Saturday, May 24, 2008

struggling in uncharted waters

As I travel down my given road as a Mom to a child with Asperger's syndrome, I'm constantly learning, constantly trying to teachers would say, "monitor and adjust". I find, through talking to other moms of kids on the spectrum, that every child is affected so differently. Therefore, the moms are affected very differently as well, in some ways. There's certainly no guidebook on "How to Handle Your ASD Child", that's for sure. If you find one, buy it for me and I'll pay you back, ok?

I wish almost daily that somehow I could just open up Big A's brain and look inside. But if I did that, I'd also need to somehow understand what I was seeing, and be able to think and feel things the way he does in order to truly know where he's coming from. Since surgery has not yet progressed to that point, obviously (LOL), I make do with a precarious balance of 1) trying to parent the way most "regular" moms would and 2) trying to be insightful and respectful of how he must feel and the ways in which he needs to be treated differently. Saying that it's rough sometimes is the understatement of the year.

This morning, we had one of those rough patches. Tball has been, for A, such a success and good experience so far this season (little E is a different story for another day.......). But this morning, something happened which I really, really hope will not spoil the rest of the season for him. With 2 children on the team, I obviously can't watch both of them at every moment. DH and I happened to both be looking at E when we suddenly noticed A and the coach walking toward the bench from the outfield, and A was crying. The coach was saying, "he's ok, there's no blood" so we ran over to find out what happened. A was able to tell us that his teeth hurt, and that he'd run into a girl on the team as they both went for a ground ball. He was crying pretty hard, in his usual frantic, hyperventilating sort of way. A seemed so worried about his teeth, saying they really hurt, but I checked and they were not loose or out of place at all. We went to an unused Tball field nearby, and hugged and talked to him, trying to calm him down.

The problem is this: he gets so very upset, and is virtually unable to calm himself down. He enjoys Tball, and I know he wants to play, but he got so scared by this incident that he just couldn't shake it. With a typical kid, you might use the "shake it off, you're ok" approach and hurry them back out there to the field. I know that NT kids sometimes take their cues from how Mom reacts.....if they see you upset or worried, they follow suit, and vice versa. But A is too cerebral, too sensitive, too "deep". I don't know how to describe it, but those tactics just don't work with him.

I tried a rational argument approach, explaining how what happened was just a freak accident and wouldn't happen again so he did not need to be afraid to get back out there. Nada, just started him crying even more. I tried the old analogy about "get back up on that horse", but again, he just cried harder. I know that, no matter how I try, I literally cannot understand what he thinks and how he feels. And I try desperately to never belittle his feelings, but to respect them and allow him the time and space to do what he needs to do. He was just very, very scared of it happening again if he went back out there to play again.

But this is the world of American sports culture, obviously, and he's on a team of 90% boys and he's the biggest and oldest one of them. I'm sure it does wonders for his social standing among them when he goes into hysterical, fearful crying over something that most of them think is "nothing". The feelings and the fears are very real to him, I at least understand that much. But it seemed like no matter what approach I took, it made things worse. The only thing that helped was just letting him lay down on some unused bleachers and cry until he was ready to stop.

Hugging him and sitting him in my lap for cuddling.....nope, he arched his back and cried more. And he's so big and strong, I was afraid I'd drop him. Using the "your team needs you, you're a good helper because you're the oldest, etc" tactic went nowhere.....he just pointed out who else on the team is 6 and could be that helper. And the coaches seem baffled and perplexed too, and I don't know what to do about it. This isn't the first time he's had a meltdown in Tball this year, this was just the worst one. When it happens, the coaches (who are nice people, don't get me wrong) seem so taken aback by it, like they don't know how to react. They'll just come over to us and ask if he's ok, try to either tell him "you're ok buddy" or joke around with him, neither of which works. I'll say something vague and stupid like "he just gets upset easily" or whatever, but I think we're going to need a better explanation, effective NOW. Wish I had the coaches' email address, because discussing the ASD with them in person won't be fun. Plus, I always fear about unintended repercussions that might come after I never know who might feel like he doesn't belong on this team or in this league, or want to treat him differently in ways that neither he nor I wants. But you know they've got to be thinking "WTF is going on with this big 6 year old boy and the crying?"

