Just when you think you've heard it all.....

[laurasnowbird]

I had to wait a couple of days to even post this, because I'm still livid.

We are continuing to have problems with Ethan pulling his hair. I cut it short, thinking it would stop him from twisting it, and instead he started pulling it OUT!!!

So, we think perhaps there is some anxiety at work here, and after talking to a dear friend who is a psychiatrist (but too close to Ethan to treat him) I called University of Michigan to schedule an eval with the psych department. I had a REALLY weird conversation with the scheduler, who did everything in her power to dissuade me, but then finally put us on the waiting list. This after a bizarre conversation where she said Ethan wasn't a patient there (he's been going since he was 8 months old).

A couple of hours later she calls me back to say they are taking him off the list because they don't have anyone who can help him with trichotillomania. (the hair pulling thingJ). I was flabbergasted, but completing a transaction at a store when she called, so I took down the number of some clinic at Henry Ford that she said I could call.

After a couple of hours, and a few frantic text messages to my psychiatrist friend later, I called UM back and said that I have NO IDEA if he has trichotillomania, (nor do they) that I believe he has an anxiety issue and want an eval. Then they went into a song and dance about "the provider said" they don't have the expertise to treat him. WTF? They haven't even SEEN him, how would they know?

So we cut to the chase, and she finally says "We can't see him because he has Down Syndrome". I d*mn near blew a gasket. I asked her if she had any idea how discriminatory her statement was, and she kept repeating herself and insisting they didn't have the expertise to see him. So what the heck is this, then?

www.psych.med.umich.edu/care/child/dd.asp

Certainly looks to me like a clinic that could help. I asked her who she was relaying that message for - and it was someone named Aileen Prout. Now mind you, this all supposedly started with this person saying they didn't have anyone who could help him with trichotillomania. Oddly enough, look at Aileen Prout's webpage at UM. She's toward the bottom, but look at her areas of interest.

www.psych.med.umich.edu/child/staff.asp

But the BEST part of this whole screwed up situation is this: this person who supposedly said they can't help Ethan, this Aileen Prout, is a SOCIAL WORKER! REALLY? How in the world is a social worker qualified to tell us what a psychiatrist can do for my child?

I insisted that they take my name and number and have someone from the clinic call me. That was Tuesday afternoon, and I've heard nothing yet. But you can bet that the hospital CEO, hospital board, and the medical director of that program are going to hear from ME, by certified letter, no less.

Still fuming in Michigan.......

[Chris too]

I surely would not want to be that CEO, that med director, nor even on the board at that hospital with you, bold and wonderful you, coming for their throats.

Get 'em, Snow Bird!

[Jackie]

how weird....go for it!!!!!

[wrblack]

Give 'em hell, Snowbird!! Do ya think they'd give permission to record next phone conversation? Think I know a couple of lawyers who would be drooling over that. -- Bob

[Emilysmom]

That's the strangest thing ever, Laura! ! ! I totally understand why you're upset. Shouldn't be so hard to get a little help for Ethan!!
Eager to hear how this turns out.

[mg12061]

OMG, I can't believe someone would actually say that! Now I think I've heard it all too. Keep us posted.
Mary Grace

[Googsmom aka Jennifer]

I agree w/ Chris and Bob. I'd be soooooooo mad! Keep us updated and let us know if we have to scrounge up some bail money

[kg91207]

Ok, as a social worker myself, and one who worked with children with I/DD for 5 years, how can she say that??? First of all, she hasn't even met him yet, let along did an intake, how can she say they can't work with him?? I HATE it when people think DS means they can't work with them. Yeah, that extra chromosome changes things a bit, but not really!!! Ok, I am so mad I can't even get my thoughts out clearly!!!

[laurasnowbird]

So, it appears that someone at U of M has some sense.

I got a call back from UM several days later, and they said they were sorry about the problems we had, and that they had someone who wanted to take Ethan's case. The practitioner is Judith Coucouvanis, whom I know little about, but it's a start. I was told she's a nurse practitioner, and I looked her up and it looks like she might be pretty skilled with kids with social issues. She has a pretty interesting book being sold on Amazon.

Of course, that's not the end of the story. I asked the young lady who called me at whose direction she was making the call. She said her boss told her to call. I got her boss' name, told her I appreciated the phone call (she was very polite and apologetic) but that I expected to hear from someone in a position of authority at the clinic. I explained that the person I spoke with originally was entirely too comfortable making her discriminatory statements, even when challenged, for me to believe I was the only victim of that behavior, that I believe there's an issue, and I won't be satisfied until I'm certain it has been addressed.

She was again very appropriate and apologetic, said she understood completely, and she'd pass the message along. Her boss called back the very same afternoon - I happened to be out when she called, and haven't had a moment to call back.

Please keep the Uno bus handy, LOL!