Archive for March, 2010
Last week, the autism blog world was in an uproar over a post written by a woman who witnessed a child who was clearly autistic, even though the poster didn’t recognize it. There’s been some discussion since about how anyone can diagnose the child based on the writer’s description (and it’s really irrelevant to the discussion), but let’s face it, we can. Most of us (correctly) diagnose kids in the grocery store every day. We can spot those kids a mile away, and even easier, we can spot their caregivers simply by the words they speak. “Yes, granddaughter, you are being very patient waiting in line,” even when it’s obvious the child isn’t being patient in terms of neuro-typical standards. But we know that language; it’s the language of someone who has probably worked harder than anyone to get that child where she is, actually in a library, standing there without screaming, seeing another child doing what she wants to do without having an earth shattering melt-down. Let’s face it, that’s something to be rewarded with praise.
Yet this blogger responded with harsh judgement at how both the child and the grandmother were handling themselves. Couched in humor at a child’s expense, she praised her own behavior in not verbally condemning the pair, all the while congratulating herself for her own restraint. In actuality, that grandmother probably went home and celebrated how well her granddaughter did at the library that day waiting “patiently” in line. We’ve celebrated those things; the first time C left the park without a tantrum, the first time I was actually able to get him into the grocery store (see here), and the first time C made it through a movie. These are big deals for us, and I’ll just bet that somewhere out there a grandmother is still glowing about how well her little one did at the library that day.
I was struck, as I read the post and the comments that followed, by how much that woman sounded like me BC (that is, “Before C”). I was the one in the grocery store wondering why a mother couldn’t control her screaming child. I was that person who, it pains me to admit, would have glared at a child disrupting the sacred quiet of the library. I was the one on the airplane groaning inwardly if I was unlucky enough to sit near a toddler. I would like to think I hid all that from the mothers parenting those children, yet I know how terrible I am at hiding any emotion I have. I’m quite sure I was responsible for my fair share of causing other people pain.
Then, nine years ago, I received my cosmic lesson in the form of C. He changed everything for me. I became the mother who worked so hard with C before ever stepping foot in the library on his “library voice.” It’s hard for other people to understand just how much work it takes to get our children to do what they do. You see, we, and other parents like us, try to anticipate every single possibility that might arise in any given situation. And we train for them. Sometimes, we just miss, and sometimes our kids just aren’t there yet. “Didn’t you talk to him about not sending the bowling ball down someone else’s lane?” Husband innocently asked after hearing my tale of C standing in his own lane and somehow sending the ball right over the middle into the next guy’s lane. Then we laughed at ourselves for ridiculously trying to be two steps ahead of C when we’re really two steps behind.
The irony of my own situation in once being like that blogger is not lost on me. For all our talk about helping our children with autism learn empathy, the fact that I had my own lesson to learn about empathy, and that I had to learn that lesson from my own child…well, I suppose that is my cross to bear. Don’t think for a minute that I don’t know there’s some version of karma operating here. The thing is, I’m so thankful for that karma. I can say with a smile that I am so much better than the person I was ten years ago. I haven’t been given just what I can handle; I’ve been given exactly what I need.
Today, on C’s 9th birthday, long after all the gift wrap was trashed, the cards were strewn around the floor, and the cupcakes were all eaten (by the other kids, that is), I thought about how far we’ve come. How far C has come. From a premature and deathly ill infant so overwhelmed by life itself he couldn’t tolerate the noise of his own toys – to a loud, rambunctious, keeping-up-with-the-best-of-them boy at his own party, C’s journey has been a wild ride.
There were still snapshots of autism at C’s party – had I captured a picture of C bending over to lick the frosting off his cupcake because he didn’t want to touch it and pick it up. Or perhaps it would have been obvious in a picture of C and his best friend taken two seconds after C told his friend not to touch him anymore. Or maybe it would have been clear in a picture of C playing with the girls because the boys had probably gotten just a little bit too loud and rambunctious.
Probably what was most obvious, however, was the picture someone could have taken of me. No longer did I feel as though I needed to be right in the middle of things in order to protect C and protect others from his “enthusiasm.” He was surrounded by his friends, he was safe, and he was having fun. Morever, so was everyone else. In that moment, I realized how much has changed for me. In the midst of all this chaos that has been my life for the last nine years, there was calm. Entire minutes went by where I didn’t even know where C was or what he was doing. And he was fine.
Even better, I was fine.
When I was pregnant, I remember visiting Husband’s family over Christmas, and spending some time wandering through the Mennonite general store near his parents’ rural Tennessee home. I don’t remember who found it, but we eagerly agreed to purchase a book entitled How to Train Up a Child. I read that book, took small pieces of it to heart, but left most of it aside as simply too harsh for my tastes.
Now, nine years later, I’m reading my way through my first Asperger’s book. I know, those of you in the know are wondering why it took me so long. Well, for all these years, I’ve been reading books about autism, because that was, and is, C’s diagnosis. Quite frankly, after a good 25 books on the subject, I quit. I couldn’t take it anymore. And somehow, in the years since I stopped reading, C became more of an “Aspie” than an “Autie,” and I only recently realized I had a whole new set of books to read.
