I just finished the chapter describing Schuyler's condition (the beginning paragraphs of which inspired my last entry), and in the process, I learned a few things. Part of that came from research I did, both online and with the help of Dana, who remains one of my best friends even from Connecticut. I also wrote to the two top experts on Schuyler's disorder: Dr. William Dobyns, who saw Schuyler in Chicago back in January 2005, and the Christopher Walsh Laboratory at Harvard. They both wrote me back with a ton of information, much of which appears to be in English but is clearly written for someone smarter than myself.
I have to admit that it had been a while since I'd done any serious reading on the subject, so in just the past week I've learned some interesting things about CBPS, the most obvious being that it is apparently no longer called CBPS. I'm not sure why the name has changed, although I suspect it is to bring it inline with the naming scheme for all the other forms of polymicrogyria. So goodbye, Congenital Bilateral Perisylvian Syndrome, and not so nice to meet you, Bilateral Perisylvian Polymicrogyria.
When Schuyler was first diagnosed, CBPS (BPP, I have to make myself use that now) was believed to be genetic in cause, which was the reason we made the sad decision not to have any more kids. Now it is believed to have a number of causes, including poor blood supply during early pregnancy and also the mis-development of blood vessels. Interestingly, one of the polymicrogyria genes appears to be a dyslexia gene as well.
I'm sure there's more that I haven't gotten to yet; the hefty texts that Dr. Dobyns and Dr. Walsh's lab sent would be daunting enough on size alone, even if they weren't written in Martian. I'll share anything else that jumps out.
This past Saturday, while having what was eventually to become one of the very worst days I have ever had, I very accidentally stumbled across something that sounded interesting and of possible interest to Schuyler: a therapy process called Interactive Metronome. And when I say I found it accidentally, I'm not kidding. The company was having a conference in the room next door to a wedding reception I was shooting, and I walked into it by mistake.
Which just goes to show you that 1) possibilities are everywhere if you just open your eyes to them, and 2) you can learn important things on even the worst days of your life. Which I suppose was pretty fucking true anyway.
23 comments:
Thank you for sharing this. I needed to read those words tonight.
You long ago made me a believer in the Karmic Boomerang.
Perhaps this is a positive result of the good Karma you generate with your writing.
So, whether you will find this comment inspiring, resent it, or not really be affected one way or another, I know not. But...
Your experience stumbling upon something that may be lifechanging for your daughter (and therefore for you as well) reminds me of when I stumbled upon the book Conversations with God. I actually had to stumble across that book 7 or 8 times over the course of 5 years before I finally actually read it (the last time it literally was placed in my hands since I didn't pay attention the first 7 times), and it was absolutely lifechaning.
I'm not saying you should read said book (unless of course you want to, it is a good book).
But one of the ideas in the book is that God speaks to everyone, all the time, but we aren't always paying attention. I find that the more I just sit back and let God talk, the more I just "stumble onto" things that make my life easier and better.
Maybe this was one of those times God was talking to you. Maybe he/she/it has his/her/its reasons for Schuyler's monster, and this was a message for you? Maybe God's speaking through me right now to you?
I don't know, just thinking, really. I'm really not one of those religious nuts (not religious in all, in fact) but I do believe God is speaking to all of us all the time, and it wasn't an "accident" that you stumbled into the wrong room.
The course certainly sounds interesting. giving her something to aim towards at least, and an accurate measurement of where she's at. Do keep us posted, the technique's at least in line with what I vaguely recall from psych.
I've heard of Interactive Metronome but never seen it in use. Hopefully with some of my connections I can dig something up for you. Sounds like everything is going well for you!!! Looking forward to hearing more
Rob,
I really don't want to rain on your parade, BUT please be very careful before adopting any therapy method you found by accident in a hotel --- I looked at their website and was not able to find any "real" research to demonstate effectiveness of this method, only testimonials of parents and persons who run simimlar clinics for other disabilities. In fact, I am going to check today, but I think this is a program I have read about as being questionable. If you are looking for effective treatment, you really should stick with the doctors/professionals who diagnose--- should look for clear clinical trials that use proven research methods -- these are usually found in special education, medical, and other professional journals. Beware the snakeoil salemen.I have become very attached to your family and story even through I am 1000s miles away. I will check around the university today to see what I can find out about this program. AND I am off to DC this weekend to speak at a special ed conference where lots of people smarter than me will also be speaking and will ask around there. If it has a proven track record I can find out. But in my 40 years of teaching I have seen too many parents go looking for a miricle only to end up with empty pockets. Let's keep our fingers crossed.
