Processing the complexities of our son’s happy demeanor

Prior to receiving our son Jude’s diagnosis of Angelman syndrome last April, when he was just 16 months old, we beamed with pride that he was a social butterfly who brought joy to everyone he met.

Jude’s cheerful personality has always drawn attention. Passersby, checkout cashiers, and waitresses often say to us, “What a happy boy.” Parents approach us at the swimming pool to tell us, “I’ve never seen a child enjoy swimming as much as yours does.” Strangers, trying to reassure us because we’re first-time parents, say, “Your son is so happy. He must get that from you.”

Jude’s smile is warm and pure. His laugh can be cheeky or full-bellied. It’s not uncommon for my husband, Tom, and me to wake up in the middle of the night to Jude squealing with delight. However, there is much more than meets the eye with Jude’s happiness.

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Frequent smiling and laughter, an apparent happy demeanor, and an easily excitable personality are hallmark characteristics of Angelman syndrome. The limited research on smiling and laughter for those with Angelman syndrome indicates that it occurs most frequently during social interactions, particularly when they involve eye contact, and decreases in frequency with age.

We felt naive for failing to recognize that Jude’s happy demeanor was a sign of something much more significant. For a brief period after he was diagnosed, it was challenging to enjoy Jude’s smile as we questioned whether he was happy to be spending time with us, or whether it was because he has Angelman syndrome.

Today, his happiness brings joy and meaning to my life and is all I strive to achieve as a parent. However, at times my thoughts can drift when well-meaning strangers comment on his sunny personality.

Would strangers still find Jude’s smile endearing if they knew that he has Angelman syndrome? As he grows older, will they continue to smile back at him with joy or will they do it out of pity when they learn how challenging it is for him to coordinate his movements or how hard he works at practicing self-feeding and standing? Will Jude be known only as a happy person, or will others see how beautiful his personality is, like how concerned he becomes if he notices that we’re unwell, or how playful he is with his adoring grandparents?

Over time, I realized that negative thoughts about how Jude might be perceived were simply that: thoughts. I remind myself to dismiss them as unhelpful and unproductive and to let them go. But it’s a constant challenge. When I recognize that I’m having a mental spiral, I carve out time for exercise and therapy, as I know that my mind will feel clearer afterward.

I was recently asked what our hopes and dreams were for Jude. Jude is just learning to stand and is nonverbal, so my mind initially leaped to the hope that he might one day walk or communicate his thoughts and needs. Ultimately, though, my response was much simpler: I wish for Jude to always feel happy, safe, and loved.

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.