Almost five years ago this family began a quest with our daughter, Myriam. We thought we were in search of a cure but what we got was a diagnosis. We went to many doctors, psychiatrists and therapists. We sought the best in their fields or at least the best that we could afford. KU Medical came out and evaluated our child and our parenting and after months of waiting they delivered a packet to us, told us that our child was on the spectrum and then dropped us like a hot rock.
Dashed were our dreams of help and guidance. The only times they have contacted us since has been to encourage us to donate our DNA for study, sign us up for drug and behavioral trials, and to ask for donations. Not one of the doctors on that panel offered us a follow up visit or a piece of advice how to proceed.
Luckily, our school district picked up KU's slack and Myriam is doing well.
Now, almost five years later, I'm on the phone with the hospital that I had pinned so much hope but this time for a different child: a child that needs far more help than Myriam ever did. Unfortunately, within five minutes of beginning this conversation I'm already back in that conference room watching everyone abandon our family.
"Have you sought help from your local mental health facility? With your current diagnosis, you should be eligible for assistance from them."
"I will look their number up for you. Hmm.... I don't seem to have a listing for them. Do you have access to a computer so that you can look the number up yourself?"
"What EXACTLY do you expect for us to do for you? I understand that you need help. What does that mean to you?"
You know the definition of insanity, right?