Some days it seems like just yesterday that my husband and I were beginning to notice some things in our then six-year-old daughter that seemed to stretch beyond the realm of what we knew about her sensory challenges. I couldn't quite put my finger on it, but a word kept coming to my mind, almost in a whisper voice, and it said "Asperger's". "Asperger's?? What's THAT?", I asked myself. The name wasn't completely foreign to me, I had heard about it on an on-line parent support group that we had belonged to since our son was born with Down syndrome, but still, I had no definitive answer for what this "Asperger's" could possibly be in my reality. So we did some reading, which led to more in-depth research, taking us on many rabbit trails throughout the cyber world, from cursory summations on pedestrian web-based encyclopedias to more scholarly journals. Soon we were ruling out everything BUT this Asperger's Syndrome, whatever that was.
The next step, in my mind was to take my findings to our pediatrician, where he would........what, coronate my daughter with an Asperger's crown? I have no idea what I was expecting but the meeting was fairly benign and anti climactic and left us with neither a crown nor any glory. He agreed that my daughter probably did fit all the criteria, but since she was already getting occupational therapy at a local pediatric outpatient clinic, he offered no other suggestions or strategies for how to best live with our new found discovery. At this point we had already begun homeschooling, a decision with which he wholeheartedly agreed, so he didn't need to offer any ideas on how "to deal with school district" since we were mercifully beyond its grasp of influence and opinion.
So on one hand, I felt completely validated as Mom and God's Personal Research Assistant that I had followed the correct crumbs down the correct trail and ended up at the right little cottage in the woods. On the other hand, both my husband and I would often look at each other and say, "So what, she's got this "Asperger's syndrome (named for Austrian researcher Hans Asperger who first noticed a segment of the general population who shared a variety of characteristics and "quirks", including social, emotional, physical and cognitive, but who were not socially/emotionally impaired enough at that time to be labeled autistic), but what does that MEAN for us??"
A name is just a name, and yet we felt like that name was already sapping the power and significance away from the uniquely talented and abundantly creative person that our young daughter was already showing herself to be. So, in an effort to bring the power back to our little family unit, we began calling this Asperger's-Syndrome-Thing "Cherry Blossom Syndrome". Don't ask me why. Maybe it's because we were living up in the Northwest at the time and I grew up with cherry blossoms in the Spring. I honestly don't know, but it seemed to serve as a reminder that there's NO power in the name itself. It's just a name. Labeling it Asperger's might help us garner supports and services for her in the future should we ever need them, but we weren't going to let that name dictate the flow of our family.
As social media has exploded in the past five years, I find myself in more and more conversations with parents, who like we were, are at a loss to know what to do with their child as they see more and more unusual characteristics emerging, especially when those characteristics can be so disruptive and upsetting to their daily family life. While I think I might be able to spot another Aspie from a mile away, it really is just a word and in and of itself labeling your child an Aspie (a completely acceptable and non-insulting moniker in the autism world) doesn't change that parent's reality at all. On the other hand, going through the process of an "official" diagnosis can be VERY validating and VERY reassuring that what your child is experiencing internally has absolutely NOTHING to do with your behavior, past or present and that you have not CAUSED anything to happen or not happen neurologically. In autism and Asperger's there are some key developmental milestones that are missed and we have absolutely NO CONTROL over that (and yes, parents, in particular mothers, are STILL accused of being "refrigerator moms" by their family docs). So to me, getting this label is kind of a two-edged sword; it can be really, really helpful to have a name to put on this group of characteristics that you can plainly see and that you deeply experience (sometimes at deafening decibels) everyday, but on the other hand, having the name doesn't help you deal with the meltdowns that come out of nowhere, the oppositional defiance, the argumentative nature, the hyper-sensitivity to what seems to you like completely random things, and the ability to have hyper-focus and perseverance while building a Millennium Falcon for twelve hours straight and yet be too exhausted to brush his teeth.
At the end of the day it is what it is, and on most days it's just the Cherry Blossom Syndrome. Some days a I curse the cherry blossoms, mainly because I feel wholly inadequate and completely overwhelmed being in charge of their care. Other days I'm so grateful we have Cherry Blossoms because I know it's the people with special brains like these that are making our world a much better place. I know it's my daughter who, created the way she was created, is making MY world a better place. I try to encourage myself and other parents to NOT think of their child as having a particular syndrome, but instead try to help their child use their unique giftedness to make their worlds better. Are there challenges with this....this thing we call Asperger's? You bet. Your child OFTEN feels completely out of control in their own bodies. They are scared out of out of their minds and act accordingly. I think the more we study the cherry blossoms the more we see their beauty, but first we have to know how to care for and grow these precious flowers. As gardeners we have to learn about the common pestilence that harms the precious buds, we have to find the right soil; the right combination of acid to alkalinity, and the right amount of moisture at just the right times during the growing season. And maybe that's where the labels CAN serve us, so we know who to connect with at the garden center.
No comments:
Post a Comment