Have you heard that term before? Not sure where I ran across it first-- probably in an online forum--but I can't get the phrase out of my head today. The best way I can describe an "autism angel" is that it's someone who makes a positive difference in the life of a child on the autism spectrum. Even more so, it's someone who isn't looking for accolades or glory, just doing their job, doing what they consider ordinary, but it's oh-so-EXTRAordinary to us, the families of those ASD kids.
When I stop and look, I can see these amazing angels all around me, and I'm humbled by how fortunate we are. Like the sweet concession stand guy at the minor league baseball game last Sunday night.....or should I say, the NONgame. It rained, and rained, and rained, and we stood there under an awning for an hour hoping it would stop. Dreading the moment we knew was coming, when we'd have to tell Mr. L that the game was called off. And it was, and we did, and he did.........meltdown, that is. Crying, sobbing, almost wailing. He'd asked to go to this game for his upcoming birthday, we splurged for seats right behind home plate, and now there's no game. The concession stand guy motioned K over, and gave him a bag of cotton candy for Mr. L, to try and help us I guess. I can't say that the meltdown was completely stopped in its tracks, but the cotton candy was a definite distraction, and that's almost always good. Bless you, nameless concession stand vendor!
Or how about Mr. L's 2nd grade teacher last year? The sweet young lady who freely admitted that she had to look up what Asperger's Syndrome was after I told her about Mr. L. Out of all of her great qualities, the one thing I can say that was best is that she "gets him", if you know what I mean. She's patient, listens to him even when he takes forEVER to get to the point of a story, and has learned just how to handle him with the kid gloves that are often required if you want to avoid meltdowns. And best of all? After telling me in the year-end IEP meeting that she'd think through the 3rd grade teachers and decide on one to recommend to us, she did just that. Went and spoke to that teacher privately, gave her background info and suggestions, and recommended to the school that Mr. L be placed in that class. :)
That new 3rd grade teacher even earned a spot on my autism angel list! Today, we got a postcard in the mail from her, addressed to Mr. L. It welcomed him to her class, assures him they'll have a "super year" and she is so excited to start, etc. He's been apprehensive, and I've tried and tried to tell him to give 3rd grade a chance, see what it's like before you make up your mind that it's hard, teachers are mean, etc. But after reading the postcard, he said something like "now, maybe I will begin to believe her, that it WILL be a super year". :) 4 sentences on a postcard accomplished more than I have all summer!
I could keep on listing, but I'm going to sum it all up by telling you about one especially priceless autism angel---Mr. L's baseball coach from this season. He's a pretty young guy, single, drives a cool sports car, you get the idea. K and I decided from the start not to "come out" to him about Mr. L, just to go along and see how things progressed. If he needed to know, we'd tell. As it turned out, we didn't tell until after the season ended.
But Mr. L demonstrated his fondness for meltdowns early on in the season, and Coach T quickly realized how close to the edge Mr. L stays.......one strikeout, one dropped ball, and you could be witnessing an unstoppable screaming, hitting, wailing explosion. He took extra care to be nothing but positive and encouraging to Mr. L, even letting Mr. L throw the ball at him after Mr. L was hit by one of the pitches. That broke the spell of the meltdown somehow, and made him laugh, and then everything was ok again.
During the season, in casual conversation, he learned that Mr. L loves Lakers basketball. Coach T had seen the Lakers in person a few years ago, and so he brought Mr. L some of his up-close pictures of Kobe Bryant. And now, that the season is over........well, this week I was told about yet another angelic act from the coach, and I just about started crying. Coach T plays adult softball, and as it turns out, his team plays against the team of Mr. L's former 2nd grade teacher (see above)! So she emailed us, told us she'd seen him, and that he told her the story of the playoff game that ended Mr. L's season. He was the last batter, last out, of the entire freaking season for his team. :( Coach T told the teacher that he was actually praying as he pitched that last ball to Mr. L. That he'd never wanted someone to hit the ball and get on base so badly in his life. I know that's how I felt, but to know that he did too.......
Coach T, your halo is on its way. Not a coincidence, me thinks, that your team was called the Angels. And for you, the concession stand guy, the teachers, the lady at the baseball clinic that gave us a T-shirt during the collapsing-on-the-ground meltdown, and all the rest of our autism angels.......you have my unending thanks and gratitude. Your real reward is in Heaven.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Tuesday, August 4, 2009
Saturday, April 25, 2009
Do you hear me sighing?
