Archive for January, 2010
Once during our particularly ugly battle with the shall-remain-nameless-Montessori-school-from-you-know-where, we hired an outside consultant who evaluated kids with autism. She went into the classroom to observe, spent a lot of time with C at home, and participated in his IEP process. She was one of the most amazing people that ever worked with C, and many of the things she wrote about in her report have stuck with me all these years later.
At the time, we were dealing with some pretty defiant behavior that made us want to pull out our hair. If C didn’t want to do it, he just didn’t. We had to motivate him to do just about everything that wasn’t on his “I want to do” list, and it was frustrating to say the least. Ms. Wonderful said to us that these high functioning kids are often extremely bright, and they truly don’t comprehend why they aren’t in charge. It’s not that they think they are smarter than their parents (although C probably does, and he probably is), but that they just think they should have control of their world and everything in it.
Those words came back to me in force today, when after asking C to do something and he didn’t, I then told him to do it. He said, without any trace of irony, sassiness, or malice, “You can’t force me to do something.” He stated it in the same tone of voice he would use to tell us about the weather. “It’s 60 degrees outside, Mom, and by the way, you can’t force me to do something.”
We couldn’t help it; the dam broke. Husband and I laughed long and loud. We try not to laugh at C because it does make him mad (mostly because he usually doesn’t understand why we’re laughing), but this time there was no containing it. Fortunately, we didn’t have to “force” C to do the requested task, as he did it anyway mere seconds after making his statement of the world order. We snorted away while all the while, in the back of my head, I acknowledged what I’ve really known all along: C is in charge, but I’ve got to do my best not to let him figure that out.
Oh, how our children love to surprise us and remind us that the minute we think one thing, something else comes along. How many times do I need to learn the lesson not to assume anything definitive, not to pigeon-hole my child, not to count on anything? And oh, how I love it when I get to learn this lesson the nice way, especially with a little tidbit like the one below, from C’s teacher. Even better, it came on the heels of my last blog post, about C’s not having any self-awareness. Color me WRONG!
From an email which I will keep forever…
I just wanted to let you know how proud of C I was today. We had our Class Auction this afternoon, and C had his eye on a Jeff Gordon poster that he wanted to get for his Dad. Unfortunately, another table got called to shop first, and another student bought the poster. When C’s table was called to go back and shop, his first reaction was to start to cry because he was so disappointed, but then he told me, “I just need a moment to get myself in control”. (Without any prompting by me!) So, he went out into the hall, took a few deep breaths and got a drink of water, and came back into the classroom and resumed shopping very calmly. What mature behavior from a third grader!! Kudos, to C!!
We’ve never really struggled with whether or when to tell C he has autism. At some point, we will, but it’s abundantly clear he is not yet ready to hear it. My feeling on this solidified while on our recent trip to Disneyland as we waited in the special needs line with a family similar to ours. Their 11-year-old son was so self-aware he actually told me his Asperger’s makes it hard for him to stand around a bunch of people and that the lights in some of the rides really challenge his senses.
This is not at all like my C. Self-centered? Absolutely. Self-aware? Not in the least. The universe, in C’s opinion, solidly revolves around him. He is sweet, kind, thoughtful, and yet utterly clueless about how his actions affect the rest of the world. Somehow consequences, even natural ones, rarely seem to have any influence.
So telling C that there are things with which he will struggle, and that some of those things are ones we can work on, does not seem particularly productive. For a kid who does not yet seem to grasp that he has some very special gifts as well as challenges, telling him he’s different from the rest of the herd is probably not the best idea. For the moment, all he wants is to be like everyone else, and maybe, just maybe, in that desire lies the truth that he is aware he is not in fact like everyone else. The trick will be to make him understand just how wonderful that really is.
The word “tired” is one I’d like to remove from my vocabulary, and one by which I judge myself – harshly - quite frequently. I’ve been tired for 20 years, which is neither here nor there, and despite many docs’ unsuccessful attempts to sort through tired for me, no one has every hit a satisfactory reason. Most days, I wish I did, or could, drink coffee, despite sickening at the very smell of it.
