I must…

be crazy. No, scratch that. I know I’m crazy.

     School registration came up quickly this past spring, and I knew in my heart I didn’t want to send C back to his current school. There’s so many reasons why I felt this way: not the least of which was one of his teachers telling him God spoke in her ear at the bookstore and told her the Harry Potter books were evil; or the fact that based on one test (which “I didn’t do well on purpose because I didn’t want more homework, Mommy”), C was placed in what seemed to be remedial math (despite his being able to do long division in his head); or the fact that several of his specials teachers gave him such useless, meaningless, negative comments – without any context – on his report card. It’s more than that; it’s a feeling that despite getting straight As last quarter, the gaps in C’s education are far greater than they should be. 

     So the great search began once again. C “shadowed” at two schools. We chose one of the two, enrolled him for next year, and settled down to wait. Except I didn’t feel settled. That little voice in my head just kept creeping back in telling me none of it felt right. It grew and grew until I hatched a new plan. All of C’s schools – public, charter, and private  - went sour after a time, and some far more quickly than others. We keep moving C to a different school, either because the current school doesn’t work or because we actually move, and they all turn out the same. Some sour more quickly than others, but they all end up in the same place – the WRONG place.

     Then I saw that quote about the square peg fitting into a round hole:  The problem with trying to fit a square peg into a round hole isn’t that it’s hard to hammer, but rather that you are actually destroying the peg.

     And boom. There it was. It’s not that the schools are wrong (although some of them, frankly, are). Perhaps it’s that C doesn’t belong in school. Perhaps putting him through the stress and anxiety of trudging through school every day, never wanting to go back on Monday mornings, and feeling like the week is one hundred years long is not what C needs. Perhaps there is no school that is right for C.

     So the idea was born. I resigned my job, cancelled his registration at his new school, and started planning. C and I will start our new homeschooling adventure on September 3, 2012. Our journey along the path to what we need continues with this newest chapter, and I hope you’ll join us.

Hoop Dreams

     C is playing organized basketball. Those of you that know him in real life are chuckling at the moment. He’s easily a foot shorter than most of his peers, and he looks far more like a 7 year-old 2nd grader than an almost 11 year-old 5th grader. We managed to get him bumped back to the 4th grade team so he might at least have a chance to enjoy himself. Still, he’s by far the most inexperienced and least skilled person on his team. 

     The only reason we agreed to let him play is that this is an organization (Upward Sports – I’m a fan) that is supposed to be a supportive, less-competitive environment. It sounded as good as organized sports can get for C. We were hopeful. Nervous. Worried. All those things plus some.

     I had to sit on my hands during the first game, trying not to overwhelm C with hand signals and over-exuberance that he was actually staying inside the lines. He had it drilled into his head that he had to guard his guy, and guard him he did – both on offense and defense, and complete with constant jumping to make it harder for his opposing player to actually play. He got the ball a few times and tried to make shots, all failing miserably short of his goal. Still, overall, it was good. 

     C’s team has lost every game so far, and I’m happy to say it’s not completely due to C’s skills or lack thereof. This week, however, C’s team played a team that put all the others to shame. C was guarding a kid who was at least twice his weight, and when C stretched his arms up above his head, the boys were just about the same height. No one had much luck getting inside the scoring zone, and by the last period, we were behind 48 to 20, or something equally awful. Then the amazing happened. With only a few minutes left to go, C somehow ended up with the ball and drove right down the middle of the court. It was like the waters parted, and he made the shot. And then he did it again. And again. And again, ultimately scoring 8 points.

     What became clear to me in that moment was that the opposing team’s coach, recognizing that there was this tiny little guy trying his best to connect the ball with the hoop, had told his team not to guard C any longer. It wasn’t done in the spirit of, “This kid is so bad he doesn’t need guarding,” but rather, “This kid is trying so hard, let’s help him be successful.” The crowd – from both teams – went nuts. The refs were grinning ear to ear. C was so excited he jumped up and down like a jumping bean. 

     I’m not sure of that coach’s name, but I hope that he knows he did a really, really good thing that day. Somewhere, somehow, that karma is going to come back and get him, and I’m hard pressed to think of someone who deserves it more.