*sigh* What was I thinking? This always seems to happen, just when I let myself get too comfortable......
When I was taking AP English class in high school, our teacher told us something that I have always remembered, and it comes to mind tonight: She was about the same age as our mothers were at that time, and used to talk to us, advise us, etc like a mother would, in some ways. Most of us were new drivers, and she gave us advice about driving.....saying that when you start getting too confident, too comfortable at your driving, that's when you need to watch out because you'll end up in an accident. Always have to keep your guard up, don't get complacent, or face the consequences, basically.
I guess I didn't learn the lesson from Mrs. Fowler, or at least not when it comes to being an autism-spectrum parent. Instead, I keep making the same stupid mistake over and over and over again. :( People that know me or have read this blog for a while should roll their eyes at this, because it's the same old crap you've heard before. You'd think I'd learn.
So, every time Mr. L gets in a new situation, I set myself up for disappointment. Because he's doing so well, I stupidly think he can "pass" for being a typical kid..........pass as "non autistic" and that we can get by without telling people like Sunday school teachers, sports coaches, etc. I just want to blend in, is that so crazy? Just to be the regular old parent with good, rock-solid regular kids, not the one who's hanging on by a thread the way I am and whose next meltdown could be as near as the next pitch of a baseball.
Saturday was as prime an example of my idiocy as you could hope for. Living in a crazy-house dream world, I somehow thought that because last week's baseball game went so well, we could have hope for a mostly autism-free season this year, unlike the last two years. Yeah, right. Who am I kidding? Obviously, only myself, and today proves it. We played the toughest team in the league, knew we'd lose, but didn't know how Mr. L would completely meltdown when he got thrown out at first base and ended up 0 for 2 on the day.
Not sure if I can remember the last time he melted down this severely. It was horrid, he was not just crying, not just sobbing, but loudly moaning in a repetitive rhythm like "AAAH, AAAH, AAAH, AAAH, AAAH, AAAH........" and I'd say that went on for maybe 15 minutes. He was balling up his fists and hitting anything in sight, including his dad and the car doors, inside and out. Refused to go back out into the field with his team to finish the game, refused to go out for the post-game high fives with the other team. And the more anyone tried to help him, the worse it got.
One of the worst parts for me, though, is the sympathy and pity of others. And how do I explain why he's doing this? Another mom from the team latched on to me and tried valiantly to help.....gathering up my stuff so we could leave, trying to talk to him and help convince him how well he'd done, gave me a hug, even told me "God gave him to you for a reason". But as soon as she started asking to help and doing things for me, the water works opened and I started crying myself.
Now, looking back, I'm a mixture of sad and angry. Not angry at him, but at myself for the stupidity of it all. Was it stupid to even try to do coach pitch baseball? He's never dealt with "outs" before, never had winners and losers, etc. Last week was nice, when they won, but we know there will also be some losses and if they are anything like today, I know I just cannot take it emotionally. And angry about the pathetic part of me that just wants to blend in with the other parents, maybe make some new friends who don't (yet) see the big multi-colored puzzle-piece-shaped A on my chest. But again, who am I kidding? Most kids go through upsetting situations, like losing a game, etc, and they might be upset, but they learn from that. They grow over time, they mature, they learn how to cope with it and it's not so tough after a while. ASD kids.....I'm not so sure. He lives so "in the moment" much of the time, and even as good as he's gotten at talking the talk of "it's ok if we lose", when it happens, you see the result and it is most definitely NOT ok.
The sighs are still echoing over the Atlantic, even now, and this happened 48 hours ago. Sighs tinged with tears, and with frustration, and loss, and embarrassment too, as much as it pains me to say that. When a parent asked me "is there anything I can do?" while Mr. L screamed and sobbed in my arms, I just shook my head no and cried right along with him. Just closed my eyes and tried to shut out the world, to not notice the people looking at us (or trying hard NOT to look) and the way in which the team and parents quickly dispersed and got out of there....no hanging around after the game, no chatting, etc.
