Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Sunday, March 13, 2011

OCDs, The Final Struggle?

Early Promise

In the soft bright promise
of a blossoming summer day,
the quiet cooing of mourning doves
and the echo of distant church bells
hanging in the morning air ~
I sip my coffee slowly and watch
my baby girl bend to touch
a drop of dew with her tiny rosebud lips,
and I realize there is still
something fresh and new in the world ...
yet I can’t help wondering
how the world will use it.
1993

OCD. Obsessive/Compulsive Disorder. Anxiety. Bad thoughts. Crazy dreams. Wash hands, wash hands, wash hands.... Check the doors. Are they locked? Already checked ‘em, but did I? Are they really locked? Anxiety. Check them again. Again. Again. Wash hands. Worry. Is that ok? Is it?? Volume 21. It isn’t right if it isn’t 21. Check the doors. Wash hands.

We are told this is because of a lack of serotonin in the brain. The first meds also had a sedative. She doesn’t need a sedative. Turned her into a zombie. New meds. Consulted with the pharmacist on this because the doctor tends to be stuck in his ways, like a broken record. If one medicine is good for one kid, it’s good for every kid, right? Every kid is unique? Heh.

The pharmacist finds us the right medicine, and one that doesn’t contain propylene glycol, which is important for Butterfly. Problem is, while there is no propylene glycol in the medicine itself, it’s in the ink used to stamp the gel capsule.

“It’s only a trace amount,” says the other pharmacist at the drug store.

“Only a little....” Famous last words. Would you give just a little peanut butter to someone who has a severe, anaphylactic reaction to peanuts? Ok, so the results aren’t as severe, but they’re still there. A LITTLE MATTERS! Cripe. And it’s not just a little once, it’s a little. every. day. Accumulative impact? But hey, let’s not strain our brain. *sigh*

I get clear gel caps from them and re-encapsulate each pill before giving it to Butterfly. Mom, the pill-jockey.

The pharmacist has created a file. This file goes to her “team,” a group of “experts” who function in a unit called, The Family Team. We are summoned to access time with an expert. We attend, but she never introduces herself properly, so I still have no idea who she is and what her expertise is supposed to be. We went because, who knows? Sometimes there are helpful surprises out there.

This is not one of them.

I’ll call her Karen.

Karen props a boot up onto a nearby chair, leans back and starts asking questions. Sometimes she nods. She also variously rolls or closes her eyes, pursing her lips tightly. As I tell Karen about Butterfly’s history of assessment, Karen interrupts to tell me that Butterfly’s psychologist is actually a psychomotrist (whatever that is). I shrug. I was told at the time that she was a psychologist. Ok. Yeah. Splitting hairs over some past expert’s title, that’s what this is all about. Um... silly me? I thought this was supposed to be about Butterfly. Apparently these little side issues are more important. We have to keep those experts in their proper place. Especially professional jealousies being what they are. Team? Funny.

It becomes apparent that Karen isn’t really listening to what we’re saying anyway. Karen has her own biases and opinions about things like psycholo-chomotrists and homeschooling. She is sure Butterfly has been confined to home and has no friends. Butterfly tells Karen how she goes out every Sunday with her dad and spends time with her friends, just not as much in winter, when weather and transportation make it harder to get out, as in summer, when the car is more available and there's more to do. I point out that Butterfly has her driver’s licence and is allowed to use the car to visit her friends. Butterfly tells Karen all about how she and a friend went to the fireworks and celebrations together on Canada Day.

It all seems to fly over Karen’s head. Karen is still sure Butterfly spends ALL her time confined to our house and has no friends. Butterfly and I look at each other. Butterfly repeats that she goes out every Sunday, usually to her uncle’s place, sometimes with a friend in tow, and that she sees her friends or talks to them on Facebook, regularly. Karen seizes the computer thing. She repeats her conviction that Butterfly doesn’t get out at all; she thinks Butterfly just talks to people on the electronic media. Butterfly and I look at each other again.

In the end, Butterfly is offered an opportunity to see a psychiatrist. This is not easy where we are. There is only one, and he doesn’t see people personally, only over the electronic media that a minute ago was so terribly confining for Butterfly. If she wants to see a shrink in person, we have to travel to the city. I am supposed to access Butterfly’s files from the psycholo~chomotrist who tested her and pass them along to Karen before any appointments can be made though. Apparently this team cannot access this file. Hmmmm.

I ask Karen if she knows anything about PANDAs. She shakes her head and offers a condescending smile. “It's such a small group. We just treat all OCD the same,” she explains. I ask Karen what the status of medicinal marijauna is where we are. I have heard that the THC in cannabis has been included in a medication called Marinol and that it can be helpful in treating OCD. Has she heard of this? “Have you tried it,” Karen asks Butterfly loudly, ignoring me. No, Butterfly hasn’t, and she says so, although, who knows what Karen heard? She's probably made up her mind that we're just lookin' to get high. *sigh*

Enough. Questions not satisfactorily answered, but Karen’s pre-conceived notions satisfied I’m sure, whether they really were or not. It’s shopping day. Butterfly and I leave the medical centre and head to the store to supply up.
Later, at home, I offer to confine Butterfly to her room with her electronic media, because we’re homeschoolers, and that’s what homeschoolers do. Apparently. Butterfly gets sarcasm. Usually, anyway. This time, for sure. The day was disappointing, for both of us. Well, shopping was ok.

Later, Butterfly says not to bother getting her files. She won’t see either psychiatrist anyway. She has her reasons and I respect them. And another door closes. Once again, we will struggle on together, with only help from friends ~ other parents of kids with challenges, or those with the challenges themselves. And our electronic media, which is sometimes a lot warmer and more helpful than some of the people in our community.

Is the "right" medicine helping? It may be. We'll give it time.

I ask yet again, who is really more socially inept? Those with social disabilities? Or those who cannot accept them with grace, humility and imagination? And this time, how about with compassion, knowledge, acceptance and understanding as well? Apparently all far too much to expect.

4 comments:

  1. GAH! Some "professionals" are anything but. I love your story-telling. I hate that the story has to be so difficult. ((hugs))

    ReplyDelete
  2. Thanks Brenda. It's just our world. Especially in a small town. ;p

    ReplyDelete
  3. So, I sit here reading your story thinking of the pediatrician who specialized in kids on the spectrum that I won't return to because he acted the same way as Karen. (Sorry for the horrible sentence).

    I like your storytelling, too. Good job!

    ReplyDelete
  4. Thanks Jenny. Yeah, it's unfortunate, but there are some practitioners in the medical community who just want to go home at the end of the day feeling superior to their patients, to feed their own insecurities and egos. I doubt if it ever occurs to these people to wonder if they've helped anyone. :/ Hang in there. :)

    ReplyDelete