I have had to force myself to limit the Pokemon conversation that is a constant in our lives these days. I let C tell me about two Pokemon, or talk for five minutes, or ask three questions. But when we’re done, he inevitably asks, “What should we talk about now, Mom?”
I admit to being at a complete and utter loss at how to answer this question, and it leaves me pondering just what it is I discuss with other people all day and how those conversational topics are set. Having to “pick” a topic of conversation reminds me of an awkward first date, because you know if it’s that hard to find something to talk about, the relationship will never work. Since this question mostly comes up in the car after all other topics are exhausted, I generally say something about just enjoying the ride and looking out the window. This seems like a cop-out to me, but I’m baffled as to what to say. I’m so used to conversation just flowing that being forced to think about how it does so renders me mostly mute.
I’ve tried the conversation starters, and they work for a moment or two. Once C even surprised Husband and me by suggesting we share one thing we liked about our day over dinner. God love this child – he is trying as hard as is humanly possible. It’s not that C is trying to hide anything or doesn’t want to talk, but when I ask him what he did in Spanish class today, the answer is brief and full of the basics. He doesn’t talk about the other kids unless something major has happened, and he often misses the daily dramas that occur within the classroom around him. I pull as much information out of him as I can, but once those conversations die out, C somehow works Pokemon (or Mario, or plumbing, or trains, or whatever is his current fascination) back into the discussion, and I tend to fantasize about escaping to Hawaii.
I’ve realized that despite being extremely verbal and talkative, C has very little “functional language.” A speech therapist told us this once, and I admit to not completely understanding her message. “C has much to talk about, but much of it has nothing to do with people, emotions, social interaction, or function.” Frankly, I think we were so happy he was talking at all after years of silence (verbal anyway…the days of screeching “Pterodactyl Boy” aren’t erased from my memory), we perhaps missed the fact that his language was missing some key components.
Yet now, when I talk with some of the neighborhood kids, I realize how effortless conversation actually is for typical kids, and I revel in those moments of crystal clear communication. I’m amazed not only at what they observe (“Dog isn’t as excited to see me this time as he was last time, Mrs. P,” says the three-year old neighbor boy, while I stand there, mouth gaping open at his awareness and ability to share that information with me). Then C will say something to another parent about knowing what Wi-Fi system they have and whether their parental controls are set on the Wii and both of us have to chuckle.
Fortunately, C is extremely charming. Dimpled and smiling, he loves to talk. He’s friendly, engaging, and often quite funny. He does have friends – actually, if he knows your name, he considers you a friend – although close friends are few and far between. At this age, where kids are starting to have relationships based on more than one shared interest, C is left standing conspicuously – and often painfully – alone. I hang on to the fact that his so lovable; adults love him, and my hope is that when his current peers become adults, they will love him too.
C tends to be on one end of the spectrum or the other, no pun intended. Inevitably during the first weeks of each school year, C’s teacher will email me asking, “Does C go to the bathroom a lot at home? Because he’s going a lot here…” I have to explain to them that he will go a lot (mostly to explore) at first, and then it will wear off…then they’ll email me later in the year with concerns that he’s not going enough during the day.
Every. Single. Year.
As is his way, C tends to overdo, generally followed later by underdo. It’s sometimes entertaining and sometimes dangerous (like the kindergarten bathroom experience during his plumbing phase, where he got diarrhea so often it prompted him to ask me if everyone got it once a month). If nothing else, it’s always interesting.
This time, it’s the Bible. We knew it would happen; his previous inexposure to church coupled with an immersion into an Evangelical Christian school would likely result in a soaking up of the information like a sponge. The Bible is appealing to C as it has lots of numbers, chapters, and short clips to memorize. I don’t even have to quiz him on his weekly Bible verse as he usually has it memorized on the first day it is assigned. C asks everyone their favorite verse. It is reminiscent of his weight phase when he was four and asked everyone he encountered – and I mean everyone – their weight. We were all too happy when that one passed. I don’t think I’ve ever explained or apologized as much as I did during that phase.
