Posts tagged ‘behavior’
It’s about that time of year. I’ve been listening to Christmas carols for a couple of weeks now, which is far better than my usual late September starting date (with apologies to my college roommate, who teases me about it to this day), and C’s Christmas list is long and wide and full of things there’s no chance anyone will get him.
C has been asking for a couple of months now if he should check his name on santaclaus.net to see how good he’s been. But he hasn’t done it, and last night I found out why. While he soaked in the tub, we talked about our plans for the holidays. “I’ll bet Santa won’t bring me much this year because of my behavior,” he said, his head hung dejectedly.
My heart broke more than a little bit in that moment. I couldn’t lie and tell him his behavior has been fine. It’s been a challenging year for sure: C’s behavior has rocked our family to its core, and I’ve read more books on defiant children than any parent should even know exists. I’ve collapsed on the floor in sobs too many times to count. And Husband and I have locked ourselves in our bedroom far too frequently in order to escape the wrath of C. Still, there’s nothing more heart wrenching than a child whose self-defeat is written all over his face, and all I could do was give him a big kiss on the forehead and tell him that Santa knows he’s been trying his best.
Once again I was thrown into both the joys and sorrows of parenting this particular child. In the same moment, I was both impressed C recognizes his own challenges and sad that he feels his challenges are having such a profound effect on his life. It’s times like these when I remember that C carries the weight of the world on his shoulders, and there’s little I can do to help him shoulder the load.
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.
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.
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.
C is a pretty happy kid, or, as we like to say, he’s a pretty happy kid – except when he’s not. He can whine with the best of them, and despite our consistency in not changing an answer once we give it, he still feels the need to push the issue at least a dozen times before completely losing it when the answer remains no. Sometimes I fantasize about sending him off to live with the Duggar house (if you don’t know who they are more power to you) for a week or two for behavior boot camp, but then I remind myself that autism lives at our house. There’s a reason for troubling behavior when it happens. I may not always know what triggers it, but there is most definitely a significant trigger and it’s not just about bad behavior.
This night, C rose to new heights of unhappiness, and it pains me to say that for the first time ever, I was actually afraid of my child. Scared that he would hurt me, I was left fretting about what his teenage years might bring if this is what we’re getting at 8. The multiple tantrums that started shortly after I picked C up from school seemed to only escalate in their severity and, frankly, violence.
If you really knew C, you would be stunned. Aside from the fact that he’s a mere 46 pounds and I am, well, not 46 pounds, it’s uncharacteristic for him to go to this extreme. Fortunately it’s rare and unusual, and probably takes him by surprise as much as it does us. C’s teachers would not believe it was possible that a child who behaves beautifully at school could be such a Jekyll and Hyde at home on occasion. So much so this evening that even Husband, who always thinks we are great parents, said he felt like crying. I know it’s bad when it gets to that point. Actually, it’s never made it to that point before tonight.
We have a plan, though. As C and I snuggled in his bed before lights out, I suggested some things he could do when he gets angry that won’t hurt himself or anyone else. He didn’t want to hit his pillow because he didn’t want to hurt its feelings (and have the now anthropomorphized pillow give him bad dreams). Instead, we decided, when he feels as though he’s about to lose control, he will go into his room and jump on the bed. That’s the plan for the moment, and I think C felt empowered to have a solution that he liked. And hopefully, it will diffuse the situation enough to keep C, and everyone around him, safe.
I’m pretty sure all the things I swore as a child that I would never say to my own children have come out of my mouth in the last four hours. From, “Because I said so,” to “Mommy and Daddy make the rules, not you,” I have broken all those childhood promises to myself in a very short amount of time. Geologically speaking, anyway, because the last four hours felt like an eon or twelve.
Yet like all good dysfunctions, I’m pretty sure I can blame this one on my mother. The price we pay, and it is the absolutely only price we pay, for having C spend a night at Ga and Pa’s house, is a complete hellion when we get home – to the point where Husband laughingly asked me to call Ga this evening and ask why she took all of C’s good behavior.
It never fails; we pick up C from “Grandma camp,” as we call it, and get the report that it was all sweetness and light. After all, it always is when C is with someone other than us, which leaves us no conclusion to which we can arrive except that we are exceptionally bad parents. Well, that’s the conclusion at which I arrive; Husband is far smarter than I. He knows, and fully believes, that a) C saves his worst behavior for the ones he loves the most; or b) that C works really hard to hold it together at school, for example, and then has to unload when he comes home, or c) C dumps on us because he subconsciously he knows he can and that we will still love him after it’s over.
It’s not as if he gets away with anything at Ga and Pa’s house – far from it. The kicker is that he doesn’t really even try to get away with anything at their house. Or school, for that matter. The Dr. Phil in me says that we are doing something wrong at home that sends C the message that it is okay to test each and every boundary as many times as possible in a single hour. But I think I’ll go with Husband on this one and choose option ”a.”
You probably don’t remember me, but I remember you. You see, I used to be just like you, although I never would’ve been as vocal about it. I was one of those people in the grocery store who couldn’t stand the sound of a screaming child. I still can’t stand it, but not for the same reasons: now I wonder if the child is overly sensitive to sound and light, or if they have been stretched past their point of self-control. I don’t always assume kids are “typical” anymore because sometimes it’s so hard to tell. How I wish you knew this fact.
You see, this wasn’t our first visit to the train park. My son loves that place more than just about anywhere else on earth, and we’ve worked very hard to make visiting there pleasant for all of us. We’ve been going for years, but going with a friend is something he’s never experienced. I took him and his one friend, the first real friend he’s ever had, there after school. I’m not sure I’ve ever seen him as excited as he was that day, hands flapping as I picked them up, jumping up and down as we waited in line for the train.
