Reflections after a year of early intervention therapy
Here's advice I wished I'd heard after my son's Angelman syndrome diagnosis
In September, my husband and I marked a year since my son Jude, then 9 months old, started early intervention therapy, the standard of treatment for managing speech, movement, and balance disorders in those living with Angelman syndrome.
A doctor who’d been treating Jude for sleep apnea since he was 3 weeks old first recommended that we investigate his delayed development. We walked into his first physiotherapy appointment on Sept. 19, 2023, with some hesitation and skepticism. After all, each child develops at a unique pace, and our friends and family assured us with such confidence that Jude would catch up in his own time.
But over six months later, we learned just how unique Jude was when he was diagnosed with Angelman syndrome.
A year in, it’s been a joy to watch Jude thrive in physiotherapy, occupational therapy, and speech therapy. However, it hasn’t always been smooth sailing. The appointments and medical jargon were initially overwhelming, and I felt that therapy took the fun out of parenting. It wasn’t uncommon for me to send texts to my husband, saying such things as, “He cried the whole time.”
If I could go back to the beginning of our journey into early intervention therapy, I’d tell myself the following.
It’s a marathon, not a sprint
It’s sometimes challenging to find enjoyment or observe developmental gains over months or years of practicing the same skills. However, there’s beauty in leaning into a slower pace of life and reminding myself how far Jude has come, thanks to determination and persistence.
At 9 months, he was unable to grasp objects or sit for longer than 10 seconds before toppling over. Today, over 12 months later, he’s standing with assistance and snatching blueberry muffins out of my hands with a smile.
We’re all in this together
Therapy appointments in a clinic comprise but a small portion of Jude’s day-to-day life. We home caregivers implement most of his therapeutic strategies, assuming the role as Jude’s in-home therapist suddenly and with no experience.
Shortly after we learned that Jude had Angelman syndrome, I came across a quotation from Marian Wright Edelman, a U.S. activist for civil and children’s rights, that resonated with me 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.”
As we grew more confident in understanding Jude, we began to see his therapists as core team members in his development alongside us and his other caregivers.
We encourage open communication and collaboration, work together to set clear goals centered around what matters most to us as a family, and focus on incorporating therapy strategies into what Jude enjoys — even if we’re playing with bubbles or a ball pit for what feels like a lifetime.
Strike a balance
Therapy is not limited to attending an appointment. It can also include travel, unpaid administrative work, physical lifting and transferring, and MacGyvering activities out of household objects. One of the most challenging aspects can be the mental load of fitting, or Tetrising, appointments into a week of work while keeping a household running and caring for others.
Caregivers of those with Angelman syndrome experience high levels of stress and fatigue, which can leave them little time to prioritize looking after themselves.
It’s OK to miss a therapy appointment or two during sickness or holidays, or simply when you or your child need a break. Every minute of the day doesn’t need to be tied to a therapy goal, and we’re much happier focusing on simply enjoying life with Jude.
Rome won’t be built in a day for Jude, but we’ll celebrate his milestones when he’s ready, knowing how hard he’s worked to reach them.
Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.
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