But I reached my limit this afternoon after 20 solid minutes of Bible discussion – or more of a one-sided fountain of information with few spaces for breath – in the car. “I don’t like Levicious (Leviticus) or Dotonony (Deuteronomy), Mom. What’s your favorite verse you learned by heart? I already know this week’s verse. It’s _____. Mrs. T’s favorite verse is ___, and I asked her if we could learn that next week. So the Jews like the Old Testament and the Christians the New Testament, right? I think I like the Psalms. I know Pa’s favorite verse. I’m not the nicest kid in the world, Mom, Jesus is. Whose name do you say when you pray, God or Jesus? I say Jesus or the Holy Spirit. Did you pray that Mrs. T’s smartboard would work today, Mom? I did. You know you should pray five times a day, don’t you? Do you? Pray five times a day? I do.”
I finally had to ask him to stop. I could barely get a word in edgewise. We’ve had therapists tell us in the past to stop him when he’s going on and on about a special interest, all while ignoring all the cues from other people who have lost interest long ago. We’ve also had therapists tell us that we should be his soft place to fall and should engage and immerse ourselves in C’s special interests every bit as much as he does. I don’t know what the answer is, but I know I’d heard enough proselytizing for a Friday afternoon and had to call “enough.”
The Bible discussion inevitably turns into preaching. I’m used to C imposing his moral code on us – he’s a rules boy, after all – but not quite in this format. If you want to be disconcerted, try being preached at (I know it’s not grammatically correct, but he actually IS preaching AT you) by an almost ten-year old. No one is immune, except, it seems, my brother and sister-in-law. I’ve been waiting for that first “Have you been saved?” phone discussion, but it just hasn’t happened. Yet.
So, have YOU heard the good word? No? Well, come on over to our house, we’ve got plenty to share.
We’ve been waiting for it for years. Contemplating it, wondering how it would go, and thinking about the end result. Would it be awkward? Would we all be embarrassed? Would we leave something out and C would misunderstand? Would we convey the most helpful possible message to C in the hopes that he would navigate his future armed with the necessary information to be successful?
No, I’m not talking about the SEX talk. I’m talking about an equally important talk – the one where you tell your child he has a diagnosis. It’s something parents agonize about, plan for, and worry over. If you watch Parenthood, as we do, you watched Max’s parents absolutely botch their first attempt to explain Max’s autism to him. It was beyond bad. Our experience, however was the complete opposite. It was the most anticlimactic, non-event you could possibly imagine.
We kind of pushed ourselves into having the discussion simply because we were afraid C would hear it somewhere else, a la Parenthood (where Max hears it brought up during a family fight), although hopefully not in such a dramatic fashion. We are an open book; C’s friends’ parents know, the neighbors know, random people at the park know. Doctors, teachers, the people at church. It was time, but we knew C wasn’t ready.
You see, this child of ours is perhaps the least introspective person on the planet. It’s charming, at times, how unaware of himself – his actions, and the effect of those actions on others – C actually is. He is convinced the whole world loves him, and while he is incorrect in that assumption, his delightful unawareness means C is enthusiastic without care about what others think. There is no soul more uninhibited than C’s. He takes joy in the most mundane things and shows no qualms about sharing that joy, regardless of the consequences. Oh, yes, we’ve tried to redirect, calm, and make appropriate those happy outbursts, but there is no squelching it – social appropriateness be damned. C has no care, nor does he seem to understand, that he is often acting against the norm.
C has his moments; he worries about not wearing a belt to school (despite having permission to not wear one) because the other kids will notice he is out of uniform. He worries about wearing a necklace to chew on because he worries no one else does that. But that’s as far as it goes. Someone doesn’t like him? No way, no how. He won’t hear of it. Impossible. C is not in denial, but rather he is just complete and utterly unaware.
So what does one do with a child so clueless about his own special differences? You point them out, of course, gently. Remember, C, how difficult it was for you to learn to ride a bike? How much you struggle with handwriting? How much you hate it when a loud noise surprises you? “Yes, yes, and yes,” he said. And you know how awesome you are at math? How amazing your memory is? How much you like to learn each and every possible piece of information about each and every Pokemon? “Yes, yes, and yes.”
That’s autism, C. That’s what makes you so special.