I guess there's not much else to say. We're gonna plod right on with the baseball season, hoping with every cell in my body that he gets on base next Saturday so that we can avoid a repeat of the meltdown that came last time. And knowing that no one out there on that field understands, no one realizes what we go through and what it takes for Mr. L and our whole family to get out there every time.....working harder than anyone else just to keep up, just to look "normal" and even to come close to a typical baseball experience. And feeling like a faker the whole time too.
When I was taking AP English class in high school, our teacher told us something that I have always remembered, and it comes to mind tonight: She was about the same age as our mothers were at that time, and used to talk to us, advise us, etc like a mother would, in some ways. Most of us were new drivers, and she gave us advice about driving.....saying that when you start getting too confident, too comfortable at your driving, that's when you need to watch out because you'll end up in an accident. Always have to keep your guard up, don't get complacent, or face the consequences, basically.
I guess I didn't learn the lesson from Mrs. Fowler, or at least not when it comes to being an autism-spectrum parent. Instead, I keep making the same stupid mistake over and over and over again. :( People that know me or have read this blog for a while should roll their eyes at this, because it's the same old crap you've heard before. You'd think I'd learn.
So, every time Mr. L gets in a new situation, I set myself up for disappointment. Because he's doing so well, I stupidly think he can "pass" for being a typical kid..........pass as "non autistic" and that we can get by without telling people like Sunday school teachers, sports coaches, etc. I just want to blend in, is that so crazy? Just to be the regular old parent with good, rock-solid regular kids, not the one who's hanging on by a thread the way I am and whose next meltdown could be as near as the next pitch of a baseball.
Saturday was as prime an example of my idiocy as you could hope for. Living in a crazy-house dream world, I somehow thought that because last week's baseball game went so well, we could have hope for a mostly autism-free season this year, unlike the last two years. Yeah, right. Who am I kidding? Obviously, only myself, and today proves it. We played the toughest team in the league, knew we'd lose, but didn't know how Mr. L would completely meltdown when he got thrown out at first base and ended up 0 for 2 on the day.
Not sure if I can remember the last time he melted down this severely. It was horrid, he was not just crying, not just sobbing, but loudly moaning in a repetitive rhythm like "AAAH, AAAH, AAAH, AAAH, AAAH, AAAH........" and I'd say that went on for maybe 15 minutes. He was balling up his fists and hitting anything in sight, including his dad and the car doors, inside and out. Refused to go back out into the field with his team to finish the game, refused to go out for the post-game high fives with the other team. And the more anyone tried to help him, the worse it got.
One of the worst parts for me, though, is the sympathy and pity of others. And how do I explain why he's doing this? Another mom from the team latched on to me and tried valiantly to help.....gathering up my stuff so we could leave, trying to talk to him and help convince him how well he'd done, gave me a hug, even told me "God gave him to you for a reason". But as soon as she started asking to help and doing things for me, the water works opened and I started crying myself.
Now, looking back, I'm a mixture of sad and angry. Not angry at him, but at myself for the stupidity of it all. Was it stupid to even try to do coach pitch baseball? He's never dealt with "outs" before, never had winners and losers, etc. Last week was nice, when they won, but we know there will also be some losses and if they are anything like today, I know I just cannot take it emotionally. And angry about the pathetic part of me that just wants to blend in with the other parents, maybe make some new friends who don't (yet) see the big multi-colored puzzle-piece-shaped A on my chest. But again, who am I kidding? Most kids go through upsetting situations, like losing a game, etc, and they might be upset, but they learn from that. They grow over time, they mature, they learn how to cope with it and it's not so tough after a while. ASD kids.....I'm not so sure. He lives so "in the moment" much of the time, and even as good as he's gotten at talking the talk of "it's ok if we lose", when it happens, you see the result and it is most definitely NOT ok.
The sighs are still echoing over the Atlantic, even now, and this happened 48 hours ago. Sighs tinged with tears, and with frustration, and loss, and embarrassment too, as much as it pains me to say that. When a parent asked me "is there anything I can do?" while Mr. L screamed and sobbed in my arms, I just shook my head no and cried right along with him. Just closed my eyes and tried to shut out the world, to not notice the people looking at us (or trying hard NOT to look) and the way in which the team and parents quickly dispersed and got out of there....no hanging around after the game, no chatting, etc.
