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.