I’m going straight to you know where

     We suffered through the school Christmas pageant last week; happily it wasn’t as painful as I expected it to be. There was definitely no Santa – far too pagan – but there were some familiar Christmas carols coupled with the seriously uncomfortable older kids playing Mary and Joseph with their plastic baby Jesus. C dutifully rehearsed his two lines (he was one of many narrators) and was all ready to speak them slowly into the microphone. “With sheep, cattle, and a manger,” he read, “baby Jesus arrived on a very special night.”

     It was all very sweet and good. But I miss the days when school plays were more entertaining – when some kid knocked over the set, sat down and cried, or stole the show. C’s kindergarten play was priceless. C was a pumpkin in a garden full of vegetables. He hated the hat he had to wear (sensory issues), and try as she might, his teacher could not get him to keep it on. He spent the entire play tipping forward, letting his hat fall, and then picking it up, putting it on, and starting all over again. It was hilarious. At the end of the play, C got stuck in front of the curtain and laughed with a joy and abandon that will forever make that video one of my favorite treasures.

     When I listened to C rehearse his lines for this year’s play and discovered his mistake, I admit to not working too hard to correct it. I probably should have; the mistake was irreverent in its tone, but the innocence of the misspeak was too cute to worry over. We let it go. To draw attention to it probably would have given C a self-consciousness he rarely exhibits, and we didn’t want to stifle any of his enthusiasm. So we held our breath when C proudly got up to the microphone and said, “With sheep, cattle, and a MANAGER, baby Jesus arrived on a very special night.”

     Honestly? I don’t think anyone really noticed. Everyone was so focused on watching their own kid I don’t think people really listened to everyone else’s. But Husband and I chuckled and reveled in the return to the joy that should be a school play. Complete with sheep, cattle, baby Jesus, and his own special manager.

Mom interactive

     Not that I would ever be a “typical” mother, but I am most definitely not one given this child of mine. While the days of being the only mother at the playground actually up on the equipment with the kids are long gone, I still do some version of this now. Often on these lovely fall days, while the neighborhood moms are hanging out in someone’s front yard, I am facilitating C’s interactions. “He’s doing fine,” I hear on many occasions. “They’ll work things out.”

     And there it is: the grand difference between us – the idea that the kids will work it out. Actually, mine won’t. Yours will – they’ll bicker and fight and be best friends again five minutes later. C, however, will often alienate kids because his negotiating, problem-solving, and compromising skills are significantly less developed than the kids around him. An argument over a ball can have life-altering consequences for C because your child won’t want to be friends with him after it’s over. Or C will lose it and start crying, and the other children will stare and snicker at his socially “inappropriate” behavior. And they don’t forget. No matter how many times you tell me that all kids do that, you simply don’t understand that my kid does it times ten. And the all kids you are talking about are generally half C’s age.

     This is where I get angry. Because if C lived his life in a wheelchair, you would do everything you could to make sure he is fairly included in every activity. But because his disability – and yes, in this area I have now painfully come to conclude that for C it is a disability in many ways - is invisible, no matter how much you talk to your kids about accepting his differences, they still don’t want to be around him a lot of the time. Friends who couldn’t get enough of him months ago can now hardly be civil to him. And he doesn’t understand why.

     Then I feel guilty for being angry. Because you have in fact talked to your children about accepting C’s differences. You have talked to them about being kind to him no matter what. Your kids are nice kids. What I’m asking of your kids is often more than I can do myself; I get just as annoyed with C as your kids do. He doesn’t back down, he won’t drop an argument, and he won’t give you your space when you ask for it. I, like no one else, understand how frustrating it can be to be friends with C, despite his endless kindness, thoughtfulness, and genuine fondness for simply everyone he encounters. You have to work really, really hard to be friends with C, and most kids just aren’t capable of that level of effort.

     Then I get angry all over again, because C is a kid who will play with anyone and include everyone. The same can’t be said for the rest of the world, and definitely not for the rest of the neighborhood. So I soldier on, facilitating interactions and trying my best to help the other kids relate to my own while at the same time trying to teach C how to navigate the social waters of life.

     One Mom summed it up by saying that we are trying to teach our kids tolerance. And while I agree with that sentiment, I’m not sure that I agree that any of us are having any real success.

He knows if you’ve been bad or good

     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.

You say Levicious, I say Leviticus

     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.

Completely uninterested, thank you very much.

     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?”

What’s it going to take?

     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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Spongebob strikes again

     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.

The well is running dry

     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.