Do you ever experience that feeling post-blog-posting that you didn't quite get out what you had intended to?
I'm experiencing that. ;) It isn't that the comments were not beautiful and thoughtful and glorious, because they were. I just came away from it thinking, perhaps I didn't completely get across what I was thinking. So, instead of deleting and re-writing, I'm just clarifying a bit.
We've been on this path long enough to know that whatever little labels are acquired along the way don't change anything. The labels are just adjectives that describe things we've noticed all along and that help other people understand her situation. They are quite handy and there are millions of times I wished we had a few more so I didn't have to go on and on and on about things until I'm blue in the face. If she were to be diagnosed with this hyperlexia, (which is a HUGE if, although the symptom list is like reading an exact description of her language skills) it would be an excellent tool. It would give the teachers and therapists and doctors working with her a bit more insight without me having to spend 30 minutes trying to describe her language quirks or have them looking at me like I'm crazy when I mention she is reading. In fact, when I came across the information I thought my heart would pop right out of my chest, it was beating so rapidly. When you are so in the dark, like we are with KayTar, any little ray of light it feels like electricity flowing through your body. Knowledge is power and this would just be additional knowledge. But regardless of the information, she will always be who she is...the information is just a tool to facilitate our understanding who she is and how she experiences the world.
The sadness comes in, and it is a rather small sadness at that, when we began to realize that the single, solitary area that we thought to be untouched by all of this hoopla might not actually be untouched by it. In fact, it might be caused by it. It was a touch of sadness that the one area of freedom from it that she had, might not actually be free. To be honest, she is improving so much in so many areas we have been harboring the hope that one day she might grow out of all of this. And I think that Josh and I both kind of took the reading as a sign that maybe underneath the layers of challenges, there she was, a typical child almost ready to emerge...not only typical, but a wee bit brilliant. But now, you see, instead of the brilliance being an exception to the challenges, it is possibly the result of one. Still brilliant, do doubt about that. The way we thought about it just had to shift the tiniest bit. Regardless, there is no doubt she will always be our unique, wonderful little KayTar in all her brilliant quirky goodness no matter how many new adjectives we pick up along the way. The sadness is not really sadness at all, it is just a shift in perception and the realization that her differences really do permeate all of who she is...and that is okay, because it all works together to make her this little child we love so dearly. Today at lunch, I was telling Julie that the more time that passes, the more I doubt that we will ever get that one nicely wrapped diagnosis. I think it is more likely that things will be parceled out, one at a time, to varying explanations. Perhaps her brain had to reroute itself due to the lesions and the fallout is slightly altered processing, resulting in sensory processing disorder, a language disorder, neurological episodes, and so forth and so on. Maybe there is not one big answer out there for us. But as long as we can continue to gain understanding of how she experiences the world and can meet her needs, maybe we don't need anything more than that.
And DUDE. Did you read about hyperlexia? Did you read this post? It is the SAME. It blows my mind. I've never read anything that so accurately describes how she acquires and uses language. It was like they wrote it based solely on her. Really, really weird. I read about it in several different places and it is just sounds so much like her. It does seem to be tied to ASD in lots of areas, but sometimes is considered to be separate. While we've always felt KayTar exhibits some ASD qualities, especially in regards to language, she doesn't fit the ASD picture because of how very social and interactive she is, among various other things. I'll be intrigued to hear what our pediatrician says about it all. Once we restart therapies, I'll discuss it with her speech therapist as well. We will see if anything comes of it.
For us, this will never be less awesome. One day it might just become HYPERawesome. ;)
PS: Joy (my anonymous friend) thanks a ton, I really mean that. That was the first time I've ever heard of it and the information has been really quite illuminating. I am VERY glad you left the comment. Like I said, my previous post just didn't quite say what I meant for it to say. I hope this one cleared it up just a bit.
honey, you described that so eloquently, that tiny shift in perception that still weighs a lot while not changing anything.
kyla full of grace.
I had to Google "Elucidation," like the nerd that I am, because I wasn't entirely clear on its definition. And now that I am, I know that it is the perfect title for this post.
Perfectly lucid and clear.
Kyla this is such a lovely description of a process that is so conflicting.
It was amazing to me to read the hyperlexia description and I only know about Kaytar from what you have written here, I can only imagine how you felt. It is clearly something that sheds a lot of light.
you know that i understand entirely don't you? it has been like this for us... a slow process of trying to fit the jigsaw together... inching closer to a diagnosis so that W will get the support she needs... of course a label won't change who she is, but it definitely helps when dealing with schools/teachers/the big wide world...
That makes perfect sense to me. I can almost feel how badly you want just one facet of her being to be untouched by this whatever-it-is. I hope you have some answers soon.
listen to her read.
Lesions or no lesions, Kyla, I can see where she gets her brilliance from.
Every time I read your blog, I learn something new. You are wise beyond your age. And my age.
Hugs to you!
You are a wonderful, wonderful writer, Kyla. (and yes, I know that feeling...)
Kyla--ditto what Family Adventure said--you write so well and are so wise. Thanks for sharing your journey.
And yes, I totally get what you're saying. One time I fought for a good 15 minutes to get shoes on Simon's little feet (due to low tone) and I thought even this? Even something as simple as putting on shoes? What else? Can we just have something?
You describe this all so well. Sometimes it is just so hard to separate the child from the label.
We are constantly amazed by our son, who has Asperger's, and his ability to remember just the smallest of details, his uncanny ability to understand, almost innately, science and how things function; his ability to obsess over things until he knows them inside and out. This is a part of who he is and it may or may not also be a result of his ASD. But it is STILL amazing, regardless, these gifts and KayTar's gifts are amazing too, no matter what "causes" them, or what bigger picture they are a part of.
I just read these 3 posts in a row and am fascinated. Did you ever see B&P's post last December titled "Isn't it ironic"? In it she talks about the irony faced by parents of autistic children who point to all their child's exceptional behaviours as proof against the condition when in fact they are manifestations of it. I think this is what you are getting at here as well.
And you're right: it's not that you need the labels for what she is undergoing, it's just that you need the labels to interact with others.
Kyla: you are a super genius. Kaytar comes by it honestly.
well Hello, Kyla. I feel like I see your feet all over the web, and feel almost as if I know you and your kids already, from what I pick up on other blogs, etc. And now you have stopped by mine (thanks!) And here I am at yours.
You really are undergoing quite a journey, and from what I can tell are a person of amazing strength and good attitude.
it's a pleasure to "meet" you.
(Off topic, just wanted to tell you Happy Thanksgiving!)
Your perception and ability to communicate are exceptional. I've only been reading your blog for a few weeks (or is it months now?) but you amaze me with your ability to process new information and make a paradigm shift. You rock!!
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