“Okay. Can I go outside now?”
I was hit with a ton of bricks today, and it didn’t feel good. All the time spent making sure C was in the “right” school, all the effort spent researching to find the best, safest place; it was all for naught. Each place turns out basically the same, and I finally realized today that the common denominator is C. We can search for a nice school with nice kids. We can pay a zillion dollars in private school tuition to make sure he is taken care of and well-supervised. We can even find a Christian school where you expect everyone to be kind.
Check, check, and check.
Still, the result is the same, and ouch, does it hurt. It doesn’t matter how nice the kids are, how much money we pay, or how Christian the school is. C likes the kids – every single one of them. He considers them all friends, even ones who aren’t outwardly very nice to him. Yet it all comes down to one simple fact: The kids just don’t like C.
This became painfully obvious today – I’m still crying, hours later – when I went in for lunch. I’ve been avoiding hanging out at school, and now I realize I just didn’t want to admit to myself that all of our effort meant nothing in the reality of the problem. C and I sat at the “special” table reserved for kids who have visitors. Last time I went in, C asked each and every boy in his class if they wanted to sit with him at the special table. I listened as each and every boy said no. This is a privilege, mind you, and every other time I see a parent in there, there are several other kids at the special table with the special kid and his or her parent. Yet they all said no. Today C didn’t even bother asking.
While we sat there, C dropped something and asked a boy at the class table to pick it up since it was near him. The boy kicked it as far under the table as he could and C had to get down on the floor and under the table to get it. The boy laughed and pointed at him, and then the other boys joined in. It wasn’t overt and obvious or even particularly loud, and thankfully C didn’t even notice. Then C walked over to the class table to ask another boy a question. This was a boy whose house C went to this weekend – Mom arranged, of course. Clearly the boy was uncomfortable talking to C, and when C came back, he mentioned that as he left the boy’s house on Sunday, he whispered in C’s ear, “Don’t tell anyone at school that you came over this weekend.” C only mentioned this because he had just been talking to him. He often drops bomshells like this days later, not realizing they are bombshells at all. C clearly did not connect the comment to anything having to do with himself. “Maybe the other kids think his house isn’t nice? But that’s not true, because it is,” he said, clearly perplexed. When he told me, I fought back tears. Just get through lunch, I told myself, you can cry in the car.
It was all summed up for me. How much longer can parents arrange playdates? When is C going to really figure out that these boys don’t like him? And given he probably has figured it out on some level, how must it feel to go to school five days a week with a bunch of kids who don’t want to be around you? While I sat and watched every boy in C’s class (except his one real friend, who was not there today) snicker and giggle and whisper about him after both of these minor incidents, I realized I’d been hiding from the truth.
I’d like to go to school and talk to these boys, because of all the schools C has been in, this is the one where I thought he stood the best chance of finding his place – these are good kids in a good school. I’m not sure what I’d say to them, really, because I wouldn’t want to make it worse. I can’t make them like him. But one thing I’d like to tell them is that while they may not like him, C sure likes each and every one of them. A whole lot.
This is when I remember what the developmental pediatrician who diagnosed C told us: “If you can get him emotionally intact through middle school,” she said, “he’ll find his niche and he’ll be fine.” And I wonder to myself, just how can we do that? Where is the place that will have kids who will both protect and nurture him? Where, where will he fit in? What to do with a child who is so social, so desirous of being around other kids, but who is clearly not liked by those same kids? Public school, charter school, private school, Christian school – it’s all the same, and none of it is right.
I don’t know what the answer is, and that is why I’m really crying this afternoon. I don’t really understand exactly why the kids don’t like C. I don’t really know where the place is that would be safe and good for him, or if it even exists. All I know is that I fear C’s wonderful little world will come crashing down someday when he puts all of the painful pieces of this puzzle together. And then it will be more than he can possibly bear.
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As parents of special kids, we celebrate the strangest things. I’ve always thought we appreciate the milestones more than parents of typical kids because our kids work so much harder to reach them. Or perhaps it’s because we don’t know if they’ll ever reach them, and when they do it’s time to break out the champagne.
