Posts tagged ‘asperger’s’

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.

February 22, 2012 at 5:27 pm 9 comments

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.

December 12, 2011 at 3:33 pm 9 comments

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.

November 16, 2011 at 4:01 pm 8 comments

In case you haven’t figured it out…

…I seem to be on a blog sabbatical. Perhaps a permanent one. But you can always reach me by leaving a comment on any post, and I will respond.

     In the meantime, I’ll be trying to figure out just what we need.

August 20, 2011 at 8:55 am 4 comments

Summer dreams make me feel fine…

     It was with great trepidation that we signed C up for swim team this year. Our club has a program where the inexperienced swimmers can be on a junior team where they all get ribbons and no one gets disqualified. We’ve had little success with these types of experiences before; karate (twice) was a disaster, golf lessons with a large group were worthless, cub scouts lasted one week, and all I can say is I’m glad C has never really wanted to do little league, because the thought of that experience makes me want to run screaming into the outfield. Generally these types of experiences are too unstructured, have too many kids, and are too chaotic for C to handle well. He runs around like a wild child, completely out of control and overstimulated, and then comes home exhausted and out of sorts for hours.

     But swim team. Swim team. Basically, swim team – for me – means summer. I started swim team when I was barely five, and didn’t stop until a college without a swim team sort of forced me to. Swim team defined my childhood. I know better than to think C will follow in my footsteps, but I also know swimming would be good for him. He enjoyed the pool we had in Arizona; that is, once we actually got his little face in the pool. Then he became a fish. He loves the water and moves through it in his own unique way that is both effective and entertaining at the same time.

     The first day of practice, I was dismayed to see 35-40 kids, most of whom were about 6 years old, wiggling around and waiting for the coach to get started. It was chaotic at best, insanity at worst. There was much standing in line and downtime; generally the kiss of death for C. I watched as other boys, years younger than him, somehow managed to gang up on him within minutes of practice beginning. I had to intervene at least five times, and by the end of practice I had decided there was simply no way we could continue.

     I approached the coach after practice to explain why we wouldn’t be back. Too many kids and too much downtime, I rehearsed in my head, so as not to sound as though I thought the coach was somehow to blame for the situation. I started the conversation by telling him C has Aspergers, and did he know what was? “No,” he said clearly sensing that AS involved something that would make swim team challenging. “But what can I do to make C successful?”

     “What can I do to make C successful?” Seriously? I was stunned. I hadn’t even told him of my decision yet, and he was already trying to keep us there. I honestly can’t recall the last time – if ever – someone has said something like that to me. Here’s this coach, basically a kid himself with 35 overactive kids on his hands, wanting to figure out how to keep C on board. I explained a little bit of the problem, and his next comment was even better. “I can rearrange things so he’ll be more comfortable. We will do whatever we need to do.”

     It was only because of this conversation that C happily, and successfully, competed in his first swim meet last Saturday. I have the video to prove it. Thanks, coach.

June 14, 2011 at 1:50 pm 19 comments

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.

March 22, 2011 at 6:37 am 13 comments

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?”

March 7, 2011 at 7:06 am 12 comments

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