Archive for October, 2008
I have been on the receiving end of the “trick” part of trick-or-treat. C did something very bad on the computer today. Talking to predators? Nah. Posting mean videos on YouTube? Nah. Looking at porn? Nah. Just clicking on one of those annoying little messages that say “CLICK HERE for virus protection NOW!” which immediately shut down the computer after downloading some nefarious files. It booted back up, and then I mistakenly clicked on a message that came up upon rebooting, and downloaded the rest of the viruses myself. From that point I couldn’t do anything – I couldn’t get get into my virus program nor get anywhere on the internet.
It’s now 6 1/2 hours later, $100 later, and we are back online. I watched with great trepidation as I gave remote control over to a Symantec/Norton employee who was likely working from India. She swiftly maneuvered around my desktop, deleting and reconfiguring all sorts of wicked looking files. All my settings have been altered, and everything looks weird. But I’ll leave that for tomorrow (actually, now today, given it’s almost 1 a.m.) to figure out, along with some new restrictions on C’s computer use – at least until he learns how to fix his own gaffs.
I seem to be going through a phase I think many of us parents go through at some point in our kids’ young lives. There’s a point early on, where you know there is a limited amount of time as their young brains develop and patterns are formed. You run from therapy appointment to therapy appointment, and sometimes your child’s whole life seems to be full of therapy appointments. My son, for one, has always loved and continues to enjoy therapies. He works better with adults than kids, and he loves nothing more than someone completely focused on HIM. At some point, however, I began to wonder if he has reached the point where therapies no longer do much for him. In part because he is who he is, and another part because the other kids are who they are.
I listened to a little boy tell C this morning that he was annoying, and later realized C would probably never say that to another child. He might if the child was in his face, but I still don’t think he’d say it in that way – he would say it in his own defense instead of as an offensive move against the other kid. If he’s mean to someone, it seems to be out of ignorance or true misunderstanding. He doesn’t ever seem to be mean simply for the sake of being mean. I don’t take any credit for this as I know it has far more to do with his diagnosis than any great parenting on my part. I just don’t think he ever looks at someone and calculates how to hurt their feelings.
So as I’m pondering the wisdom of signing the form that came home requesting his presence in a friendship group at school (which was discussed at his IEP meeting), I find myself wondering if it will do any good. He’s quirky, he’s sometimes awkward, and he can certainly irritate other kids, but I’m not sure more therapy or a social group is going to change any of that. C is who he is, and I think he’s the most delightful child in the world. I wonder if he’s been coached enough, scripted enough, prodded enough, and prompted enough to just let him be.
C’s autism “things” are not always completely obvious to the general observer. Many a time, when I’ve shared his diagnosis with someone, I hear, “Really? I had no idea!” I then challenge them to watch him in an unfacilitated situation, such as recess, the park, or a birthday party. Yet his excellent speech continues to stump people who expect kids with autism to be silent, and his outgoing personality adds to that confusion. For C, it’s an exercise in extremes. Sure, he’s outgoing, so much so that he’d talk to Freddy Krueger in a dark alley. And while I love his friendliness, it’s also one of the biggest concerns we have about him.
I also love C’s tendency to wear his emotions on his sleeve. You know how he feels, and he generally moves through his feelings fairly quickly. He feels it, and then he gets over it. Yet sharing every feeling one has whenever one has it is not particularly acceptable in 2nd grade. We worked on restraint last week in preparation for today’s “Best of the Best” math contest at school. He has a tendency to cheer, yell and jump up and down when watching a contest. He’ll root for anyone and everyone with passion. But when he’s in that contest, watch out. His competitive streak has gone from zero to 60 in no time, and has brought with it a whole host of other new behaviors such as fibbing, cheating and being a sore loser. His teacher warned us last week that he was cheering for himself when HE got a question right in practice sessions, therefore distracting everyone else and making his fellow competitors feel bad. Many social stories later, I felt pretty comfortable he wouldn’t be too giddy if he did win and probably wouldn’t have a fit if he didn’t. So off I went today, to watch with other parents while he competed in the Best of the Best. He was wiggling all over and barely able to contain himself, but he did it. He was thrilled to be part of the competition and didn’t care that he didn’t win.
But then I started to wonder. It’s a conundrum, really, as everyone expects so much from him simply because he is able to do so much. I still find myself being glad he looks 4 instead of 7 1/2 when we’re on a plane; I think people will cut him more slack when he’s doing his “I have autism but most of you probably think I’m acting like a 4 year old” thing. I struggle with thinking the typical world is trying too hard to make him fit into the typical world, and I don’t want him growing up thinking the world around him has tried to change the very being of who he is.
A scourge has hit our household; one with the destructive force unparalleled except perhaps by locusts or tornadoes, although I see the similarities, quite frankly. “Defiance” with a capital “D” has landed in our roost. I’m not sure exactly when it started, yet I suspect if I really sat down to analyze it I would see the precursors many years ago. At first I thought it was perhaps a delayed developmental stage, but this two year old “NO” kind of thing is way past its time, delayed or not.
