Goals that matter most for our child living with Angelman syndrome

Like many people, I usually set a few goals at the start of each year, mostly focused on self-care: exercising regularly, getting outdoors, and taking time off when I need a break.

But this year, my thinking has shifted. Instead of focusing on what I wanted to change about myself, I thought more intentionally about the life my husband, Tom, and I are building for our 3-year-old son, Jude, who has Angelman syndrome, and what truly matters to us as a family.

We developed the first set of goals through close collaboration with Jude’s speech therapist, physiotherapist, and occupational therapist. Early intervention therapy can easily turn into a long list of home exercises or focus on achieving developmental milestones, but we took a step back and asked a much simpler question: What would actually make daily life easier and more meaningful for Jude and our family?

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We voiced what would truly make a difference in our daily lives: Jude standing while we help him get dressed. Jude pushing himself up from a chair or toilet. Jude feeding himself, and all caregivers participating in family mealtimes before the food goes cold. And, most importantly, because our son is nonverbal, Jude expressing his wants, needs, and opinions. These might sound like small things, but they represent important and meaningful steps toward independence in Jude’s everyday routines.

So, this year, we started focusing on what would help Jude reach those goals. We’re encouraging Jude to self-feed more regularly with a spoon (not just a fork), starting with hand-on-hand assistance. We’re targeting, but not always achieving, a goal to use Jude’s augmentative and alternative communication device at least three extra times a day. And we’ve also set a goal of offering Jude more choices in his everyday routines: Apples or chips? Bubbles or light-up toys? (The answer is almost always the latter.)

He won’t reach these goals overnight, and maybe not even by the end of the year. However, all of these moments have something in common: They are practical, achievable, and embedded in our daily routines.

Setting aside time for fun

Clockwise from top left: Jude enjoys the sand at Killcare, New South Wales, Australia; Jude soars at his first (but not last) indoor skydiving experience; Jude shares a train ride with his father, Tom; Jude and his father spend time in the pool. (Photos by Joelene Wand)

But the second category of goals has nothing to do with therapy. Instead, it was about intentionally creating family experiences for Jude.

Like many families, our weekdays fill up quickly with work, therapy appointments, and the basic logistics of everyday life. We’re also time-poor on weekends, when we try to catch up with friends and family or plan for the week ahead.

It was only during the holidays that I realized how rarely we set aside time to simply do fun family activities with Jude. When the pace slowed, we suddenly had the time to visit the zoo together or take longer walks with Jude in his stroller. Those experiences matter just as much as therapy goals.

So, this year, I’ve been making a conscious effort, when the time allows, to focus on Jude’s activities — those he genuinely enjoys and can fully participate in. Jude loves the splash park, the beach, ball pits, and train rides. He also absolutely delights in the sensation of wind in his face, so we took him indoor skydiving for his belated third birthday present, and he had an absolute blast.

These activities don’t need to be extravagant, nor do they need to happen every weekend. Sometimes, it’s a walk around the neighborhood after dinner as a family. I look forward to one day having regular pizza and movie nights as a family, or taking Jude horseback riding or surfing. Because Jude deserves a childhood filled not only with therapy sessions and developmental goals, but also with experiences, excitement, and joy.

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.