My constant state of tired makes me view parents of multiple children with an admiration bordering on fervor. How do they DO it? I marvel as I watch a Mom with a brood of little ones following after her in the grocery store. I admit to vacillating between thoughts of a friend’s insanity or perhaps her sainthood when she adopted a 5th child who has severe bipolar disorder, fetal alcohol syndrome and autism. Another family I know adopted 6 children, all with varying degrees of autism, and Mum homeschools them all. Both thankful for wonderful families like theirs and at the same time curious about what makes them tick, I’ve often compared my own unlikely sainthood to this high standard and have naturally found myself lacking.
Yet there are moments when I pat myself on the back for recognizing that we needed to stop at one, because we both wanted to and for the fact that we were both a little older (you’re welcome, Husband, for my not pointing out just how older we are, and just how much older than I are you) when we started our happy little family. While we like to think that a little bit of age made us wiser and smarter parents (it did), I, for one, have come to understand why our bodies are built to have babies when we are 17.
I am a passionate advocate for kids who struggle with all sorts of challenges. While I used to be the Mom in the grocery store wondering why a mother couldn’t control her children, I now diagnose the kids in my head and offer an understanding smile to the other Mom. These kids (and their Moms) work hard just to get through their days, and I am the first person to give them all their due credit for how they cope and survive.
Now I have finally come face to face with my own limitations in this area. I am somewhat perplexed at my own reaction to another child with autism at C’s school. Both C and this other boy are friends with the same third boy. Before C came along, it was always the other two – they’ve been inseparable for years. Now C has gotten in the middle of the two, and the other boy with autism is NOT happy. He makes no bones about his feelings for C and says things like, “I wish C would just disappear,” and “I don’t want to have C over because I don’t like him.” All of this is said to C’s face, and while C misses many social subtleties, this one is not at all subtle and C takes in every word.
So Mama Bear meets Advocate Bear. I look at this other child and have an internal battle between my urge to defend C with whatever means necessary and my desire to be compassionate toward the other child. I find myself drafting, but not sending, carefully worded emails to members of his team demanding that something be done. I then feel guilty about that because I understand the problem, and C’s nothing short of fantastic team members are all very aware of it and are already doing everything they can to calm the situation. Yet as often happens with these types of issues, the solutions aren’t working.
At what point does the other boy’s right to be who he is infringe on C’s right to be who he is? And vice versa? What to do when dealing with not one, but two kids with special needs whose worlds seem to collide in an unhappy way? If C were a different child, I might have some success in explaining exactly why this other boy is being so hurtful to him. I’ve tried that already, and not only does it not compute, but it’s getting to the point where this boy’s actions are interfering with C’s emotional well-being on a daily basis. Ultimately, after a particularly unpleasant incident in the school lobby yesterday afternoon in which the other boy told me with a certain amount of glee just how much he doesn’t like C, Mama Bear won out. I suggested to the boy that perhaps he should say those things inside his head instead of actually saying them out loud (it didn’t matter – he repeated the words in response), and came home to send that carefully worded email to C’s team. I’ve had enough of this boy’s behavior, and more importantly, so has C.
Darcy: “Do you want to wait in the car until the bell rings or go onto the playground?”
C: “Let’s sit in the car. What should we talk about?”
Darcy: “Let’s talk about how you are my favorite boy in the whole world.”
C: “We always talk about that. Let’s talk about something else.”
“Mommy, Is Jesus one of Santa’s Elves?”
Darcy: “What did you learn in school today, C?”
C: “Not really much. I knew it all.”
C: “I have to give you a compliment, Mom. You are so precious.”
Darcy: “Thank you.”
C: ”You are a pleasure to be welcome.”
“If you were me and I gave you a bag of eggs and told you to put them away and you didn’t know about eggs what would you do with them?” Umm, where did I put the groceries???!!!???
“I haven’t gone poop in a long time. I’m just storing it up in there.”
“That is awesome. Dog is a math-solving-dog. He knows 1+1.”