Posts tagged ‘developmental delay’
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.
Among the many changes coming up for us includes C going to a Christian school. The public schools in our newly adopted Southern city are not right for him, the charter schools are impossible to get into, and the private schools are almost all religious based. It made for an interesting trip recently when Husband and I did the “great school search,” which is a story for another post.
We haven’t brought C up in a church. I’ve always loved the ritual of church, the music, the fellowship, and the calmness. And while I’m a very religious person who prays constantly throughout the day, I’m also an anthropologist by training, and I have a hard time reconciling the flaws of organized religion with the gifts of it.
Aside from that, church has been one of those places fraught with potential minefields for C. From going up to the front alone for the children’s message, to being in Sunday school classes with a teacher not equipped to deal with C’s early sensory and communication challenges, we just never thought it would be a good place for C to hang out.
Now, however, it’s a different story. C will still stand out like he always does, but I think he’s ready to handle the personal rigors that church will present to him. Moreover, he is interested at the moment. He’s full of questions about God and Heaven. And none too soon, because we’re basically moving to church-town, USA. We will be attending a church, because that’s what people in our new town do.
In preparation for all these upcoming changes, I started talking to C about prayer. From the prayer circle in his new class – where at least once a day the kids join hands and share their prayers of concern or thanks – to Sunday school at our new church, C will need to be comfortable with his newfound religion. So I told him about prayer, why people do it, why I do it, and what it means for different people. We got down together on our knees the other night and said our prayers out loud despite his being a little shy about it. Since that night, I have reminded him to say his prayers privately, knowing that he probably was not doing so. I thought I’d give it a couple of days and talk to him about it again.
Yet last night, a few minutes after lights out, he quietly opened his door and asked me a question. “Mom,” he said, “I’m saying my prayers, and I can’t remember – what’s that word you say at the end again?”
“Amen, C. Amen.”
C at his first baseball game. Go Diamondbacks!
C was sitting on a bar stool at the kitchen island the other night as I chopped vegetables for a recipe. We were talking about our upcoming move to North Carolina, and he once again expressed excitement about being somewhere new. Then he dropped this bombshell:
“I’ll bet everyone will miss me. Everyone except S. He hates me.”
C said this without affect or inflection in his voice. No clues to the emotions behind the words except the content of the words themselves.
I stood there for a moment, waiting to see if he’d add anything else before I resorted to my usual “fixit” mode of being. You see, a long time ago I actually read the book Men are From Mars; Women are From Venus. Honestly? It perplexed me. Far more a “fixer” (Mars) than a “sympathizer” (Venus), I don’t really know how to do the sit and listen to a friend in need thing; I want to help her. I’m more about solutions and finding a way to make things work.
Carefully, I spoke. “You know, C, a lot of times when people say they hate someone else, the person they really hate is themselves. S is probably very unhappy with who he is, and he’s taking that out on you. He probably doesn’t really hate you,” I said, matching C’s flat tone so as to calm any emotions that might be hiding beneath his words.
Before I finished my thought, I saw the glazed look in his eye C gets when he’s done with a conversation. I vaguely knew, in that moment, that I had failed him with my response. Instead of just listening and asking C how he felt about S’s words, I tried to explain the situation to him. I tried to fix it; not S’s words, but C’s reaction to them.
And that’s what I missed: C’s reaction. I blew it and missed my chance to have a real conversation about what it’s like to spend the day with someone who hates you, what it’s like to feel someone’s contempt simply because you have the nerve to exist, and what it’s actually like to be C. I won’t make that mistake again.
The moment is over - it’s too late to go back and fix it now (yes, I get the irony here). But next time it comes up – and it will, I’m sure - I’m prepared to be all kinds of Venus.
I apologize in advance for the length of this post, but please read through to the end. Just trust me.
November 1 is supposed to be a “communication shutdown” day in order to raise autism awareness. People are purposely not using facebook and email in order to mimic what it must be like to be autistic. Quite frankly, I find the whole exercise strange – for me, at least. My autistic child is at his communicative best on the telephone when there are no faces to distract him. I suspect someday he will be the same online, so I refuse to be electronically silent in order to raise awareness of autism. This is a time to speak up, not shut down!
The last time I was silent was a moment I will regret for the rest of my life. After being bullied, teased, and picked on for half of his second grade year, C’s teacher asked if I would be willing to allow someone to come in and speak to the class about him. She hoped to help the other kids understand why C talks too loud, why he laughs at odd times, and why he just seems different – she hoped that the kids might gain some empathy.
When I look back on the entire “event,” I am amazed at my own naiveté and silence. About the only thing done right was arranging for C to be out of the classroom during the discussion. Hindsight is 20/20, and now it almost appears as a great comedy of errors, each tragic mistake piled on top of another to create the most incredible disaster I’ve known thus far in C’s life.
Once I found out who was going to do “the talk,” I should have stopped it right there. I knew the person, did not have a good feeling about him, and had never really connected with him during his tenure on C’s special education team. He told me I should not be there during the talk. C’s teacher told me I should be. I went. Yet I was silent.
I listened in the back of the room while the talk turned into a twenty-minute free for all discussion about why the kids didn’t like C. “Oh, I know, I know!” one little girl squealed, eagerly raising her hand to share as if it was some kind of contest she wanted to win. She spoke up 11 times.
Still, I was silent.
