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.

Friday, January 28, 2011

There's Progress, and then....

Moments of notable progress are difficult to achieve sometimes, and all the more celebrated because they are so hard won.

I am told by our doctor that OCDs are to be expected with Aspergers. He prescribed meds intended to control them, but they turned Butterfly into something of a zombie. Turns out that particular medicine also contained a sedative, which she simply didn’t need. Yes, she is hyperactive and yes, she has trouble sleeping, but whatever was in this drug had her sleeping 14 hours a day. This wouldn’t do. We don’t want drugs that just knock her out or change who she is. I don’t just love Butterfly, I like her. She’s a bright, funny, creative person and her restlessness is part of her charm. She needs help controlling her OCDs, which, I’m told, is a neurological problem involving serotonin. Drugs that help her specifically with this would be helpful; drugs that alter who she is, not so much.

We made a further adjustment in diet, as mentioned in the previous post. She had been using goat milk products because they didn’t bother her like bovine dairy foods did. Nevertheless, turns out, even though the symptoms differ, goat milk is a no-no too. She probably shouldn’t be having sugar either, but that’s a tough one at this point. I mean, I had her off sugar for eight years or so when she was little, but there were alternatives she could have, such as honey, maple syrup, etc. When she became allergic to maple and intolerant of honey that really only left artificial sweeteners, which we tried for awhile. Turns out they aren’t exactly healthy either. Yes, we know about stevia and tried it once. The stuff that was available then didn’t work so well. I hear it’s more refined now, and we may try it again. She probably shouldn’t be having gluten either... another tough one for a burger lovin’ teen. For right now, she’s trying to find treats that are sweetened naturally with fruit juices. Gluten is another story. And so we struggle on, as we must, because there just aren’t any easy answers or quick fixes and experimentation takes time.

Experimentation.... this brings me to a few more words on vaccinations and studies, aside from my page on this blog entitled, Autism and Vaccines. It would be helpful to people struggling to find answers if more people were working together with a fundamental understanding that not every story has to have the same beginning and end, though there are common elements. I have to say that I’m far more disappointed in the celebratory mood of some people at perceived failure, than I am in the results of any one study. This would hardly be the first time a study has been discredited and a doctor’s career ended by the threatening tactics of big money interests. I’m not saying I know this is what happened here; I’m just saying I’m not judging. I’m waiting. I don't think it's helpful if everyone is looking for a smoking gun while standing in a minefield. So I don’t understand why some people are so eager to dismiss the entire vaccine theory out of hand, based on the failure of this study. That makes no sense... warped logic, at best. I mean, if the science of the study was bad, then the study itself is null and void, as in, it proves exactly nothing. Nada. Waste of time. Temporarily dashed hopes for parents who observed the role of vaccines in their child’s development and want answers.

What saddens me is the apparent need of some people to rub noses in the bad news. I guess I’m old. I was taught that to do such a thing is nasty, to say the least. Perhaps I’m missing something... do these people have some sort of stake in this? I mean, I get it: their child was born with autism. All possible causes need to be more thoroughly researched. But am I supposed to rewrite my own personal history to suit the needs of those people? Because I’m not willing to do that. I can only tell my story the way it happened. Moreover, there are other parents who experienced something similar to what I did, with a plethora of anecdotal evidence that’s impressive to anyone who cares at all about truth. They aren’t about to rewrite their histories either. The issue of the role of vaccines in autism is not by any stretch of the imagination, finished. And yet, many people seem to think it ought to be.

