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Thriving in the Midst of Chaos: Parenting With Special Needs Kids


Jan 16, 2020

Episode 18: Juggling Everything with Guest Susan Scott

In this episode, we discuss navigating school, insurance, and therapies. Our guest Susan Scott discussed her son's journey finding school. Her experience was generally smooth sailing, and her son was provided with therapies in an understanding and inclusive setting. The only hiccup was when he was in daycare and the teachers left him behind in the classroom all by himself in the dark. Unfortunately, DCFS had to be called in to solve the situation. This year, he started in the public system, and his IEP was implemented. In order to cope with IEP and teacher meetings, she always came into meetings with an open mind and a kind heart, and left the boxing gloves at home. Her ex-husband had difficulty believing that their son had autism, which made navigating school and therapy services and decisions about them more difficult. This also led to poor communication in the relationship, which ultimately led to the dissolution of their marriage. Work tended to be an outlet for her, as was navigating services, as it took her out of other more stressful situations.


Regarding insurance, Susan's experience was a whirlwind. When her son was first diagnosed, their insurance deemed ABA to be educational and refused to cover ABA therapy, so Susan had to pay for ABA out of pocket. She ended up deciding to move back to her home state, because insurance mandates were more autism-friendly. She went from paying $3,000 a week for ABA out of pocket to paying $100 a week. Later on, she found another job, which didn't require any copays for ABA. She had told her employer that in order to maintain her employment at her job, her insurance needed to cover ABA or she would not be able to work there anymore. Time is of the essence with these services. However, she still spent hour upon hour on the phone with insurance begging for services and adequate coverage for her son. She also had trouble finding in-network providers, as provider lists were outdated or minimal. She coped with the stress by working and talking with family and friends.


As far as therapies, Susan's son is currently in occupational therapy at school with plans to work more on sensory processing issues and eating in the upcoming year. She has struggled with making sure the service providers were able to provide sufficient hours, due to very very long waiting lists or finding people who didn't have sufficient education/training/experience with autism. It was also difficult to manage ABA therapy codes. Susan struggled to cope with navigation of therapies. She would scream into a pillow and take long showers, but she otherwise tried to take it one day at a time. Currently, for self-care, Susan watches movies and TV shows, reads books, and texts friends.

Links:
My Autism Tribe Website
My Autism Tribe Podcast 
Facebook: My Autism Tribe
                 Susan Scott
Twitter 
Instagram 

Youtube

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Show Music:
Lion Roar: Lion Roar by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org)
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