This whole post has been one big disjointed ramble, and I'm sorry if it made no sense. Thanks for staying with me, if you made it this far. Lord, I just wish I knew the right way to react to A when he gets this upset. I worry that if I let him just sit out the remainder of the game, which is what we did today, then he's missing out on the lesson of getting back up on that horse, bouncing back after a stumble, etc. But there's always that wall, for lack of a better word, between his true feelings and true motivations and my understanding of them (or lack). I want to validate him, allow him to self-soothe, and I'll just have to hope I've made the right choice. Now, let's just hope that Thursday night's Tball practice goes better, or that he's even willing to get back out there ever again.

Friday, May 23, 2008

simple pleasures

Friday night, 10 pm, and no alarm clock set for the morning.

I'm done with school, and the rest of my family has a 3 day weekend coming up for Memorial Day.

My boys are asleep, all 3 of them. DH and A in our bed, E on the floor in a version of a sleeping bag that he insisted on creating. All 3 are snoozing peacefully.

I can sit on my butt in front of the computer--posting, blogging, and playing Super Collapse---for as long as I wish, because of the "no alarm" morning.

Last but certainly not least, I'm munching on leftover pizza and listening to my TV hero, Keith Olbermann. The man is brilliant, and tonight's Special Comment about Hillary's stupidity is absolutely priceless.

There's always stress, always things to worry about, but for right now, life is good. :)

Thursday, May 22, 2008

scary reading

I'm a Newsweek nut, I admit it. I keep that subscription renewed faithfully, even when so many other magazines I may have gotten over the years have been allowed to lapse. My ritual is to read it at night, while soaking in a really hot bath after the house has gone to sleep.

I found something striking and scary, though, in the most recent edition. The cover features a picture of a young boy, and the headline "Growing Up Bipolar". In particular, a few sentences stood out and grabbed my attention:

At day care, he terrorized his teachers and playmates. He wasn't the biggest kid in the class, but he attacked without provocation or warning, biting hard enough to leave teeth marks. Every day, he hit and kicked and spat. Worries became guilt. Amy had been overweight and dehydrated in pregnancy. Was Max so explosive because she had done something wrong?

Sound familiar? Other than my name's not Amy, and my son's name is not Max, this could almost be us that they're writing about. Shudder.......

In my gut, I truly don't believe that bipolar is what we're dealing with in little E's case. I really don't. But the ironic thing is that it has crossed my mind, and earlier yesterday I was describing his "possessed state" to someone who said "hmm, sounds like bipolar". Then, I read this article. Just the thing a Mom needs to hear, huh?

So much of the rest of that article very clearly does NOT describe E. Even when the behavior that Max exhibited when he was E's age doesn't all match, and Max was/is much more severely hampered by whatever he's dealing with, but still.....this is just so scary. The thought of heading to Kindergarten in just one year fills me with dread. Oh, and not to mention that I just might be teaching at that school when he arrives. Great, here comes her child, you know, the wild one who doesn't listen and has no remorse for what he does wrong. Yes, that was the comment written for me by his preschool teacher today: no remorse when he does something wrong. No surprise for me, I see it that way almost all of the time. He'll say he's sorry when told to, sometimes without being told to, but that doesn't mean he really feels it or even knows what it means.

I just hate this feeling, the dread in the pit of my stomach when I go in to pick him up in the afternoons. And knowing somehow that nothing much will change after next week's appointment with the developmental ped. She'll just say "he's young, he's immature, he needs structure." Structure. Ooh wow, never thought of that.

Monday, May 19, 2008

on days like these.......

.....I love living in the Lowcountry. :) We had such a fabulous family day yesterday, practically a typical, normal family day in this beautiful part of the world. It's about a 45 minute drive to any of the gorgeous beaches around here, so yesterday afternoon we drove down to Folly Beach. We didn't take anything but ourselves, just parked at the pier and walked out onto the sand in our regular clothes, no swimsuits or anything like that.

We told the boys they could put their feet in the water if they wanted, and we took sandals off to feel the sand, etc. Well, except for little E......didn't want to put feet in the water, didn't want to take shoes off. But he did want to dig in the sand and collect shells, so that was ok. Big A, on the other hand, ended up doing a bit more than wading into the water.

He has always, always loved the ocean and being in the water, even as a baby. And yesterday, he just kept going a little further in, jumping over the tiny bits of waves that made it into the shore, kicking his legs up high, almost dancing in the water. And I could barely hear him singing over the loud winds....singing the church choir anthem we had performed yesterday morning. Don't ask, LOL.

