Today is World Down Syndrome Day. My daughter Alice was born on 3/20. Yesterday we took her out for a birthday dinner which she loved. #downsyndrome #parenting
The date was chosen because March 21st, 3/21, represents Trisomy 21, the medical term for Down syndrome. Alice was born the day before. Down syndrome has a number of commonalities among those who carry the extra gene on the 21st chromosome, but all are unique in their abilities and needs.
Langdon Down had his name associated with the condition as he was one of the first doctors to study the condition. He called his patients "Mongoloid idiots" which gives you a picture of his time as well as how words become pejorative.
An idiot used to mean a working class person. Down found that if you treated people with T21 like people they lived much longer, meaningful lives. Through eugenics, this was lost and the de facto standard of care was institutionalization.
These institutions came to be horrid and the people there were treated badly. In Massachusetts they were called "state schools" but from an acquaintance who was a doctor at one and worked to shut it down, they were horrible and underfunded.
Alice grew up in a time when more work was done to have people with Down syndrome integrated into the community, but also during her life we're seeing the funding and supports dwindle.
This is extremely depressing and we are trying to both prepare for the worst case and find the sweet spot where Alice can live as independently as possible. She is happiest when her world isn't in flux and she has agency.
And we've helped her accomplish that. She lives in a condo with a roommate and who, with PCAs, help her with activities for daily living. For Alice, this means helping her make dinner, pack up lunches, go to the gym, and clean her space.
In the words of a friend of mine with a "typical" son of the same age, "she's more independent than [him]". I wish that her existence and independence wasn't so politically tenuous, but here we are.