MPW.72 / 2020 We Have Everything and this is Still Impossible by Austin Meyer
Photographer
Austin Meyer
Team Cliff & Vi

Story Summary

AJ starts his school day at his dining room table, dancing in his high chair to a Cardi B rap video before his speech therapist Zooms in to help him pronounce D-O-G. With schools across the country closed due to the coronavirus pandemic, remote learning has become a new challenge for many families. But for children with special education needs, the stakes of not returning to school are disproportionately high.

AJ is six years old and lives with his mother, father, and little sister in Sonoma County, California. When AJ was born he was diagnosed with Cornelia de Lange Syndrome, a rare genetic disorder that affects both his physical and mental development. AJ cannot speak. He is the size of a small three-year old and has the intellectual development of a two-year old.

“Being non-verbal and so small, as well as not being able to do so many of the things his peers can do, AJ’s world was already small,” says AJ’s mother, Melissa Staggs. “But now, with COVID shutting down school, his world is infinitely smaller.”

To support AJ during this time, Melissa and her husband Tim, who started their own construction business, hire a nanny to be at the house from 8:30 AM to 2:30 PM, Monday through Friday. The nanny is by AJ’s side every moment of the day, helping him with his online education, changing his diaper, playing with him in the pool, on the trampoline, or riding bikes in the driveway.

“We have everything — a beautiful home, money to pay for a nanny, and yet, I cry all the time because, without school, we can’t give him what he needs,” says Melissa. “I can’t provide him with peer models and the socialization he really needs. I’m not trained as a teacher or a therapist. I’m his mother and I just desperately want to give him everything in the world. And right now, that is impossible.”