I'm starting to feel a little like Alice in wonderland.
I have somehow stumbled into a place where reality doesn't make sense. A place where sometimes trying to make things better ("drink me, the bottle said") makes things worse, or at least more complicated, for a time.
The strange thing about living in Wonderland is that the longer you are here, the easier it is to lose track of how bizarre the reality of this world is... and how different it is from the "real" world.
Confused yet? (am I starting to sound like the Mad Hatter or the March Hare?)
I guess I'd better back up...
A few weeks ago I was
ranting about the lack of services for M. He's developmentally delayed and seriously mentally ill. He hasn't been receiving DD services because the last time his IQ was tested it was too high. He hasn't been receiving mental health services (through the state) because the hoops they required us to jump through would have been damaging for M. (And it wouldn't be a good fit anyway, because he's not "just" mentally ill...he is also very delayed developmentally!)
So... I decided to work on getting him eligible for DD services. For that I would need a more current evaluation. The pdoc wanted a neuropsych eval. done, but after spending days calling neuropsychologists and finding 1.) most weren't willing to try to do extensive testing with a psychotic 14 year old and 2.) the ones that
were willing to do it we couldn't afford, I decided to settle for just the basics.
I called a developmental neuropsychologist I used to know professionally and asked if she would do me a favor and just do an IQ test and the Vineland (an adaptive behavioral scale) with M.
She said yes, she could see him the next day and would even write up a report that I could take home with me. (And it would only set me back a few hundred bucks... a bargain compared to the $3,000. neuropsych eval!)
In Colorado, to qualify for DD services the person's IQ must be below 70. I thought it was unlikely M's IQ would be that low... before the schizophrenia it had been in the "high average" range. I knew it had dropped during the past 5 years of psychosis, but I guessed only by 10-15 points or so.
He scored well below 70.
The Vineland scores were even worse (for those of you who may be familiar with the Vineland, the overall behavior composite was 29).
Talk about not knowing how to feel... Relief on one hand... he should have no trouble qualifying for DD services now. Maybe we'll finally get some support! But deep sadness on the other hand.. that he had lost so much.
The day after the testing I call our CCB (community centered board, the organization we must go through to receive DD services) to get an intake packet. I spoke to the intake coordinator for a long time, and after hearing M's scores she agreed that he really more support. She said that I'd need to prove that his cognitive delays are connected to his fetal alcohol and not his mental illness. (Hmm... and how do I do that?) I hate to, but I think I'll have to go back to the neuropsychologist who did the testing and see how far out on a limb she's willing to go in her report...
Once I get the eligibility packet is completed and returned it will go before the eligibility committee who will determine whether or not M qualifies.
If he qualifies we can start the process to receive services through the CCB... The only catch?
The waiting list for any services at all through the CCB is about 5 years.
Yes, that's right. I spent several weeks figuring out how to get the necessary testing done, and several hundred dollars on the testing itself, just to (hopefully!) get on a waiting list.
I'm think it's time to start looking for another bottle to drink from, maybe I can change the bizarre reality of this system.

cu