behavioral analysis, which then helped him to engage in occupational and speech therapies. He is currently getting all of his therapies through the school system, including behavioral therapy and speech therapy. Although getting diagnoses was difficult for Jessica and Trent, therapies went quite smoothly, since the therapists were in the same hospital system.
School, however, was a different story. It was the hardest challenge for Jessica and Trent. Trent started daycare at age 1. It was painful for Jessica to see neurotypical children meeting their milestones, while Trent was not. Whenever she picked her son up, Jessica was given behavioral reports. Trent was asked to leave several schools, including private schools, charter schools, and faith-based schools due to behaviors that were beyond his control. Schools were not willing to work with Trent and Jessica. Trent started public school partway through Kindergarten, and it has gone well for him ever since. However, his earlier experiences had really affected his self-esteem. The public school system was able to provide them the proper IEP for Trent and was able to provide him the supports he needed to be successful in school.
Jessica initially went with what the doctors said until her son was finally correctly diagnosed. Once he was, she realized how she could advocate for her son, and began to be a huge advocate for her son. She armed herself with preparation, research, and questions. Jessica always recommends making sure to have the “right team,” meaning the best doctors and therapists for your child. This may mean going through different doctors and therapists, but it is imperative to find the right fit for your child. It is very important to find a connection with each doctor and therapist. Just know, it may take a few sessions with that person to know if it is a good fit or not. To find helpful resources, as your child’s therapists, as they have all the inside scoop on resources.
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Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple