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.

Tuesday, September 4, 2012

Epilogue??

And finally...

I wanted to end this blog on a positive note. Butterfly is 20 years old now, and her struggle has become that classic struggle for independence.

As for her symptoms, they are only part of that story. Her OCDs remain, but off medication, the tics are gone. She is gradually learning to control her OCDs, rather than them controlling her, although there is still an ongoing journey with this. . She has also altered her diet ... a few times. She noticed improvement after going gluten-free, the she noticed that her energy went down after consuming meat, so she stopped eating it. She embarked on a gluten-free vegetarian diet, and is now gluten-free, GMO-free, vegan. It has all made a positive difference. And along the way, Bud has taken great joy in discovering how to cook great meals for herself (and sometimes for me too) on this diet. She has a real talent in the kitchen.... well, except for the cleaning up part. ;o)

Butterfly still has struggles ahead, as we all do. It’s just that hers include a syndrome that really isn’t all that well understood, medically or socially. Medically, its causes, management, and possible cures all remain matters of debate. Socially, all we need is a cure for ignorance. I don’t see a lot of light at the end of either tunnel, frankly. Let’s face it: it’s rather difficult to get people to work together to common purpose, and since there are vested interests that resist enlightenment, I’m not looking for medical answers anytime soon. Too many people are looking for a smoking gun while standing in a minefield. And too many people want to lump all people with autism into some neat, tidy box, when the truth is, when you’ve met one person with autism, you’ve met ONE person with autism. And then, there are too many people who just don’t have a clue, and who think it’s ok to have an opinion anyway. I’ve asked it before, and I’ll ask it one more time: who is really more socially inept... those with social disabilities, or those who can’t accept them as they are, with grace, humility, and imagination? I know the answer. I’m guessing a lot of people may not.

Butterfly has given a lot of thought to her future. There are several avenues of interest she wants to pursue. Right now, she has settled on photo-journalism. She has a lot of work to do, but she is a pretty good photographer already, and her writing... well, it’s direct and to the point, and because of one of her OCDs, it’s also grammatically correct in all ways. ;o) Her talents encourage me to believe she will ultimately do just fine.  She is working, part time, in retail right now.  It's another beginning.

Doctors? Well, I have another doctor now and he seems like a good man. Not a touch of arrogance, so far anyway. I’ve had enough of that, thank you. Anyway, he will be our family doctor if all works out. Bud will not be needing him for much though. She has trust issues, and will all her life, I suspect. There are a few reasons for this, if you’ve read preceding posts, but overall I think it is largely because protecting their arrogance is more important to the general medical establishment here, than helping patients, and Butterfly knows this. (This new doctor is from another part of the world, and this gives me hope.) Butterfly continues to seek out alternative supplements that will help her focus as she makes her way out into the world.

And so, unless there is great and unexpected news about some cure for autism, or something almost as meaningful happens, it is unlikely that I will be adding more to this blog. (Never say never.) I genuinely hope it has helped a few people along their path, with ideas, information, encouragement, or at least empathy. Though the struggles of this family continue, they have pretty much just become a part of our lives and drift by day-to-day as part of just what is. I have to turn my attention now to other matters... to distractions that help us reach past autism and derive some pleasure, and perhaps some other purpose out of life.

If you ask me what is the most important thing I’ve learned from all this, I would have to say it’s this: trust your own instincts. Believe your gut. Listen to that inner voice, and do not allow yourself to be jerked around by the ill-formed, the lazy, the unknowing, or even by the well-meaning. Do your own research and trust your own instincts in all things.

And so, for all of you struggling with the thing that is autism, I wish you love, light and all bright blessings, along with patience and strength that you never knew you had.


Wendy

Friday, April 27, 2012

And so.....

When I was a younger woman working at a college, one of the professors asked me, a little facetiously, what I wanted to be when I grew up. I thought about it a minute, then replied, also a little facetiously, “a curmudgeon.” Of course, I had no way of knowing just how prophetic that answer would be.

It is 2012 and there is an election going on in the States that involves a lot of ignorant, intolerant and even hateful rhetoric from the party on the right. This has apparently given license for all kinds of intolerance, bigotry, unharnessed anger, homophobia, and even unbridled hate, to come out of the woodwork on today’s social media. This even stands out in a cold world that worships money and seems to have little kindness and compassion left in it anymore.

We gave a doctor one more try, and this time the doctor we saw was a gracious and gentle man. We got an appointment with this specialist with the help of his caring and generous assistant. Things were looking up. The doctor ordered an MRI for Butterfly, to have a closer look at some scaring and calcification on the dura around her brain. He assured her she would not have to have dyes put into her if she didn’t want.  Butterfly didn't want.  She has a fear of needles.  Sure, it's an irrational fear, but fear is fear... something that is apparently hard to understand.

Come appointment day, we headed to the big smoke to both see the doctor again, and to have this MRI done. We left the doctor’s office shortly after noon and headed to the Imaging department. There was a mix up about the appointment time, so we thought we didn’t have time to do anything else but wait. Turned out we could have gone to at least explore nearby Kensington Street, but we didn’t know that at the time. Butterfly was moody, nervous and antsy. It wasn’t a test she was exactly looking forward to. I enquired about the time when what I thought was our appointment time came and went. This set into motion an unhappy chain of events.

Nurse Comeuppance came out to get Butterfly. I went too. The nurse clearly wanted to put Butterfly in her place for rushing them, so she went over Butterfly’s answers on the questionnaire she’d filled out with tedious slowness. Butterfly tried to cut to the chase, but the nurse would have none of it. She was going to singlehandedly teach Butterfly patience. Then the nurse informed Butterfly she would be given dyes. Butterfly protested that the doctor had said she wouldn’t have to have any dyes. Nurse Comeuppance very slowly (with exaggerated patience) explained that our doctor was not in charge there, the radiologist was, and he would want to use dyes. Butterfly was panicking. In fact, her panic was very plain to me. I explained to the nurse that Butterfly has autism, hoping it would help stop this torture. It didn’t. If anything, it made her tone even more condescending. It apparently did not occur to this nurse that Butterfly was there to literally have her head examined, and there might be an actual reason for that.  Nor was this nurse willing to make any allowances for FEAR.

Longer story shorter: her panic at a crescendo as the nurse insisted on repeating everything again, Butterfly ran screaming from the unit. I had a heck of a time finding her. Even as I searched in this rather large, big city hospital, she was, she told me later, sitting in a second floor doorway hyperventilating. When I found her, I told her we could just go home. But she wanted her MRI. She just wanted a different nurse. Again, longer story..... the second nurse was angry on behalf of the first one, because apparently in this hospital, the nurse’s egos and their need to teach impatient people a lesson, is just way more important than anything the patient might need. Butterfly ran screaming obscenities this time.  She told me later that she hadn't meant to run the first time... it just happened.  But the second time, she was just mad.

You know, that little trip to the city cost at least $120. out of my meagre grocery budget, and a day of our time, not to even mention the emotional cost, all for a lovely chat with the doctor, and a very bad adventure with some insensitive, self-important nurses. I give up. I accept that we are living in an ignorant, intolerant age and there is no practical help or compassion to be had from modern medicine for my daughter.

Butterfly continues making adjustments to her diet. She has found animal protein makes her feel sluggish. She is now gluten-free vegan. (photo - her GF, vegan pizza)  She will continue to struggle. She will continue to do so with little support. There are a million different worthy “causes” in our world, from autism awareness, including insensitive CAS agencies stealing children from their parents, to so many other health and wellness emergencies amongst our children, as well as obesity, heart disease, diabetes and more amongst both the children and the aging general population. And this is not to mention terror, crime and poverty. It's a troubled world, and I have tried to help whenever I can.  But I have nothing more to give ~ especially when the requests for help have started coming in the form of accusatory, judgmental, demanding posts.  Don't need it.  It's simple: ask nicely, or don't ask. What little strength I have left is reserved for my daughter, and for those few friends and family who are caring, and who “get it.” I am going to leave the rest of the world alone for awhile. I'm feeling at this point, as if I will never recover any of my former strength. I'm not getting any younger and there have been too many disappointments, setbacks, and heartbreaks... entirely too much water under my proverbial bridge, eroding and weakening my supports. I am becoming that curmudgeon I imagined in my cynical youth.

People, what a species.

Wednesday, June 15, 2011

Doctor Dearest

Butterfly had an appointment with her doctor on June 8th. He hasn't been a lot of help to us, but there was a test we'd never received the results of, so we went. The following letter is a result of that visit. I'm putting it here in dedication to all parents of autism and their kids, who've had a rough time accessing adequate health care, and indeed for anyone who's been a victim of bad medicine from a bad doctor.

***

Dear Doctor,

It took some coaxing to get Butterfly to keep her appointment with you on June 8th. As you know, she has trust issues with physicians. You are one cause of that. She most assuredly had an attitude. She’s has Asperger’s. People with this syndrome have difficulty with social skills. Butterfly has not yet learned to hide her feelings well, or pretend to like someone she doesn’t. Your angry, judgmental behaviour did nothing to change her mind about you. Moreover, telling someone with OCD that they don’t need to wash their hands so often does not magically make the OCD go away, as you seemed to expect. OCD stands for Obsessive/Compulsive Disorder. This means that even though someone knows on a practical level that they don’t need to do something, they nevertheless feel compelled to do it. Wouldn't it be magical if just telling a patient they don’t need to made it go away? But it doesn’t work that way. You apparently aren't really familiar with these disorders, which you referred to at one point as “diseases.” I’m not sure how this is supposed to help patients who have to live with them 24/7.

You asked why Butterfly distrusts doctors and I told you quite honestly that it started when you poked her belly when she was little, without first telling her what you were going to do. It’s not complex ~ you frightened her. It took a long time and a lot of reassurances from me to calm her fear of you. Hearing this clearly hurt your feelings, though it wasn’t intended to. It’s just what happened, and you asked. I’m certain a more reasonable and secure person could have handled that without the emotional backlash. Your apparent need to “get even” with anyone who even unwittingly wounds your remarkably fragile ego is disturbing ~ especially in a grown man, much less a family doctor. Your bullying of my daughter, and your verbal assault on me were not only unwarranted, but very unprofessional as well. There is simply no excuse for such reprehensible treatment of any patient.

Your angry and condescending assessments of who we are have nothing to do with reality. Yelling absurd statements and accusations at a teenager with autism and anxiety issues is not acceptable. No, Butterfly should not have used the F word, but it isn’t as if she was swearing at you. She was merely telling you that you didn’t know what {WTF} you were talking about, and she was absolutely right. To answer the question you screamed at me twice in your office, yes, I am tolerant of her slips of the lip. She’s a teenager. It happens, usually in very stressful situations, which in this instance was of your making. I expect maturity will help her control this. I have since reminded her that she must watch her language in such circumstances, but I understand that she was very upset and felt very threatened by your verbal attack on her. It is your behaviour that I will not tolerate. (Calling Butterfly a “guttersnipe” was a little over the top. I mean, name-calling? Really?)

You are a medical doctor and we have seen you over the years in that capacity only. Your opinions about my choices as a parent were and are not welcome. Your values and hangups are not mine, nor do you have any right to suggest that we must live in accordance with your beliefs and values. Your nagging at regular intervals about my choice of names for my daughter was inappropriate. Parents are not required to consult their physician before naming their children. And your statement that all autistic children should be treated the same ~ to be drugged and put into public school ~ isn’t even realistic. One thing I have learned from the autism community is that no two children are exactly alike and each child must be assessed individually. That you evidently haven’t learned this does not surprise me.

You told me just before we left that you should have called in the CAS when Butterfly was five because of my decision to homeschool her to “nip it in the bud.” Really? Do these intimidation tactics work on your other patients? Is this how you earn respect? As I tried to explain to you (although there is no reasoning with someone raving and spewing vitriol), parents are going to turn for counseling to those who are qualified, informed, current, and respectful of parental rights. For us, this was *Canuck Family Services, where we attended counseling, learned more about behaviour modification techniques and had Butterfly tested, and where our homeschool plan was deemed a good fit for her given her learning challenges. They even provided us with some great resources. Your obvious contempt for *Canuck and for our parental choices once again demonstrates your lack of grasp of the challenges associated with raising a child with autism. We did not seek your advice and approval on this matter then, nor do we need it now. In fact, for you to even continue belabouring the issue at this point is just absurd.

I accessed the best advice and provided Butterfly with the best care this community had to offer. Most of it was helpful to us. Only that from your office was wanting. How we made our choices, how we live and what we believe is simply none of your business. What was your business was to attend to our medical needs, and on several occasions you have fallen short, as you did this time. (We attended that appointment to get results of her brain scan, which you failed to provide, despite my asking repeatedly.)

When I went to you a couple of years before I had Butterfly and told you something was wrong with my pregnancy, you sent me away with condescending words. I wound up in hospital shortly after with a miscarriage. When I went to you with acute stress during a very trying time in my life, you didn’t even take my blood pressure. You offered me Ritalin. (Ritalin, by the way, is an amphetamine ~ a stimulant. You know, like caffeine? Something else you apparently don’t grasp. You seem to think that Butterfly needs Ritalin, but not a stimulant. ??) You routinely belittle your patients, laughing at them when they don’t know what’s wrong with them. Why do you think they go to a doctor? Apparently all you care is that you go home at the end of the day feeling superior to others. Butterfly left your office on June 8th sobbing. I guess making your young patients cry makes you feel like a big man. Since there is a doctor shortage in this community, we have tried to make the best of what we had, but enough is enough.

No patient should ever have to put up with the verbal abuse you heaped on my daughter and me on June 8th. By copy of this letter, I’m requesting that the College of Physicians and Surgeons investigate your conduct. Someone with your undisciplined temperament and anger control issues, and who routinely puts his own petty emotional needs ahead of his patients’ health care, should simply not be practising family medicine.

Sincerely,

***

*The name is disguised.

Since there is a postal strike right now, a copy of the this was forwarded to the College of Physicians and Surgeons by email.

Tuesday, May 31, 2011

A New Adventure Begins

I've been sort of working on Butterfly for awhile to cut back on her consumption of gluten. I've read over and over again about how it can have such a bad impact on those with autism. We had already gone through the Leaky Gut Syndrome thing. (See Leaky What? http://raisingbutterfly.blogspot.com/2010/07/leaky-what.html and The Wiener Incident http://raisingbutterfly.blogspot.com/2010/10/wiener-incident.html) And we know for sure that dietary issues for Butterfly are very real and make a huge difference in her ability to cope with her world and in her immune system responses.

Not long ago Butterfly and I made a shopping trip to the city. She wanted to go to this huge bookstore in particular to get something for me ~ The Gluten-Free, Vegan cookbook by Susan O'Brien. (Yes, I am, due to both colitis and celiac disease.) While there, I was browsing in the cookbook section and came up with, The Autism Cookbook, by Susan K. Delaine. We've been looking at them and talking about the recipes we'd like to try. This led to a decision by Butterfly to try to be gluten-free.

Yes!! I am eager to help her do this and not only try out some of these great recipes, but work out how to adjust some of her fave foods now to g-free meals. So we embark on new adventure to see if eating gluten-free will help Butterfly master some of her OCDs and other remaining problems. It isn't easy for a teen to give up burgers, onion rings and other foods that her friends will be eating. I'm very pleased that she's willing to give it a try.

Wish us luck!

Friday, April 15, 2011

Just What IS the World Coming To?


My heart chills at the very thought of a mother being stormed by armed cops because of a medical choice she made for her 13 year-old daughter. http://www.naturalnews.com/032089_antipsychotic_drugs_health_freedom.html


Are we kidding here? It’s against the law now in the U.S. for a mom to make a medical decision on behalf of her child? The child in question was prescribed Risperdal. Yes, the possible side effects of this psychoactive drug are many and varied. Butterfly also tried it briefly, but it was not a good fit for her either. She was about the same age as the girl in the above story, who has been carried off to a psychiatric facility by the authorities, apparently to have this drug forced on her regardless of side effects and regardless of the mother’s instincts, observations, and decisions in the matter. Really? I mean, REALLY?? Now, I’m sure the mom could have handled the matter better. But I’m also certain that the actions of the cops and especially the S.W.A.T. team were not justifiable. Mom isn’t becoming a shooter if: 1) she doesn’t live in a gun-happy nation; 2) her door isn’t being knocked down and her home invaded by armed men. (I would have fought back too, only the police here would have been pelted with coffee mugs or something. And I would have been tasered, very probably repeatedly, very possibly to death.)

I’m so glad I got to raise Butterfly when I did. I felt a little bit put out at the time, because I faced so much of what we went through without a lot of help. But the Allergist who told me to trust my own instincts was a huge help, with both his advice and the list of reading material he gave me. That was back in the day of little awareness. Now that we’re supposedly all more aware, we’ve entered an age of authority abuse. Great.

I refused medication for Butterfly. I was still figuring out the food connection. I was keeping menus and lists of reactions to certain foods. Medication would have interfered. It turned out in the course of making dietary adjustments, that she is intolerant of propylene glycol, an ingredient not only found in many foods, such as colouring and flavouring, but in many medications as well, including most renditions of Ritalin. I didn’t know this at the time. Nevertheless, the side effects associated with Ritalin gave me pause. Since I wasn’t putting her in school, and I was monitoring what she ingested, I decided she was best off, for the time-being, drug-free. I’m so glad now that I did, because only this is what clued me into the fact that most of the side effects of Ritalin are directly attributable to the glycol. She would have had a terrible time with it. Just as she did when we eventually gave the Risperdal a try. She also tried a version of Ritalin without the glycol in it at one point. It actually didn’t help that much and it was difficult to get from our local drug store, even though the doctor prescribed it. If they told me once that it’s a controlled substance, they told me 18 times. It just wasn’t worth the hassle.

The whole story of “medical police state” seems a little far-fetched, and yet, it happened. And this is just one we heard about. How often have the agencies founded to protect children abused their authority in this way ~ grabbing a no doubt very frightened child away from her mother because they didn’t like the decision the parent made? The child will be forever scarred by this, not to mention the mom, who was just trying to defend her child.

My American friends should not get me wrong... after what happened here at the G20, I’m not judging on basis of nationality. Our societies are very, very sick with all this abused authority.

Shameful. Shame on the Canadian Police Services at the G20. Shame on Detroit’s CPS for overstepping the bounds of their mandate. Shame on the Detroit police for stepping in without warrant or court order. Shame on the S.W.A.T. team that actually stormed this woman’s home. The whole situation could have been handled MUCH, MUCH better than it was. Just shameful.

Yesterday Butterfly refused her pill. We’d tried her on a new medicine that was supposed to help her with her OCDs. It’s called Zoloft. Zoloft is supposed to release serotonin into her brain, where more is apparently needed. But all these drugs come with side effects, and Butterfly seems particularly prone to them. She developed verbal and physical tics that she never had before. Even the doctor agreed that weaning her off the drug was the thing to do. So now we’re searching for something more suitable to help her overcome those OCDs. No Children’s Aid, no cops, no S.W.A.T. team banging on our door.

Still, I breathe a sigh of relief because Butterfly is 18. What if she was still a minor? Would the authorities take her away from me by force? Would they jail me for my parental decision to not use a prescribed drug? Would they put her into a psychiatric facility and force drugs into her that would harm her? Geeez... I now have no reason to believe they wouldn’t.

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?

Oy.

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.

Awareness?

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.

Awareness?

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.
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.