Annika’s Story
After the intercom alert, the squeak of shoes, and the man’s anguished screams, the psych ward fell silent. I lay in a chair-bed combo in a small exam room, my eyes fixed on the door. The handle had no lock, and the slit of a window afforded a clear sightline out of the room - and into it.
This was an adult crisis ward for all of Marin County, CA. They took everyone, from the suicidal to the schizophrenic, the homeowner to the homeless. It was a risky place to spend the night.
Especially because beside me lay my 9-year-old daughter Annika.
But I fought to stay that terrifying night. I had no choice. There was nowhere else for us to go, because Annika has Prader-Willi syndrome (PWS). My wife Heidi and I were desperate to force our insurance company to approve her for the Pittsburgh Children’s Institute’s PWS inpatient program. From there, we hoped the Children’s Institute would help us force our school district to become the first in California to place a student at Latham Centers, the only residential school in the country for kids with PWS.
We could not take Annika home, since she had been attacking her younger siblings and running away. There was only one child pscyh ward in the San Francisco Bay Area that would take a child so young, and it had no beds available. Thus, the absurdity of the adult ward.
What do you do when there seems to be no place in this world for your child? When you feel completely adrift, desperate for your child to have just one friend, just one employee at her school who understands PWS, just a modicum of a life? Some of us bury ourselves in crippling self-pity.
Some of us, eventually, fight. And what a fight it is.
Our risky plan worked; the insurance company approved Annika for Pittsburgh, which recommended Latham, which caused our school district to cave after a four-year fight. Annika finally had a home at Latham, and our family finally had peace.
Ours is the fortunate family to have found specialized residential care for our loved one with PWS. Most families are not so lucky. And we will again be among them when Annika ages out of Latham Centers and into adult housing.
We would love to be able to bring Annika home to California as an adult. But we can only do that if California catches up to states like Massachusetts and begins providing specialized housing for people like our daughter.
PWHC may one day allow Annika a joyous return to California. Above all, it could prevent many, many other families from having to send their loved ones out of state just to get the residential care they need.
-Jonah Steinhart