Lessons learnt from a year of rapid therapeutic treatments' implementation
In September 2023, Sabrina L. Johnson and her husband were first introduced to the concept of early therapeutic treatment for their son Jude, shortly after his diagnosis with Angelman syndrome. This rare genetic disorder affects development, causing delays in speech, movement, and balance.
Jude, just nine months old at the time, started early intervention therapy. The standard of treatment for managing such disorders is rooted in early intervention, a strategy that has proven effective for individuals with Angelman syndrome.
The family's home became a hub of therapy, with Jude undergoing physiotherapy, occupational therapy, and speech therapy. The caregivers, who assumed the role of in-home therapists with no prior experience, were primarily responsible for implementing Jude's therapeutic strategies.
Sabrina found the initial appointments and medical jargon overwhelming. However, she soon learned to navigate this new landscape, viewing therapists as core team members in Jude's development alongside the family and other caregivers.
Incorporating therapy into Jude's daily activities made a significant difference. Therapy strategies were seamlessly integrated into activities that Jude enjoyed, such as playing with bubbles or a ball pit. This approach not only made therapy more engaging for Jude but also helped him to progress at his own pace.
Sabrina felt that therapy took the fun out of parenting at times. But as she observed Jude's development over the months, she came to see the process as a marathon, not a sprint. The progress of Jude's development was celebrated when he was ready, understanding the hard work he had put in to reach his milestones.
Open communication and collaboration were encouraged, and clear goals were set, centred around what mattered most to the family. It was acceptable to miss therapy appointments during sickness, holidays, or when a break was needed.
The mental load of fitting therapy appointments into a busy schedule could be challenging. However, Sabrina found solace in the words of Marian Wright Edelman, a U.S. activist for civil and children's rights: "Parents have become so convinced educators know what is best for children that they forget that they themselves are really the experts."
After a year of early intervention therapy, it's been a joy to watch Jude thrive. The caregivers view their roles not just as caregivers but as invaluable partners in Jude's development journey. The hard work, the challenges, and the triumphs have all contributed to a year of progress that Sabrina and her family will cherish.
