What My Special Needs Child Said to Someone Who Told Her She Looks “Normal”

My daughter is brilliant, amazing, beautiful, funny and has a laundry list of medical diagnoses. She has: intractable epilepsy, autism, Ehlers-Danlos syndrome, a feeding tube and developmental delays. She is 6 years old and has six 3-inch, three-ring binders with all her medical documentation set up for every specialist, social service provider and regular doctor.

My girl is sweet and charming and her smile is disarming. When meeting new people, she is either shy or boisterous (depending on her mood) and her disabilities are often invisible… at first. Inevitably, something happens that causes her daddy or me to share one or two of her special qualities. When the diagnosis is shared, we often are met with the phrase, “Wow, she looks so normal.”

kris-giesen-mighty-1
Photo credit: Kris Giesen | birdsinmymest.blogspot

I understand their misguided attempt to make me “feel better” by telling me how normal-looking my child is, but what should she look like? Would it be easier for people if all those with disabilities were colored purple? Or maybe had a star on their bellies like Dr. Seuss’s Sneetches? Why should my daughter’s lists of conditions make any difference in how you describe her? Because she has epilepsy, did her beautiful smile become somewhat tainted? Due to her autism, did her funny joke and belly laugh become warning signals?

And is there anyone anywhere who’s “normal”?


Kris Giesen
Kris Giesen
Kris Giesen is the mom to three extraordinary kids: an upcoming college freshman (yikes), a high school junior and her little Bird, who will be in first grade. She’s a mother, teacher, writer and coffee addict who has a bit of an obsession with all things Jim Henson and would be completely misunderstood without her amazing partner in crime, Patrick (aka Big Pirate Captain Daddy… because some things you just can’t make up). Follow her blog, Birds in the Nest.

Related Posts

Comments

Recent Stories