Perhaps it was my mistake, but after years of his begging, I finally agreed to let him ride in the enclosed kids’ caboose in the back. I’ve never let him go on the caboose because I wasn’t sure how he’d handle it. What if it terrified him? There’s nothing that can be done until the train ride is over, and I can’t be in there with him to help him. But this time, with his special friend, I thought perhaps it was time.
Sure enough, he screamed the entire time – but happily. Stopping only to breathe, he continued his high-pitched, excited screaming for pretty much the whole ride around the park. In the car in front of the caboose, just far enough away that he couldn’t hear me, I didn’t know whether to laugh or cry. He was clearly so thrilled to be in that caboose he couldn’t even contain himself. Yet at the same time, I suspected some of the other kids didn’t like it, despite some of their eager participation in the screaming themselves.
When the train stopped, I waited outside the caboose, speech prepared to remind him that when other people make loud, unexpected noises it scares him, and how he needs to remember there are other people around. Of course he let out one last little screech, which prompted you to scream yourself, so angrily, “Oh, STOP that SCREAMING already!” Everyone standing there snapped their heads up at your tone, except my C, who was oblivious. Fortunately, you weren’t even on the train yourself (your granddaughter being able to go alone), so you didn’t witness the entire trip. Although I’m sure your granddaughter filled you in on the highlights.
I had the chat with my C, after which he was appropriately chagrined. I saw you take your granddaughter over to the carousel, and I thought about approaching you to explain. I wanted so desperately to educate you about what we’ve gone through to get where we are. I wavered, not wanting to seem like a parent who makes excuses for their child, but also not wanting you to get away with feeling so self-righteous about this supposedly horribly behaved child of mine. I was so angry at you and people like you I wanted to strike a figurative blow for all of us parents out there who work so hard to even take our kids anywhere. We try so hard to protect your sensibilities, but frankly, I’m a little fed up at this point with worrying about people like you.
So I find myself thinking it’s a good thing you are blessed with the lovely, quiet, seemingly well-behaved little granddaughter you seem to have, because I suspect if there were any hints of issues, you wouldn’t be able to handle it. It would probably surprise you to know how lucky and blessed I think I am. Wherever you are, oh grandmother, I hope you know how lucky and blessed you are.
I’m often looking for a quick explanation to give to people when they ask what it’s been like raising C. I realize it’s difficult for people to understand what other people’s lives are like, and I want to be able to share in a way that helps people understand both the challenges and the joy.
I think having an autistic child, no matter where on the spectrum they fall, is like multiplying everything by 10. Much of what C does is hyped up in one direction or another. While I have been thankful not to have to attempt to figure out how to teach C to read, I would give just about anything to get him to eat a new food. Learning the states and their capitals? No problem. Blowing his nose? A zillion steps that have taken years to process.
And skipping developmental steps, or going through them at different times than “normal” have also presented interesting challenges and non-challenges as well. While my friends were desperately child-proofing every single thing in their homes to protect their toddlers, C was busy working on sitting up. We never really had to worry about him hitting his head on the coffee table; by the time he decided he was ready to walk, he just stood up and walked. There was no toddler stage in our house.
Not only are tasks often out of whack in terms of the ease or difficulty with which they are learned, but emotions are often very strong as well. While the tantrums and extreme distress are difficult for not only us, but for C as well, it’s tempered by the great and absolute joy he experiences over minute little details in life. New toothbrush? Tantrum. Getting an extra 5 minutes of computer time? Sheer giddiness. Outgrown shirt? Tears. New yellow shirt to round out his “closet rainbow?” Worthy of a press release.
Husband and I often laugh at ourselves in wonderment at the fact that we would probably have no idea what to do with a “typical” child. And honestly, we consider that fact a bit of a badge of honor. Not that we deserve a pat on the back; rather that we are in some kind of cool, secret club. Sure, the dues can be high, but it’s worth every figurative penny.
After a particularly distressing evening with C, one where I am striving to keep my patience and calm (and not particularly succeeding), I always enjoy going into his room for the last look after he falls asleep.
In sleep, he brings me back from frustration to calm. His angelic little face resting on his pillow, blanket and stuffed dog Bill wrapped up in his arms do wonders to make me forget the rest of the evening. No trace of his screaming, defiance and tears are left. I cease to wonder how we’ll get through this latest behavior challenge and gently brush my lips across his cheek. And smile.
We have different days at our house. Today was a Dennis (a.k.a. “The Menace”) day. It’s a day when I count the hours until C’s bedtime hoping we can all survive relatively unscathed. C is wound up, sassy, hyper and completely “wiggy.” My Nana would have said he had the devil in him today. I never know what triggers these days, and fortunately they come fewer and farther between as of late. We have various solutions to Dennis days; at the moment C is in a shower, happily contained, putting sticky letters on the shower walls and hopefully being soothed by the warm water. Nevermind we live in the desert where water is scarce. Some days our environmentalism simply goes down the drain, no pun intended.
There’s also my favorite type of day, the “Calvin” day. An enormous fan of the now defunct comic strip “Calvin and Hobbes,” I have long adored the trademark triangle smile of Calvin that truly does appear in my C. I think Calvin was somewhat reincarnated when I gave birth. On these days, C is mischievous and adorable, doing such things that make me laugh even though I probably shouldn’t.
Last is a Rainman day. Punctuated by questions such as, “Mommy, what is negative 200 minus negative 200?” (Um, I dunno…???), Rainman days are by far the most interesting. I catch surprising glimpses of how his brain works and things he’s learned I had no idea he knew. Lists of planets, great big fancy words such as “cartographer” or “communication,” and other random assortments of facts and figures leave me wondering if he really is a species of sponge.