decision making time
Jun 17th, 2008 by woodstone
Thanks for the prayers for my friend Christiana, I haven’t heard any more about how she’s doing… I’m hoping the experimental treatments they are starting will be effective enough to reschedule the bone marrow transplant.
The struggle she’s been facing for the past six months really puts things into perspective for me… It’s hard to fuss and whine about the normal frustrations and stress of life when some you know and care about is fighting so hard just to hold onto life itself…
She is truly a remarkable woman… She walked me through those first few months of M’s illness, I don’t know what I would have done without her. She’s funny, bold, brave, wise, open, accepting, loving and kind. I hope she doesn’t leave us too quickly… the world needs more people like her.
Loren-I don’t think you would have met her. She was involved with the FASD support group for awhile, but I don’t remember her coming to the house when you were there.
____________________________________________________________
So, I still need to post more wedding/Las Vegas pictures… and I will… but not right now.
Warning: This post is about the same old day treatment/inpatient what-to-do stuff I’ve written about countless times before. If you’re tired of hearing me talking myself into and out of things, and rationalizing (or maybe not) the decisions I’m trying to make for M, this is likely to put you to sleep. Sorry. Come back in a day or two and I’ll have more wedding pictures posted.
____________________________________________________________
I got a call yesterday from the day treatment program that M’s been on the waitlist for.
They have a spot for him.
I kind of wish they didn’t…
The only two reasons I put him on the waitlist were 1. to get the pdoc off my back about it and 2. because we needed to get him off the haldol and it appeared there was no way I could do that at home.
But since then I’ve decreased the haldol by almost 75% and am hoping to stop it in the next few weeks. So that is no longer an issue…
And he’s doing really well right now. The past week he’s been calm, connected, happy, it’s been wonderful. So there really isn’t a crisis going on (at least right now)… and the unit is supposed to be for kids and families “in crisis”.
I talked to the head of the unit today and wasn’t impressed. The last time I talked to her was about 8-9 years ago. She was running a social skills group then and she met with us before deciding whether or not to accept M into the group. After meeting him she decided that he wouldn’t be a good fit for her program and that was that. I wasn’t hugely impressed at her at that time, but it was a short appointment and we really didn’t have much chance to talk.
After talking to her today I’m very concerned about a couple of issues. The first involves her answer to me when I asked how they would adapt their program (they use a program designed for kids with Autism Spectrum Disorders, it’s called TEACCH, which stands for Treatment and Education of Autistic and Related Communication Handicapped Children) for M, who isn’t autistic (or communication handicapped), but is developmentally disabled by FASD. She answered that the program works with “all kids with special needs”.
How can that be? Behavioral interventions for kids with FASD look VERY different from interventions for kids with Autism.
Hmm…. a small red flag started waving in my brain.
Then she asked if M was in a “program” this summer (assuming he was a public school student). I explained that we homeschool, and school year round, although with a lighter schedule during the summer. She replied “Why did you take him out of school?”, in a challenging way… not a curious one.
Unfortunately, I stumbled around a bit as I answered her… I was totally unprepared to feel challenged in that way about homeschooling (at least during this first, brief, phone call!).
That’s about the time another larger red flag started flapping around wildly in my brain…
I really, really don’t want to end up in the position of having to defend our educational choices to a bunch of tdocs who don’t know us, and deal with the pressure of them believing M needs a “program”… that homeschool isn’t enough for him. That would be really hard on me…
Sigh… what to do.
One good thing that came from the conversation though, is that I’m understanding why all of a sudden the pdoc has started hammering away at me that M needs a “program”.
Lately, every time things get rough her only answer is that he needs a “program”. In the 6+ years she’s been his pdoc I never once heard anything from her about his need for a program until about a month ago. During the past month she’s mentioned it at least 4-5 times. She’s brought it up so often that I got snappy with her about it… I was tired of her answer to everything always being a “program” and let her know that. (She apologised, but has continued to keep bringing it up.)
