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 27, 2011

April is Autism Awareness Month...

...and already the big fray has begun! Fray? Oh yeah. I guess it’s inevitable. Here come the arguments about how to raise awareness or whether, indeed, mere awareness is enough. Do we go gently into this, or do we pound our fists and demand attention?


Um, here’s the thing. People. You know, as in one of my fave remarks: “People, what a species.” Yeah. People. Right.

Most of these two-legged critters are roaming around out there quite unaware of anything at all. They are just going through the motions of life, doing the same things day after day, taking comfort in the familiar ~ that repeated pattern of daily routine. They aren’t aware of the guy next to them at all, never mind if said guy has some disability. They aren’t aware of why they’re here, the importance of what they do day in and day out ~ or the lack of its importance. Most are just about getting enough money to live. They wake up with their double-doubles to barely function through the day, then they dull the pain of having to do something they hate to get that money by numbing themselves at their local tavern/racetrack/casino, or slouched in front of the tv... or whatever.


Many of these people say they’re this religion or that, but never meet with others of like faith or study what their beliefs are about. They never educate themselves about what their own religion even is. They really only know what it’s called and that it was what mom and dad believed and what most of the people around them supposedly are. They think all other religions are bad. Not just different. Bad. But they don’t really know anything about those religions either. Polls were done by reliable sources. They came to the conclusion that many Christians, for instance, know very little about their own religion, much less that Jesus is an oft mentioned prophet in the Koran, the writings of another faith.

Awareness? We have an obesity epidemic in North America right now, with all the health problems that entails, such as heart disease, cancers, diabetes, etc. There are all kinds of theories about this, but mostly it’s happening because of over-processed, over-refined foods in our homes, and too many visits to easy, convenient, cheap, fast-food joints where the “meat” may or may not be meat, the chicken nuggets are nuggets of fat, indeed, all the animal products have been raised on farm “factories” where the animals are raised inhumanely on hormones and antibiotics that then enter us via what we eat... Hmmm, lemme see: fat, hormones, antibiotics, processed, bleach and other chemicals, and we call it food? And many won’t stop eating this way until they are too sick or too fat to sleep-walk through their day as usual.

Awareness?? Last week I spoke to a registered nurse about my daughter’s OCDs. We talked a little about behaviour, both Butterfly’s and other people’s... you know, those who lack awareness. When Butterfly wouldn’t talk to her on the phone and wanted her to talk with me instead, the woman asked if she was always like that. I said, “yes, she’s Aspie.” Now, this woman is someone who screens potential patients for a local psychiatrist, but she needed more explanation about how most Aspies would react to the social pressure of talking to a stranger on the phone. I had to explain how Aspies “react” to many social situations, because she was surprised that Butterfly couldn’t figure things out instantly and respond accordingly. Um... if she could do that, she wouldn’t be Aspie, would she? So I raised the RN’s awareness. I explained things because someone screening people with social disabilities ought to know at least a little something about them.


Even some people in the autism community respected for writing about their experiences with autism come out with things like, “negativity is a one-way street” because they apparently aren’t into the reality of the ying/yang of all things. One can ignore the negativity if they can’t handle it, but that doesn’t mean it isn’t there. There are pros and cons to all things, and acknowledging the negative is the first step in dealing with it. There is always a balance, and finding it is key. There are no philosophical one-way streets, only one-way minds.

Awareness? Some people think settling for just awareness isn’t enough. They want understanding and acceptance too. It’s a nice thought, and ultimately a great goal. But it’s only wise to walk before we try to run. Seems to me that inspiring awareness in the medical community is a good first step; in the community is the second step. If you plant that seed in your own back yard and nurture it, you will have accomplished more than demanding that others do things your way. When the medical workers in your community become aware, when the clerk in the store gets it, when your neighbour is aware, then you’ve done something, because once they’re aware, that’s where acceptance and understanding begins. Yes, there will be negative experiences. Don’t ignore them; speak of them, without anger if possible. This will raise awareness.

Yes, awareness.

I know, some people think instant gratification takes too long. But being impatient, disagreeable and unpleasant won't get us there faster. Just as insulting people who’ve had a different experience by telling them they didn’t, won't change their story. They will only be insulted. Does that accomplish something? (Respect cuts both ways. You’re going to get back just what you give.) Every journey begins with a single step, every road has obstacles, and everyone carries a burden. Persistence, patience, tenacity... that’s what gets the thing done. Struggle for awareness. When you have that, nurture it into something more, when you can. The seed always grows into a healthy, leafy plant if it gets what it needs. But healthy growth takes time, care and patience.

Awareness alone is a tall order in this world of half-conscious, sleep-walking, poorly-nourished, follow-the-crowd, full-of-ourselves human beings. But we can get there if we keep going and if we help and respect each other. We’re all just people after all.

And you know ~ people, what a species.

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.

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.