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A Piece of My Mind
October 1, 2019

Driving in the Minivan—Life as a Pediatrician and Parent of a Child With Disabilities

Author Affiliations
  • 1Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, University of Michigan, Ann Arbor
JAMA. 2019;322(13):1255-1256. doi:10.1001/jama.2019.14889

As I drive the family minivan, with hip-hop music blasting against my sanity, I look in the rearview mirror at my daughter snug in her car seat and entranced with the world passing by her window. We head to our fourth medical appointment of the day, and the radio is tuned to the local hip-hop station. The base thumps and vibrates as we roll along, accompanied by the shrill high-pitched feedback of her hearing aid mold that is just slightly out of place. My daughter can’t hear—she is deaf. They tell me that she might hear low and loud noises, so our preferred NPR station has been replaced by music with a thrumming base.

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    1 Comment for this article
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    An Uncertain Journey
    Alice Rini, JD, MS, RN | Not-for-Profit Organization
    Your article hit very close to home. We, too, have a child affected by a viral infection during pregnancy, and he is a perfect third child. But this was 50 years ago and the available remedies were far fewer and the clinical knowledge far less developed. Our son was diagnosed with hearing impairment at about 10 months when he did not have the language skills similar to those of his siblings at the same age. He also had hypocalcemia, something that was little known at the time--later understood as hypoparathyroidism--and still poorly treated. He was in speech therapy, special education, and saw many specialist MD's, but in convertibles and sportscars (to each his own). He got hearing aids at 18 months; his first words were, "Mom, I can hear!" My husband and I were dismissed from the parent support group because we were too well educated (??). Our son graduated from high school and vocational school, has worked full time since then for a financial corporation, quite successfully. The hypoglycemia treatment eventually damaged his kidneys so he had to have dialysis, which he managed on his own at home, and then got a kidney transplant. He has not had an easy life, nor have we, but we would not change anything. Our son has been a joy and an inspiration to his very successful siblings and others. He is loved and loves others. Be of good cheer: you are blessed.
    CONFLICT OF INTEREST: None Reported
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