Honestly though, the homeschool issue could possibly be taken care of fairly easily… hopefully just by clearly stating, up front, that we are NOT interested in finding a program, that we believe homeschooling is the best option for our children, and if that is a problem for them they don’t have to admit M.
And M is probably flexible enough right now to cope with a structure (the TEACCH model) that isn’t the best fit for him. It does seem a little strange though that he (coming in as the child in need of this level of support!) would need to accomodate them, rather than things being the other way around…
The bottom line for me though, is that I don’t think this is going to be helpful to M. I talked to K about it. Her shiny new psych degree, combined with her experience working with kids with mental illness, developmental delays, and behavioral problems, gives her a unique insight sometimes. She is strongly against M going into the NSCU. She sees the issue not of him having behavioral problems, but having a very serious mental illness that has been resistant to treatment. I agree with her take on the situation, which brings me back to this being a medication issue, not an issue that requires behavioral intervention.
I found the following paragraph while I was reading through an article this morning… It looks like treatment resistant sz is more common than I thought.
“The issue of treatment resistance [Treatment Resistant Schizophrenia] is of particular importance for practicing psychiatrists, because 10% to 30% of patients have little or no response to antipsychotic medications, and up to an additional 30% of patients have only partial responses to treatment.”
Hmm… so why do we keep coming back to this as a behavioral or environmental issue?
Anyway, the NSCU intake person is working on finding out if our insurance will even pay for day treatment, and we have a tour scheduled for tomorrow afternoon. The pdoc is gone (a family emergency came up) but I’m hoping to talk to her before I have to make a decision.
It sounds to me as if all the docs are trying to shove M into something that they are familiar with. From all that you’ve shared it seems that M doesn’t fit any mold that they already have…he is totally different, totally unknown to them. They seem to think that once they get him doing what they’re used to doing that he will be just fine (not all that unlike Kim’s child.)
While they may have their years of working with other children under their belts, you have years of working with your child under yours. You know him and know what works for him. I just don’t understand why they don’t trust you.
Note back to Renee: The pdoc seems to trust me, she says she does and has never insisted on an inpatient stay… trusting me to care for M at home, even during times when it put her at risk professionally. I don’t think it’s a matter of trust as much as her just not knowing what to do next. (So let’s do what’s familiar… day treatment!)
I think mental health professionals aren’t used to thinking outside the box, and kids like M, who have both FASD and treatment resistant sz, are extremely rare…. so you’re right, people don’t know what to do with him.
I distrust anyone who says their program works for *every child with “special needs”* “Special needs” is a phrase that doesn’t mean anything anyway. It’s just a polite phrase we use to fill in a gap in a sentence when we don’t feel like explaining the particulars. KWIM? When a professional says something like that, I read it to mean “this is the only tool we have so we’ll make your child fit our program.” The old Procrustean approach.
Never mind my rubbish opinions, though. *LOL* The bottom line is I trust your instincts completely, and I also trust K’s instincts. Good luck with this decision. HUGS
You know, I’ve been reading your blog for quite a while now and have been very impressed with your knowledge and care for your children. I think that you should pay attention to all those red flags waving around and trust your instincts. I think you’re right about professionals - they like to give cookie cutter responses to problems, especially when they are uncertain as to how to proceed.
You seem pretty sure that M’s problem isn’t behavioural, rather it is due to his treatment resistant schizophrenia. Then leave the behavioural approaches alone and continue to try and treat the disease.
Don’t give in about the homeschooling. Professionals don’t like it because they don’t have as much control over what happens at home, and they have to work harder to maintain communication and follow up with progress. It has nothing to do with what’s best for your child. If they get too insistent, you can always offer to do the program at home where you can tweak it to what will work best for M.
BTW - a while ago I passed on an article to you from Discover magazine about a new treatment for schizophrenia. Did anything positive ever come of it?
Keeping you and your family in my prayers…