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.