Needless to say, after about 15-20 minutes of this, his shorts were completely soaked and dripping. Oh, and the bottom half of his shirt too. But he didn't care, he loved it. He had to ride home in the van wearing nothing but the still-slightly-wet underwear, and covered up with coats, but that was alright.

We walked out onto the Folly Beach pier after playing on the sand......we saw pelicans, people fishing, even a jellyfish that had washed up onshore. Driving home after that, I just reveled in the beautiful scenery that I never seem to get tired of around here--the gigantic live oaks, the "spanish moss" in the trees, marsh grass growing tall out of the pluff mud......I just love it. DH and I had a debate one time about which type of scenery we prefer--mountains or Lowcountry/coastline. No question to me, it's the Lowcountry. The herons, tidal creeks, palmettos, the list is endless. I don't think I'd ever want to live anywhere else. And same for my boys, getting to grow up down here and learn to crab, fish, seeing alligators and turtles up close (ok, not too close).......I'd hate the thought of them missing out on that. We're truly lucky to be here, and to think it all happened because of that first teaching job I got back in 1993.

Friday, May 16, 2008

Ok, I'm officially petrified

petrified: so frightened as to be unable to move; stunned or paralyzed with terror.

Yep, that about sums it up.

Why, you ask? Well, I've officially applied and submitted by resume for a job that just came open on Wednesday. I've been out of the full-time teaching world since 2001, when Big A was born. And I've told people, more times than I can count, that I really don't ever expect to get back into teaching full-time, precisely because of A and E. I'd figured there was just no way to do it, because I both want and need to have time to be a Mom..........don't want to see my kids getting to school at the crack of dawn, and then staying at the after-school care every day waiting for me or K to get out of school and pick them up. That's just not acceptable to me.

But possibly, just possibly, the stars have aligned themselves in such a way that I might be able to do full-time teaching AND have a schedule acceptable to me for my family. The job opening is for a music teacher at A's amazing school.

It's really been a progression, though, over the last 48 hours, in terms of how I feel about this. It went something like this:

First moment of reading the job posting--Hell, no, there's no way.

About 10 minutes later--hmm, do you think, maybe........?

30 minutes later--write to the lady who's leaving to ask basic questions

Later that day--heart's racing with excitement, OMG I have to have this job!

Yesterday--I bet a lot of other people are going to want this, and I don't have much of a chance anyway, but I still want to try.

Today--I still want it, I think. How can you really know about something that's this different from anything you've ever done?

Enter the petrified phase. OMG, how am I going to handle this job if I get it? It's going to be soooooo much more school work than I'm used to, and the expectations around there are sky-high. What if, by some chance, I get it and then am a gigantic flop? What if I lose my freakin mind just trying to keep up with the workload, and have to give it up in disgrace? What if I leave my current job, deal with all of the upheaval of changing, then regret it?

I do not want to be paralyzed by fear. I am a good Band director, I know that. No miracle worker, but I know what I'm doing and have been moderately successful. But elementary music? At an arts magnet school? Including both general music teaching AND infusion? I really, really want to have confidence in my abilities, but a big part of me is afraid that this job is too much for me. No one can fill the shoes of the lady who's leaving, who started this program. But I'll be so angry with myself if I don't at least try, give it my all to get it, considering how much I love the school and the program.

See the quandary? I want to go for it, try hard to get it, but yet want to say "don't give it to me, I can't handle it, I'm not qualified". Guess I'll have to rely on prayer.....I've just been praying that if this is the right job for me, it will work out for me to get it and to be successful in it. If not, I won't even get it to start with. But I've got to try.

Saturday, May 10, 2008


Well, it'll be Mother's Day here in 1 hour and 48 minutes. My boys are going to cook for me all day............woo hoo!!!!!!!!!!!!! :) I'm sure it'll be yummy and we'll have a wonderful, restful day.

But tonight, I had one of those moments that they never tell you about before you have kids, and it was truly surreal. Little E had just gotten out of the bathtub, and came running---dripping wet---to ask if he could watch his favorite video on YouTube (*yes, he asked specifically for YouTube! What can I say? He's internet savvy!) The video is of a They Might Be Giants song called The Mesopotamians, and he is truly obsessed with this song. He can sing just about every word, and does so at the top of his lungs.

Well, I convinced him to at least wrap up in a towel before sitting beside me to watch the video. But as he sang and played air guitar, the towel slipped off.......and I was presented with the surreal sight of my 4 year old playing a mean air guitar, screaming "Sargon, Hammurabi, Ashurbanipal and Gilgamesh", with absolutely no clothes on. I must admit, I had a fleeting thought of grabbing the video camera, but I resisted. I can honestly say that 7+ years ago, before becoming a Mom, I could never, ever, ever, ever have imagined what I saw today. But all I could say now was "That's my boy!"