Butterfly’s experience with vaccines when she was about 8 confirms for me that they are, for her, toxic. She stepped on a nail. Who wants to mess with tetanus? I took her to her doctor for a tetanus shot, but he gave her tetanus and polio combined. I don’t know how significant that is; I do know she was sick as sick could be for almost two weeks. She was old enough at the time to remember it vividly. Technically she is due for another tetanus shot, but won’t be getting one, any more than she will a flu shot. “Less sickness if I just get the flu, Mom,” she says. Thing is, we have no way of knowing if these vaccines even do a thing for her when they make her so very ill. More harm than good simply means no vaccines for Butterfly. Am I celebrating this? Are you kidding? It worries me. I mean, what if she wants to travel? What if she wants to go to some country known for some deadly illness? What if she steps on another nail? There is nothing simple about this problem. In fact, it’s frightening. So to those who think a toxic reaction to vaccines is a joke, laugh your asses off I guess. But I will continue to tell OUR story honestly. And I will continue to question what is in our vaccines. I will also continue to hope for answers.

In truth, I hope everyone is finding their own way along their own unique path on this journey we call life. My own priority is simple: my daughter. I am happy to share when we have either success or failure of something we’ve tried because maybe it will help someone else. Whether it does or it doesn’t, you can be assured that I won’t be rubbing your noses in any bad news that comes your way, because that just isn’t my style. Yeah, I guess I’m old or something.

Tuesday, January 4, 2011

She's a Writer!

A little recap: Butterfly’s DX included two learning difficulties (as I prefer to call them, as opposed to “disabilities.”). One is dysgraphia. Now, one might assume that the abilities to read and to write come from the same part of the brain. They do not. Butterfly did have to spend extra time learning vowels during the course of her homeschooling ~ time the school system would not have given her. But at home, we spent five weeks on vowel games and rhyming word games that helped her put vowels in their place. Suddenly it clicked and there was no slowing her down. She was reading road and store signs out loud from the back seat of the car when we went out, not just content with the story books I had for her at home.

One day when she was about 8, Hubby brought home the second installment of the Harry Potter series that he’d come across used. Bud and I read it together and we were hooked. After that, we got the first book, then kept up with the series as each book came out. She must have read each one, including those great, thick installments, at least 4 times each. When it was time for something fresh, I started her on The Chronicles of Narnia, The Guardians of Ga’Hoole, the Little House series, Spiderwick Chronicles, the Pendragon series, and she discovered Nancy Drew, The Hardy Boys, and so much more on her own. From Science magazines such as YES Mag, National Geographic, and all those books, Butterfly was very well read, and becoming very well educated.

Alas, she could not write. As mentioned in a previous blog post, not only did she have difficulty with the physical act of writing letters on paper, but also with organizing her great ideas enough to harness them in ink. I tried very hard to give her writing assignments involving subjects that interested her. Still, once she got to the stage of being given the work to do (as opposed to me standing over her as she did it), she handed in not one writing assignment. I simply had to accept that Butterfly could not write. Yes, I admit it, I gave up. It was the right strategy when it came to cursive writing; I couldn’t see much future for nagging her for writing either.

But slowly developing in Butterfly was a consuming interest in music. As she broadened her scope of musical genres and started to examine the different elements of music, she became increasingly articulate about the meanings of lyrics, the overall social message of songs, the lifestyle choices of bands, and more. She even changed her goals with a view to making music production part of her future. I suggested she start a music blog. In fact, I figured the writing part would be too challenging for her, so I suggested we start one together. For months, nothing happened. She was having more issues with diet and reactions. When we changed her diet again, she suddenly decided to start that music blog, on her own. And you know what? She’s a writer! Knowledgeable and impassioned by her musical topic, she churned out those words on her own. The only help she needed was with the theres. You know, there, they’re and their. She doesn’t even need help with those anymore. She even has her punctuation down pat... mostly. Moreover, she is planning another blog. Hope springs eternal that she will fully enjoy the catharsis of the written word, which not only expresses one’s angst in an acceptable manner, but is so satisfying as well.

There are still problems we’re working on. Everything is not all hunky-dory. But I am very proud of her music blog. After all those years of “F” in writing assignments, I am just plain pickled tink!

Butterfly’s music blog, Musical Notes: http://musicalnotesblog.blogspot.com/
(Warning: there is expressive language in some of the song lyrics posted.)