Tonight I’m celebrating the success of something so huge I’m surprised I’m taking it so calmly. Really, it’s passed by with hardly a discussion among the adults in the household, but still, it’s amazing, so I must take note.
C is finally using toothpaste.
And once again, like another big moment in our house (see here), we owe it all to Spongebob Squarepants, that goofy little creature who has been responsible for two of the biggest milestones reached at Casa C. While walking through the toothpaste aisle a few weeks ago, C happened to notice the Spongebob toothpaste, and he begged with desperation to buy it. I barely let him get to “Pleeeeaaaaasssseeee,” before I tossed it in the cart. I explained to him that because it had fluoride in it, he would have to work his way up to it with the baby toothpaste that’s safe to swallow. I’ve long had a tube of this baby-safe toothpaste sitting on his bathroom counter; we’ve smelled it, even tasted the most miniscule bit of it, but we’ve never progressed any further. I learned years ago that trying to get C to do something scary – especially something that revolves around his severe oral defensiveness – is next to impossible. I’m not totally crazy; I pick my battles. And since his dentist has been completely fine with him not using toothpaste, I’ve let it slide, knowing that at some point, his motivation would kick in for one reason or another.
Nevermind that I’m unlikely to allow that Spongebob toothpaste ever to pass C’s lips – I’m hoping he’ll outgrow his interest far before he’s ready to use the real stuff. It’s got more unpronounceables in it than a twinkie, and I’m sure it is a ghastly shade of yellow that doesn’t even exist in the natural world. Still, there that toothpaste sits, on the counter, while C hesitantly, but willingly, practices brushing his teeth with the baby toothpaste.
Thanks again, Spongebob. You rock.
This move has not been an easy one. Numerous reasons come to mind; all of them too mundane and detailed to bother with here. But suffice it to say we are all more than just a little homesick for lands west of the Mississippi. We’ve lived in seven cities in almost fourteen years, and while I usually enjoy starting over, I’m over it now. Still, there are great positives, and we know that. I expect in a few short months, we’ll settle in and start to love it. And if not, we’ll suffer through it for a few years until we feel like we can head back to the frontier.
Husband and I aren’t spring chickens anymore, and my own health, while far more stable than it was a year ago (see here), is still presenting challenges. Basically, I’m tired. Not just physically, but emotionally. I keep wondering when life with C will get easier – and there are a great many things with him that are, in fact, easy – but the continuing challenges have taken their toll. I fully recognize that by the time I am done redirecting, correcting, motivating, corralling (is that even a word?), herding, guiding, planning, figuring, and, let us face it downright nagging, there is little left of me to be fun Mom. I tell myself perhaps I expect too much of C, but when I’m spent just getting him out of bed and out the door in the morning, there’s a problem.
On one hand, this delightful child of mine is driving me downright Bat.Poop.Crazy. at the moment, and on the other hand, my tolerance level is low. Very low. Extremely low. You all know me; I don’t complain about my kid. I know raising a child, any child, is difficult. And I know raising a child like mine is beyond difficult, but I’m not a parent who feels short-changed with the child I was given. I feel lucky to have him, blessed to be entrusted with him, and generally feel slightly sorry for parents with typical children because I imagine it must be somewhat boring. Yet at the moment, I’m just spent, and I’m not really sure how to re-engage.
I’m annoyed before I even get C up, because for the first time in his life I actually have to wake him in order to get to school on time, and he is not fun to rouse. I devised a routine where I take Dog into C’s room, plop him on top of C and let Dog lick C awake. Dog is old, really old, and I wonder how long he will be with us. What then? I wonder. And then I get annoyed because C can’t just get up like any other kid. No, I have to get him up happy, or the day is shot. And then this annoys me – all the hoops I have to jump through just to make things happen for C.
Yes, I am a control freak. This I know. But having the child I have has furthered that trait to an obsession of which I am not proud. Yes, I do things to accommodate my child not only for his happiness, but for my own as well. If he’s happy, I’m happy. When he’s not happy, everyone pays, and pays dearly. And that payment is just not worth it to me anymore; I have no well left from which to draw.
It’s a slippery slope here. This I know. But I just can’t seem to get any traction.