I guess there's not much else to say. We're gonna plod right on with the baseball season, hoping with every cell in my body that he gets on base next Saturday so that we can avoid a repeat of the meltdown that came last time. And knowing that no one out there on that field understands, no one realizes what we go through and what it takes for Mr. L and our whole family to get out there every time.....working harder than anyone else just to keep up, just to look "normal" and even to come close to a typical baseball experience. And feeling like a faker the whole time too.
Sunday, August 3, 2008
Gymnastics
A great friend of mine (who I met first in cyberspace, then in person) gave me some wonderful food for thought this week. She also has a son on the autism spectrum, and always seems to have such wonderful and "deep" insights into the ASD world and our place in it.
I was whining on our ASD forum (what else is new, right?) about the strange place I find myself in as a parent of an ASD child who would be described in the lingo as "high functioning". And in her wonderful way, my friend looked at my situation and put it into perspective, in a way I'd never considered. Really, never. I live with my role as A's advocate, protector, champion, therapist and psychologist 24/7, yet until yesterday I'd never really looked at us in this way.
It's like an Olympic-caliber gymnastics competition, specifically the balance beam. My sister was big into gymnastics when we were young, and she and I have always enjoyed watching the gymnasts on TV, etc. My favorite event is uneven bars, but I digress.
So, imagine with me, if you will: A, and our family by extension, is walking on a balance beam. (did you know that it's only 4 inches wide? oops, there I go again) On the right side of the beam is the NT world, the "real" world. It's so close that we can touch it. We don't actually walk in it, but we skirt along the edge and if we lean over just enough, we can sorta kinda feel like we're in it. We can blend in, merge into the traffic of regular life and pedal like crazy to keep up.
On the left side of the beam is the ASD world. The world of ABA therapy, advocacy, RDI, 1:1, IEPs, classroom aides, special diets, and a daily life of valiant struggles and hard-won progress. We don't really walk in this world either, truth be told. A's in a regular classroom, no aides. We don't do ABA, or RDI, or floortime or VB or anything like that. No special diets, no medications, no delayed vaccine schedule, nothing. He gets speech at school, and we do a social skills group once a week, and that's it.
So, I whine. I whine because I feel like we're walking on this tiny, narrow beam and we don't belong to either of the worlds that surround us. And that means I don't belong either. Not to the oh-so-cool Moms that I see at the park, the soccer games, and church.....my life's not like theirs. And not to the brave, dedicated ASD moms I meet in person and online either. It's almost unfathomable to me what these ladies do on a daily basis, and I don't know that I could be as strong as they are, or keep pressing on if my child was non verbal, or violent/self-injurious, etc.
Bless you, dear friend and fellow Obamamaniac. You know who you are. I guess it takes someone who looks at your life from the outside to truly see it sometimes, to give that rational perspective that you may lack. What was this amazing revelation that she gave me? Well, in a nutshell, it was this: She gave us credit. Credit for the tough hand we've been dealt. Anybody who has a child on the spectrum has it tough, no question there. But when I start thinking that I've got no right to complain about A's struggles, MY struggles, now I can remember her words, like this:
"A has some pretty sophisticated expectations placed on him, because he is so very high functioning. In many ways, your life, navigating him through the NT world, is probably much more stressful than mine - because my son is always so insulated and protected from NT expectations. A has so many more expectations on him than my son does, so I totally understand your frustrations about him, even though I don't have a similar child."
I was whining on our ASD forum (what else is new, right?) about the strange place I find myself in as a parent of an ASD child who would be described in the lingo as "high functioning". And in her wonderful way, my friend looked at my situation and put it into perspective, in a way I'd never considered. Really, never. I live with my role as A's advocate, protector, champion, therapist and psychologist 24/7, yet until yesterday I'd never really looked at us in this way.
It's like an Olympic-caliber gymnastics competition, specifically the balance beam. My sister was big into gymnastics when we were young, and she and I have always enjoyed watching the gymnasts on TV, etc. My favorite event is uneven bars, but I digress.
So, imagine with me, if you will: A, and our family by extension, is walking on a balance beam. (did you know that it's only 4 inches wide? oops, there I go again) On the right side of the beam is the NT world, the "real" world. It's so close that we can touch it. We don't actually walk in it, but we skirt along the edge and if we lean over just enough, we can sorta kinda feel like we're in it. We can blend in, merge into the traffic of regular life and pedal like crazy to keep up.
