In this episode, we discuss coping with managing your child’s multiple medical conditions. Our guest, Rob Gorski, has 3 sons on the autism spectrum. Although they each have autism, their symptoms are all very different, and two sons have other medical conditions as well. One son holds only a diagnosis of autism. One son has a rare fever disorder. His oldest son, Gavin, has Childhood Disintegrative Disorder, epilepsy, an autonomic disorder, Common Variable Immunodeficiency (CVID), asthma, and schizophrenia. His oldest son’s disorders have led to multiple hospitalizations to assist with management of the conditions, lasting up to 10 days each.
It is exhausting to manage multiple conditions. Luckily, his oldest son rarely gets sick, due to IVIG infusions. However, when he gets sick, this may lead to a hospital stay. His youngest sons get sick frequently, and were recently sick for 3-4 weeks with various conditions and multiple people in his home were sick at the same time. In order to fight off infections, Rob’s son requires IVIG infusions twice weekly to stay healthy. Other than 1-2 weekly psychotherapy sessions, there are medication checks and other medical appointments, adding to up to 13-14 medical appointments per week. There is usually at least one appointment every day. Luckily, there haven’t been many recent ER visits for any of his children, although there were a lot of visits when Gavin was younger, due to self-injurious behavior. Medication changes need to be managed for Gavin very carefully, or they can lead to ER visits due to adverse reactions to the medications. Gavin needs regular bloodwork (every 1-4 weeks). If there is a problem, the routine starts all over again. Although his son’s condition is relatively well-managed currently, they are working on finding ways to improve his quality of life.
It can be very difficult to parent children with multiple conditions, because their needs are all conflicting and the needs may be upsetting to the other children. Each child copes with difficulties differently. Although there are lots of aspects to managing his medical conditions, Gavin never complains about his medical management. Rob finds that he feels that he feels he copes poorly, but others tell him he appears to be coping well. Therefore, other people don’t help as much as he needs, because they think he is doing well. Writing and doing his podcast helps him to cope. Walking really helps him to cope, and he usually listens to a podcast, the news, or an audiobook. Respite care has not worked for him, as he feels less anxious when his children around him and in his care. A strong social support network has been very helpful and important to him and his family. The exhaustion has been very difficult for Rob, especially now being a single parent. In order to cope, he tries to find humor in everything, he laughs, he smiles, he jokes around. He noted that self-care is imperative, because caregiver burnout is a huge issue.
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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