Why We Don't Need to Understand My Nonverbal Nephew


My nephew is 10 years old and of average height for his age. When he walks, it’s slow and unsteady. Looking at his waistline, it’s clear there’s some “stuff” going on: gastric/umbilical hernia in need of fixing (again) and an insulin pump on his waist pumping life-saving fluid into his body. Looking further down, pronounced coxa vara (a hip condition) and genu valgum (knock-knees) are visible. You can also see his flat feet with multiple scars from his clubbed foot operation.

He doesn’t talk except for a limited number of words. He throws tantrums like a 3-year-old with the added strength of a 10-year-old.

The list of diagnoses are almost endless: type 1 diabetes; possible FG syndrome; connective tissue disorder (most likely Loeys-Dietz syndrome); cardiac and pulmonary complications due to the connective tissue issues; autism spectrum disorder; mild-to-moderate intellectual disability; speech aphasia; hypothyroidism and more… He has around 10 specialist doctors at my last count. There are times it’s hard to comprehend why all these things happened to one small body.

But then he will show us he’s so much more than his diagnoses. Like when he switches on my computer, moves the pointer to press on the password tab and calls me, waiting for me to enter my password — the same way his 6-year-old brother does — only to push me away and continue to the desired folder filled with his favorite videos and music (interestingly, just like his brother does).

Or when he demands a hug from his brother because he really, really loves him. Then of course, there are the times he’ll hit and punch that same brother because he really, really doesn’t always love him.

His smile can demand a grin from the stuffiest stranger’s face, just like his tantrum (in the middle of a crowded shopping mall, of course!) can bring a frown and raised eyebrows to a sweet old granny’s face.

He’s joyous as much as angry. Demanding as well as accepting. Strong, oh so strong, but still so very fragile. (Three fractures in one year was truly enough.) He’s loving, kind, naughty, friendly, sarcastic (without uttering a single word) — he’s amazing.

You don’t need to understand him or his diagnoses. Just love him as he demands and deserves to be loved.

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