On the left side of the beam is the ASD world. The world of ABA therapy, advocacy, RDI, 1:1, IEPs, classroom aides, special diets, and a daily life of valiant struggles and hard-won progress. We don't really walk in this world either, truth be told. A's in a regular classroom, no aides. We don't do ABA, or RDI, or floortime or VB or anything like that. No special diets, no medications, no delayed vaccine schedule, nothing. He gets speech at school, and we do a social skills group once a week, and that's it.
So, I whine. I whine because I feel like we're walking on this tiny, narrow beam and we don't belong to either of the worlds that surround us. And that means I don't belong either. Not to the oh-so-cool Moms that I see at the park, the soccer games, and church.....my life's not like theirs. And not to the brave, dedicated ASD moms I meet in person and online either. It's almost unfathomable to me what these ladies do on a daily basis, and I don't know that I could be as strong as they are, or keep pressing on if my child was non verbal, or violent/self-injurious, etc.
Bless you, dear friend and fellow Obamamaniac. You know who you are. I guess it takes someone who looks at your life from the outside to truly see it sometimes, to give that rational perspective that you may lack. What was this amazing revelation that she gave me? Well, in a nutshell, it was this: She gave us credit. Credit for the tough hand we've been dealt. Anybody who has a child on the spectrum has it tough, no question there. But when I start thinking that I've got no right to complain about A's struggles, MY struggles, now I can remember her words, like this:
"A has some pretty sophisticated expectations placed on him, because he is so very high functioning. In many ways, your life, navigating him through the NT world, is probably much more stressful than mine - because my son is always so insulated and protected from NT expectations. A has so many more expectations on him than my son does, so I totally understand your frustrations about him, even though I don't have a similar child."
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 observe.......like 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 tell....you 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.
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 tell....you 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.
Tuesday, April 15, 2008
One foot here, one foot there
There's a gigantic amusement park about 3 hours from here, called Carowinds. It's been there for as long as I remember. I went to it as a child, and have even taken Band groups there since I began teaching---both to perform and just to have fun, ride on roller coasters and eat outrageously-priced food.
One of the neat features about this park is that it is situated exactly on the border between North and South Carolina. Literally, the border runs down the center of the park, and it's marked so that there are places in which you can stand truly in 2 states at once. It's cool, used to be one of my favorite (geeky) things to do when I went there as a kid. Put your feet on either side of the line, and then one foot's in SC and one's in NC. :)
Well, as I drive my 30-minute commute (each way), I've got lots of time to sing, listen to talk radio, or just to think. This morning was a thinking morning, and I was reminded of this "standing in 2 states" phenomenon. I feel like I'm doing that a good bit of the time in my own life now. My two states are the ASD world and the NT (neurotypical, non-ASD) world. And I try valiantly to stay grounded in both, but it's hard.
I'm not at all wishing that little E had ASD, don't get me wrong. But I do think it's tough for parents who have at least one NT child along with their ASD child, because you've somehow got to be fair to both, do justice to both. I want A to be happy, reach his full potential, and do everything that he needs to do to make that happen. The same is true for E, but what it takes to get there may be dramatically different.
Lately, though, I feel like 98% of my body weight is on the foot that touches the NT side of things, and that I just barely have a toe touching the ground on the ASD side. Is that ok? What else does A need that I'm not doing? Am I acting as if I'm ashamed, or want to keep the ASD a secret? Maybe.
Both boys are playing absolutely-100% NT T-ball, for example. There are plenty of local special-needs sports options, like the Miracle League, etc. A parent of one of Andrew's social skills group buddies is really into that league, and pushes it on me every chance she gets. And I'm nice, I listen, when I really just want to tell her to shut up and drop it.
A is in a totally mainstream 1st grade class too. Few people at the school even know what the official diagnosis is...we're just playing along as NT, hoping secretly that he can slide by that way. He's the "quirky kid" right? The "unusual but very smart and endearing" kid, at least for now.
And E is Mr. Social, talks to everyone and wants to do everything, go everywhere. So, we try to.....try to pass ourselves off as the typical family, doing typical-kid things like T-ball, birthday parties, etc. I'm leaning, leaning, leaning onto that NT foot, feeling like the ASD foot is barely touching the ground sometimes.
