Posts tagged ‘special needs’
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.
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.
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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