I looked at C’s teacher across the room. Her head was down. I waited for her to speak up, to say anything. I was paralyzed while I waited for the presenter to turn it around, to get to the good part, to mitigate this disaster. I kept thinking he had to know what he was doing and he would fix it by the end. It would be okay. This couldn’t really be happening. I was silent.
As he wrapped it up, I sat there, silently planning ways I could get C out of the building before he came back to class. I thought about how I could never bring him back to school after this. How could he ever walk back in this building again? I fought back tears. I was silent.
I went into the hall to intercept C before he came back to class. The presenter caught up with me and said, with an air of fake sympathy and a touch on the arm, “That’s why I didn’t want you to be there. Sometimes it’s hard to hear the truth, isn’t it?” I was silent. “Sometimes kids just need to vent,” he concluded as he turned and walked away.
I was still silent then, because I could not speak. I simply could not open my mouth because I knew that only tears would come out. I went back into the classroom to grab C, who had slipped by me. As I walked up to him, two boys bounced around C’s desk. “We can’t tell you what we’ve been doing, but we were talking about you,” they taunted.
I grabbed C, deposited him with his special ed teacher, and went back into the classroom. I don’t remember why I did go back, but when I walked in, I heard C’s most loving teacher doing her best to erase both her silence and mine by turning the conversation around to what the kids liked about C.
“He’s really smart!” one girl said. “He’s always friendly,” said another.
I sat down, fighting back the tears yet again. In ten minutes, his teacher managed to undo much of the damage that had been done. That girl who spoke up 11 times? “I’m going to write C a note,” she said, “apologizing for being mean to him last week.”
I followed the kids out to recess, realizing by then we might somehow be able to make it okay. I still couldn’t say anything when C’s teacher asked me how I thought it went. It took me until the next day to process enough to ask her if she thought I was overreacting. This seems so silly to me now – as if I needed permission to be upset. But my asking opened the floodgates, and she cried with me as she told me how awful she felt about the whole experience.
I broke my silence. I wrote a letter to the presenter, knowing I could never face him without dissolving into a puddle of tears. I sat down with the principal of C’s school and the district special education director. Every teacher on staff heard about the incident (albeit not through me), and many approached me offering kind words. I heard through the grapevine that the presenter was distressed by my letter; he didn’t understand what the problem was. He never said another word to me again, and by the end of the year he was gone. I’m not sure if he quit or was forced to go, but I’ve heard rumors of both.
I discussed the incident with very few people. The next morning, I sobbed at my best friend’s dining room table. I cried on the phone that night to my boss. Husband, my parents, and my brother and sister-in-law all listened to me weep. A a few far flung bloggy and real-life friends received an explanatory email after a cryptic facebook and blog post of mine.
It was the single most painful experience I’ve ever had involving C. I am so thankful C wasn’t there, and I would gladly hear all of it again if it meant he never had to. It’s nearly two years later, and I know I will never forget one moment of that most disturbing day.
But never again will I be silent.
It’s been several years now, but I still vividly remember the last interaction I had with C’s principal at his Montessori Kindergarten. “It doesn’t matter where you go,” he said to me. “He won’t qualify for an IEP anywhere. He’s too smart.”
That conversation took place the last day C attended his school, a mere three months into the year. I still fantasize about sending this principal the very full IEP C has had since then, coupled with his report cards (all of which show him at or above grade level in every subject). Being smart – or being on grade level – doesn’t automatically disqualify a child from having an IEP. How is it that I, the parent, knew it, but every single professional at that school didn’t?
As recently as last spring, I began to think about the day C would no longer need an IEP. Could he finally graduate from special education? I know he’ll always be his quirky self, but is it possible he will some day no longer need services? Then C started at his new school, in his small classroom, with his very observant teacher and a special education teacher who really gets it. And for the first time in years, we had an IEP meeting that was hard for me to sit through.
It wasn’t all about how great C is doing. This school wants to increase C’s services, and increase them dramatically. While there were the usual wonderful comments about how bright and delightful C is, it was paired with comments that cut to the bone.
“C is being unfair at recess. He’s cheating at tag, and the kids don’t like it.”
“C got S in trouble when he told the teacher S had hit him when he hadn’t.”
“We can’t let him get away with things anymore just because he’s cute.”
Ouch, ouch, and more ouch. It was a sleepless night for me. I was frustrated and angry, despite knowing what they said was absolutely true. I knew I was being completely defensive - I knew it, because none of this was a surprise to me. C does cheat because he hates to lose. He doesn’t seem to notice how much it irritates other kids when he does that. And S has said mean things to him since day one at his new school, and he’s a little obsessed with S now. Saying he’d been hit was probably C’s way of lashing out at S. And darn it all if C’s dimples can disarm me to the point of distraction when I am trying to redirect, give consequences, or otherwise discipline bad behavior. Let’s face it, the kid is beyond cute by any standards, and it has probably gotten him out of various situations over the years.
But what was beneath it all was what disturbed me the most. Yes, C is doing well, he’s delightful, and he’s made astounding progress. That is always clear. What I realized, however, is that his particular struggles haven’t really disappeared as much as I thought they had. C’s challenges are simply more noticeable now because he’s in a smaller class. It’s probably not that C has been so steadily improving that his old school wanted to cut his services - it’s more likely that they just didn’t notice how much he needed them.