It just so happens that I am spending the last couple weeks of my pediatrics rotation working at a private practice that specializes in zebras. My preceptor is a pediatrician who provides health maintenance for children with "special needs." In the short time that I have been working at this private practice, I have seen a wide range of diagnoses; no child has been "normal":
- Non-accidental trauma, child abuse, and in utero exposure to alcohol and drugs. These are children with nauseating histories who otherwise would have been lost in this world if they had not been taken in by incredible adoptive parents who love these kids as their own.
- Attention deficit hyperactivity disorder, learning disorders, and developmental delay
- Autism spectrum disorder. These patients take the prize for most exasperated parents.
- Down syndrome. At various ages and levels of severity.
- Fragile X syndrome. I was struck by the variability of presentation. Aggressive behavior was the biggest concern.
- Williams syndrome. Truly a cocktail party personality.
- Prader-Willi syndrome
- Cri du chat syndrome. The child I saw was too old to have the characteristic cry.
- VACTERL syndrome
I can't overstate how helpful, in terms of my medical education, it has been to see in the flesh these patients with rare genetic disorders: to take in the gestalt of their presentation, to interact and play with them, to listen to their parents' experiences raising these children with special needs.
More personally, I am amazed, inspired, and humbled by the depth of love lavished on these children. Regular parenting is a full-time job, but caring for and raising special-needs children demands an enormous amount of fortitude that I cannot fully comprehend.
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