Damn, Rob, I had just finally learned Congenital Bilateral Perisylvian Syndrome. Stop making me learn big words.
That is fascinating. I'm so glad you're finding answers that can help your family. It is amazing how things can just pop up when you most need them.
I'm very interested in the therapy, and have bookmarked it to look at later. Thanks for sharing
Almost every treatment we have used that has HELPED our daughter has not been FDA approved.
If I had stuck with the doctors/professionals who diagnose, with all their clinical trials and manipulated research,not to mention their vested interest in the pharmaceutical industry, we would be miles behind at this point.
You don't need to be handed information by people "smarter" than you. If it's a sham, you'll know it. YOU know what is best for your daughter.
Amen.
You know, everyone thinks they have abook in their head, and it
s just got to come out, and everyone will be fascinated to read about their lives, but I have no doubt that your book is going to be this generation's "Karen". And, because of it, 50 years from now, people are going to have a very different reaction to the concept of people with brain abnormalities.
I may not be the first to comment thusly, so apologies to others if I'm echoing...
I'm beginning to think there really are no coincidences. If you walked into something by accident, then it proved to be really useful, isn't that something that was connected to you in some way?
So there's a chance that it might not be genetic in cause? This is obviously of extreme interest to D and I. I just haven't been able to find any studies on adults with BPP (damn, I had just gotten used to the CBPS mouthfull of words myself) so if anything pops out in the material you've got please share. The more you write about your progress with Schuyler's Monster, the more I can't wait to read it. You're doing the world a huge service by taking the monster out of the closet and by telling Schuyler's story, those with similar monsters won't be as isolated and misunderstood. The researchers may have given the monster a name but you and Schuyler have given us an understanding that wasn't there before. I'm usually pretty good with words but there really doesn't seem to be any good ones for expressing exactly how much that means to Rymer, D and myself.
Different forms of polymicrogyria seem to have a variety of possible causes, although it looks like BPP is still largely considered to have genetic origins.
I agree with Michelle and Fifi. I don't believe in accidents. Just today I was blogging about far infrared treatment for cancer, which one friend of mine likens to snake oil. But my friends who are naturopaths and practitioners of traditional Chinese medicine don't blink an eye at its effectiveness. I read through the scientific explanation and I get it.
Then tonight I saw Brilliant! ..the play about Nikola Tesla. He was ridiculed, laughed at, had finaciers pull out of projects. Even Edison called his alternating current "impractical." Tesla knew one day we would talk through the air using waves instead of wires. He said one day wars would be fought by robots using death rays. They laughed at him.
Who's laughing now?
K
Wow, for days and days I was back at the beginning of oct, and the political commentary, and then today, find like 4 posts in a row. It was like christmas!
And you STILL deny God's compassion and love...
If it's a sham, you'll know it. YOU know what is best for your daughter.
You aren't completely serious about this, are you? Do you have any idea how many good and caring people are hoodwinked by stupid and dangerous shams every day?
How many people, desperate for cures to fatal diseases, spend money on pure crap?
It is one thing to be open-minded, and quite another to think you will somehow, magically, know a sham from a real therapy, without real data.
Please don't tell me this blog is read by magical-thinking, hold-my-hand-and-say-you-believe-in-fairies types. Nothing is more tragic, or clearer proof that the whole anti-intellectual, anti-science and knowledge movement (inspired by the great patron St. George of the Bush of No Light) is everywhere.
And a second comment. Nikola Tesla was mentioned above. "They" (whomever they are) may have "laughed" at him, but Tesla was a scientist. He used scientific principles, scientific methods, and data. He was not a snake oil salesman. Please do not paint him as such.
And you STILL deny God's compassion and love...
Pretty much, yeah.
There is a releasing of butterflies this weekend in Grapevine
And you STILL deny God's compassion and love...
Pretty much, yeah.
But the Flying Spaghetti Monster still loves you.
my child was diagnosed with bpp a few years ago, and i always wondered whether it was the same monster as schuyler's - he is affected in different ways,but you still manage to see into my soul and voice the feelings i can't. sending good vibes and hugs for all of you to save for when you need them just for the record, the god thing? you're right, i'd rather put my faith in the strength and beauty of my child xx
Aw, I'm so glad you're still friends with Dana. I found you through her and even though she never writes anymore, I have such affection for you both. My first favourite blogs! Keep up the great writing, little buddy.
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