Friday, May 9, 2008

blah blah blah

That's how I'm describing today......blah. It's Friday, the morning after my band's spring concert. I'm exhausted and ready for school to be over (after today, I'll have 5 more days to go). And it's pitch dark outside and pouring rain. Talk about lack of motivation to do anything......I just want to collapse onto the couch and watch mindless TV all day. Please don't make me go to school!!!!!!! Oh, and the concert pretty much sucked too, including a McGyver-ish incident involving masking tape and a random piece of metal I found that I had to use to rig an instrument back in to playing condition just so we could continue. Guess I should appreciate the fact that we are able to perform a concert at all, considering the fact that we only have 12 kids and no bass instruments. But DH and the boys were there last night, too, so I was a bit more embarrassed for them to see the reality of what I deal with every day. Guess it's a good thing that our school community (teachers, admin, etc) doesn't know any better or expect any more of us than they do. Many of them were there last night and just raving about it, hugging me, etc etc etc........but I just felt blah. :(

Saturday, May 3, 2008

One small step for man..........

......or maybe I should have said "woman", LOL! :)

I took my band, such as it is, to their first real band contest yesterday. It's called Solo and Ensemble festival, and the SC Band Directors Assoc. holds the event at 4 locations around the state. Our nearest one was just 15 miles up the road (ironically, a stone's throw from my own house!), so thanks to a brilliant idea from DH, I decided to try the contest this year. It's supposed to be for small groups; you go into a regular classroom (not like an auditorium, etc) and then play for one judge and get a rating. 1 is best, 5 worst. It's like you're competing against yourself, rather than other groups. There's no 1st place, no "winner" etc.

It has taken some time, and major salesmanship on my part, to sell the idea to my band (which right now consists of 12 people). "Come on, it'll be fun! We can ride the short bus to get there, hopefully win a medal if we get a 1, even go next door to the school to a fun park place with an arcade, race cars, putt putt, etc". And to convince them all that we really needed them, how integral each one was to our performance, what the judge is looking for, why we have to dress up, how the scoring works..........the list seemed endless.

Fast forward to yesterday, Contest day: 9 of my students traveled with me on the short bus (with yours truly driving!) to the fun park and then to the contest. 3 students were missing, and 2 of them had valid reasons why. One is just slack! But anyway, the 10 of us went and had a blast. No bus breakdowns, I didn't hit anything, we were on time to all locations, no one got hurt along the way. At the fun park, we had the race car track all to ourselves.........guess who came in last? But that was ok, we had fun. Played air hockey and arcade games, ate bad concession stand food, then they changed into their dress-casual stuff and we went over to perform.

It was just really cool seeing "my kids" in the realm of real band events. It's one thing for the 12 of us to play for school pep rallies, have our own little concerts, etc, but to see them as they get to see first hand what other band kids from other schools just take for granted, that was really nice for me. We warmed up and tuned outside, as the inside warmup area was a total zoo. Playing outside was nice, until the sun started to go down and the lovely Lowcountry gnats attacked!!!!!!! Wish I had a video of the kids swatting gnats off of their legs while trying to play an instrument at the same time!!!!!

I wrote a note to our judge, and enclosed it with our music so she could have the back story on us and know why our situation is unique (aka--so she'd give us a break and look at us a bit differently, because we are). I could tell the kids were nervous, but we did our thing and then stepped into the hall where you wait for your score. It came out, with another sheet paperclipped on top, so I slid the top sheet away............and it was a 1!!!!!!!!!!!!!! OMG, we did it! This is something we really needed, a chance for my kids to win something and really get to brag about it back home. Our school wins every athletic award known to man, and even gets new awards invented for them (I'm not kidding), and though our medals are small, you better believe there's going to be some serious bragging going on next week. Big time bragging, and deservedly so, if I may say that. It's our turn, people! Step aside, volleyball/crosscountry/soccer/golf/lacrosse/tennis/wrestling and all of the rest of you!

I'm so proud of the kids; their behavior, performance and everything else. And I'm hoping that this taste of success and seeing the band world beyond our little classroom will really just make them that much more interested in doing it again and seeing more of that world. A girl can dream, right? So like I said, one small step, and it's hopefully just the first small step of many more to come!