So it’s time for total honesty here. For years, years, I have known in my heart that somehow our parenting, no, actually MY parenting, is responsible for the part of C’s behavior that is the worst. The demanding, entitled, bratty behavior that we see only at home simply must be my fault – even though I’d never admit that in public. I do what all of us do; I agree with those who try to comfort me by saying it’s not my fault while knowing deep down that it is.
Then I found my new love, Tony Attwood (sorry, Husband). I don’t care if he’s a one foot tall troll with hairy warts covering his face – he’s my new man. Within three pages of reading The Complete Guide to Asperger’s Syndrome, I knew somewhere deep in my soul that none of C’s most challenging behaviors are due to any bad parenting on my part. The guilt is gone, and I feel as though I can parent armed with an entire new kind of ammunition: understanding. It doesn’t make any of it easier, but it sure makes me feel better about how I’m doing it. And I’m doing it right. I’m not too firm, not too soft, but just right. I know as I continue to read this book I’ll learn new strategies for helping C navigate his world, and I’ll learn new strategies to help me navigate my own world as C’s parent.
The Complete Guide to Asperger’s Syndrome? $29.95. The weight lifted off my shoulders? Priceless.
The world is now our oyster. Today, with one simple event, I feel as though millions of possibilities have become ours to explore. For the first time in C’s life, he went to and ate at a restaurant – from the menu. First. Time. Ever. It bears repeating.
If you don’t know about C’s eating challenges, see here and here and here. It’s been arguably the most difficult part of his journey with autism, and the one least understood by just about everyone. It’s one of those things that doesn’t compute; how could anyone possibly have to learn how to eat, and how could anyone actually be afraid of food? It’s so far out of most people’s experiences that they can’t even comprehend it.
Our lives literally revolve around C’s eating, or lack thereof. We are always home at mealtime, we stay in condos when we travel so we will have a kitchen, and we never run errands without carrying whatever food and drink he may need. We don’t “go to the game and grab a bite” along the way. It just doesn’t happen. C doesn’t even feel comfortable sitting with us in a restaurant while we eat, so somewhere along the way we stopped taking him, and mostly stopped going ourselves. I remember the last time I really sat in a restaurant with him - he was probably three years old (at least five years ago) and he sat across from me at Chili’s, eating his meal brought from home after a visit to the neurologist.
For C, doing what he did today is the equivalent of bungee jumping for someone with a fear of heights, running a marathon after years of training, or doing the one thing you never thought you could do. And while my head is still spinning from the emotional high, I know that it is not so simple as to be a problem fixed. It may be months before he is ready to make a repeat performance, and not everyone will have salmon with nothing on it, white rice with nothing on it, and mandarin oranges that I could tell were the exact same brand he eats at home. And still, I know that most people won’t realize the magnitude of this event, so I’m not sharing it with the general masses. But that’s okay, it will be our little secret.
Recently, we’ve been battling some serious discussions, arguments, and outright defiance when we ask C to do something, or even when we tell C something. “The sky is green,” C will say in response to my statement that it is blue. The constant debate over seemingly everything has taken a toll on my already fragile state of being lately, and I often find myself waking in the middle of the night with a small idea to help facilitate some peace and calm at our house.
I spent much of today working on a modified PECS board with all of the things C needs to do on it in the hopes it will make getting ready for school in the morning a simple - ”Have you done everything on your board?” – instead of 15 reminders to put on his shoes (“But I don’t want to wear shoes, I’m not going to wear shoes!!!!”), 47 requests to pack up his backpack, and at least 10 attempts to make sure he is actually wearing pants before we leave for school.
For those of you out there in la-la land itching to leave me a comment with the old “ask it once” adage, I’d like to invite you over to our house. Come on over, and ask C (once) to put his blanket away. Sit there while he remembers and starts to get it, but on his way he notices his remote control car, which he plays with for a few moments before he gets his shoes on and goes outside to play with the car. Then we’ll leave for school and the rest of his life. Trust me, you’ll grow old waiting for that long forgotten request to be both remembered and completed.
Yet even despite this grand new chart that is beautifully hung in the kitchen - along with the new “behavior bowl,” (replacing 1-2-3 Magic, which just doesn’t work very well at our house) in which C will put red and green beads for bad and good behavior with a reward for more greens than reds at the end of the week - the best ideas are sometimes the simplest ones. Instead of the argue/debate/discuss response I usually get when asking him to do the smallest of tasks this evening, he actually said, “Okay, Mom” when I asked him to put something away. So stunned was I at the almost complete lack of WORDS that I instantly knew we had another trick to try. “Those were the most beautiful two words I’ve heard all day, C. Thank you.” He was happy when I exclaimed how nice it was to hear and how I’d love it if he said those two words more often. In the 1/2 hour following, I think he’s managed to squeeze it in at least a 14,000 more times.
Sure, C’s going overboard in his usual fashion, and will until it levels out. One end of the spectrum to the other, so to speak. And it probably won’t work long-term. But I’m hoping, hoping he will say it enough that it becomes habit. Perhaps soon I’ll ask him to fix the economy and make me dinner.