Pondering Over a Year of Early Intervention Treatment
In September 2023, Jude, just nine months old, embarked on a transformative journey with the start of early intervention therapy. This therapy, a standard of treatment for managing speech, movement, and balance disorders in those living with Angelman syndrome, has since proven to be a beacon of hope and progress.
Jude's first physiotherapy appointment marked the beginning of a new chapter. Initially, the appointments and the medical jargon were overwhelming for the writer, who took on the role of Jude's primary caregiver. However, with time, the therapists, now seen as core team members in Jude's development alongside the family and other caregivers, have made the process more manageable.
The therapists' strategies are creatively incorporated into activities that Jude enjoys, such as playing with bubbles or a ball pit, making therapy a fun and engaging part of his daily routine. This approach has been instrumental in Jude's remarkable progress. A testament to this is the sight of Jude, over 12 months later, standing with assistance and snatching blueberry muffins out of the writer's hands with a smile, a feat he was unable to accomplish at 9 months old.
The mental load of fitting therapy appointments into a week of work while keeping a household running can be challenging. The writer notes that Rome won't be built in a day for Jude, but they will celebrate his milestones when he's ready, knowing how hard he's worked to reach them. If the writer could go back to the beginning of their journey into early intervention therapy, they would remind themselves that it's a marathon, not a sprint.
Caregivers of those with Angelman syndrome experience high levels of stress and fatigue. The writer suggests that open communication and collaboration are encouraged, and goals are set centered around what matters most to the family. The home caregivers implement most of Jude's therapeutic strategies, assuming the role as his in-home therapist.
The writer was initially taken aback by the fun seemingly being taken out of parenting due to the therapy. However, the quotation from Marian Wright Edelman, a U.S. activist for civil and children's rights, resonated with the writer during a period of self-doubt: "Parents have become so convinced educators know what is best for children that they forget that they themselves are really the experts." This realization has been instrumental in the writer's growth as a caregiver, empowering them to take an active role in Jude's development.
Sabrina L. Johnson, who previously worked for the American Heart Association, writes a column for Angelman Syndrome News, sharing her experiences and insights into the world of early intervention therapy for Angelman syndrome. Her work serves as a guiding light for other caregivers navigating this challenging yet rewarding journey.
It's essential to remember that it's acceptable to miss a therapy appointment or two during sickness, holidays, or when the child needs a break. The writer notes that it's crucial to maintain a balance between therapy, family life, and self-care to ensure the best possible outcomes for Jude.
As Jude continues to thrive in physiotherapy, occupational therapy, and speech therapy, the writer looks forward to celebrating more milestones in his journey. The road ahead may be long, but with perseverance, love, and the support of their core team, they are confident that Jude will reach his full potential.
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