Usually no one but Husband and I witness C’s most deplorable behaviors, so I admit to sometimes needing a reality check about how bad (or not bad) they truly are. People (translation: my Mom) tend to be skeptical about the extent of problematic behavior we experience at home, mostly because he rarely exhibits it elsewhere or in front of anyone but us. Enter a road trip, complete with Ga (aforementioned “Mom”), C and I last week during fall break. San Diego called, and we wanted C to see the ocean for his first time. The trip was great; Legoland, Sea World, and the beach all competed for the most fun day, and C did really well handling it all. It wasn’t until the last night, probably completely worn out from the week, that C pulled his worst behavior out of his hat. My Mom was stunned. It prompted a long conversation after C fell asleep about what’s been going on at our house. C repeated the behavior the next morning. A screamed “NO, I WILL NOT DO THAT!!!! AAAAAHHCCKKK! I WILL NEVER DO ANYTHING YOU ASK ME TO AGAIN!!!” complete with other gobble-dy gook I’d rather forget left Mom speechless.
We piled in the car and came home, leaving Husband and I to do a behavior boot camp this weekend. Lots of long faces from us and talks about being respectful, a few toys lost, some favorite shows erased, and the jury is still out as to whether we’ve made any progress. Like other problematic behaviors we’ve experienced in the past, this one will hopefully go out like the tide. I’m just worried about what comes in after.
I never liked the movie Rainman, even before having C. Husband always did, and his uncanny imitation of Raymond saying, “Got to go to K-Mart,” freaked me out long before we had a child who said things just like that. Since having C, I’ve become aware of the controversy of the movie for its stereotypical display of a person with autism. There are days, however, when C is more similar to the character than not (see my post about “Dennis Days” here).
Perhaps my favorite movie with a neurologically challenged character is Forrest Gump. It took on new meaning when C was born with developmental issues and we wondered what kind of life he would lead. What I loved about Forrest Gump was the lifetime relationship of Forrest and Jenny. Their friendship and special bond was so heartwarming to me even before becoming a parent of a child with challenges. After becoming that parent, I’ve spent many fretful moments hoping there would never come a day, even after Husband and I are gone, that C would feel all alone in the world.
As I sorted through the papers from C’s desk recently, I was reminded of little Forrest finding his way through life with his special friend. I found snippets of paper from C’s friend S who visited for a playdate a few weeks ago. A wonderful little girl who seems to listen to everything C says and is interested in it, she left several pictures behind. I found one that said, “I know C loves me.” Another, in C’s writing, said “S” with a heart around it.
It seems she is Jenny to his Forrest.
When I was younger – in my teens and 20s – I had no fear. I called myself “Wild Woman” and meant it. I wasn’t a party girl or anything like that; I simply did what I wanted to do and didn’t worry about anything. I’d fearlessly take off in my Jeep armed only with a topo map in search of mountain graveyards (my interest in graveyards belongs on another blog altogether) few eyes had seen in recent years. I protested and rallied for everything as minor as my alma mater losing its D-1 tennis team to things more life altering things such as a woman’s right to choose. I had opinions and I rarely hesitated to speak them.
Yet somewhere along the line I lost that fearlessness, and confused having an opinion with being confrontational, which I never have been. I do believe I have an ability to see both sides of many issues, which I have blamed for my inability to speak up about much of anything of late. But it’s not that simple. As I fret and worry over things I’ve said to people, wondering if I’ve inadvertently offended anyone, I find myself becoming bogged down in fears about saying anything at all.
It’s only recently that I’ve become aware of how watered down I have become. It started with Husband, on a rare shared walk through our neighborhood. I don’t remember our topic of conversation, but I found myself trying to convince him I still am that Wild Woman I used to be, although in a different format. I realized I had no backing argument to support the claim, and it disturbed me. Sure, I’ve fought for C when he needed me to. Yet somehow that doesn’t translate to my being a wild woman, because fighting for our kids is what we do. I want more. I want to speak up again when I don’t have to; throw my opinion in the ring when there’s no point in doing so – simply to be a person again. A person with opinions, views, thoughts and concerns worth expressing.
So this morning, when I read a blog post in which the writer talked about children with diagnoses as being “defective,” I couldn’t let it pass. So disturbed and offended was I that I had to respond. Perhaps that parent truly felt that way about her child, and if she did, I feel sad for her. It’s certainly her right to use whatever words she wants to, but I won’t have anyone use that word about my child. Ever. But this wasn’t really about her, or her words; it was about me learning how to say things again. I responded, gently, as we parents need to be kind with each other. I felt proud of myself. I had an opinion, I voiced it. I spoke up.
I have my spine back. I knew it was in there somewhere.