Strategies for Managing Life Overwhelm with Angelman Syndrome

In this article, we delve into the challenges and strategies of living with Angelman syndrome, a neurogenetic disorder, as experienced by Sabrina L. Johnson, a mother raising a 13-year-old child with the condition.

Life with Angelman syndrome is not without its hurdles. Reflux and incontinence are common challenges, and hyperactivity is a particular challenge faced by Juliana, Sabrina's daughter. However, Sabrina has found ways to navigate these difficulties.

Sabrina advocates for a slower pace in life, finding it helpful to hit pause and not push herself too hard during challenging seasons. She understands that some seasons will be more demanding than others, and she adjusts accordingly.

One of Sabrina's strategies for managing stress is to keep a log of her triggers and respond with a specific action when she feels overburdened. Simple redirections, such as climbing back into bed with a cup of coffee, also help her cope.

During busy times of the year, like the beginning of school or an illness, Sabrina can feel pressure as a caregiver. She supports her daughter the best way she knows how, but acknowledges that she can't change many of the challenges they both face.

The months of May and the transition back to school are times of the year that require more intentionality for the family to avoid becoming overwhelmed. Sabrina has learned to stop doing an activity when she has reached her limit, which doesn't equate to neglecting her responsibilities.

Sabrina's approach is more aligned with patient-centered therapy practice than a named self-help method. She chooses to focus on small, achievable steps and adjusts her goals to her current capacities, as outlined in healthcare or therapy contexts.

Life with Angelman syndrome has an ebb and flow, with some seasons being more challenging than others. But Sabrina finds solace in knowing that she's not in this journey alone. She encourages other caregivers to seek help when needed and to remember that it's okay to do less when feeling overwhelmed. Always seek the advice of a physician or other qualified health provider with any questions regarding a medical condition.