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, California. 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.
We could not take Annika home, since she had been attacking her younger siblings and running away. There was only one child psych 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.
We cannot imagine our lives without Latham. Self-pity is far in our rearview mirror. Annika now talks about her two families: her Latham family and our family. It was a hard choice to remain in California with Annika at Latham, but her younger siblings are thriving here, and we visit Annika frequently and talk to her on the phone every day.
Jonah Steinhart, parent of Latham student Annika, shares his family’s journey to Latham…to safety and to the life she deserves
Annika still has her hard times, but most days she gives bubbly reports on school, outings, friends, and the amazing
Latham staff. Our family is the fortunate PWS family, so now we pay it forward. Heidi and I are working on getting California PWS services caught up with those in Massachusetts. When we meet with state politicians, fundraise, and flesh out a vision for a better life for individuals with PWS, Latham is the template; especially the Latham staff.
Your support of Latham Centers helps to attract and retain the best people. And without the best people, Latham cannot serve the exponentially complex special needs of those with PWS. The sustained success of Latham Centers is due in large part to the generosity of friends, family members, and community partners.
Please join me in giving to the best of your ability. Gifts of every size are meaningful and appreciated.
Annika’s submission for this year’s Latham t-shirt contest has the tagline “Latham is safe.” She is right on so many levels. Because of the people at Latham, Annika’s present and future are safe. She finally has the life she deserves. Latham shows us all what love looks like.