If I look deeply, I think I see that the truth is this: I want to be only in that NT world. I really believe that I've accepted the truth of A's diagnosis, he IS on the autism spectrum and that's not going to change. But in daily life, I stay in the NT world and don't embrace my position as an ASD mom. I don't really socialize with local "autism people", don't do the special needs sports, don't send my son to an ASD summer camp, etc. He's going to church camp instead. Isn't this a form of denial?
A cyber-friend who lives near here asked me if we're doing this weekend's Walk for Autism. I was embarrassed to admit that I hadn't even known it was this weekend; that's how out of touch with the local ASD "scene" I am. And then I'm faced with a dilemma......Walk for Autism, or T ball game? I chose T ball game. They're at basically the same time, and we couldn't do both. And, to compound things, A really has no awareness of the ASD, at least that I know of. He's never asked THE question about how he's different from the other kids at school, and doesn't know what autism is. Last year, we did a March for Babies for the March of Dimes. Both boys knew what it was for and why it was important for us to walk and raise money. How would I explain this? I'm not ready, don't know what I'd say and don't really think I want to have to say anything. Can you say denial again?
I'm thankful to have a great group of online friends who are ASD moms, and I feel comfortable talking to them about autism "stuff".....but that's really the only place that I exist in the ASD world. I've got at least one toe firmly on the ground of Autism Island with my friends there, but that's the only place. I just can't stop arguing with myself, though.........
*He doesn't need special sports leagues? Or does he?
*He's doing ok in school, socially, right? Or am I just blissfully unaware?
*How long can I keep putting him into typical-kid situations without even really telling anyone that we're fakers?
One of the neat features about this park is that it is situated exactly on the border between North and South Carolina. Literally, the border runs down the center of the park, and it's marked so that there are places in which you can stand truly in 2 states at once. It's cool, used to be one of my favorite (geeky) things to do when I went there as a kid. Put your feet on either side of the line, and then one foot's in SC and one's in NC. :)
Well, as I drive my 30-minute commute (each way), I've got lots of time to sing, listen to talk radio, or just to think. This morning was a thinking morning, and I was reminded of this "standing in 2 states" phenomenon. I feel like I'm doing that a good bit of the time in my own life now. My two states are the ASD world and the NT (neurotypical, non-ASD) world. And I try valiantly to stay grounded in both, but it's hard.
I'm not at all wishing that little E had ASD, don't get me wrong. But I do think it's tough for parents who have at least one NT child along with their ASD child, because you've somehow got to be fair to both, do justice to both. I want A to be happy, reach his full potential, and do everything that he needs to do to make that happen. The same is true for E, but what it takes to get there may be dramatically different.
Lately, though, I feel like 98% of my body weight is on the foot that touches the NT side of things, and that I just barely have a toe touching the ground on the ASD side. Is that ok? What else does A need that I'm not doing? Am I acting as if I'm ashamed, or want to keep the ASD a secret? Maybe.
Both boys are playing absolutely-100% NT T-ball, for example. There are plenty of local special-needs sports options, like the Miracle League, etc. A parent of one of Andrew's social skills group buddies is really into that league, and pushes it on me every chance she gets. And I'm nice, I listen, when I really just want to tell her to shut up and drop it.
A is in a totally mainstream 1st grade class too. Few people at the school even know what the official diagnosis is...we're just playing along as NT, hoping secretly that he can slide by that way. He's the "quirky kid" right? The "unusual but very smart and endearing" kid, at least for now.
And E is Mr. Social, talks to everyone and wants to do everything, go everywhere. So, we try to.....try to pass ourselves off as the typical family, doing typical-kid things like T-ball, birthday parties, etc. I'm leaning, leaning, leaning onto that NT foot, feeling like the ASD foot is barely touching the ground sometimes.
If I look deeply, I think I see that the truth is this: I want to be only in that NT world. I really believe that I've accepted the truth of A's diagnosis, he IS on the autism spectrum and that's not going to change. But in daily life, I stay in the NT world and don't embrace my position as an ASD mom. I don't really socialize with local "autism people", don't do the special needs sports, don't send my son to an ASD summer camp, etc. He's going to church camp instead. Isn't this a form of denial?
A cyber-friend who lives near here asked me if we're doing this weekend's Walk for Autism. I was embarrassed to admit that I hadn't even known it was this weekend; that's how out of touch with the local ASD "scene" I am. And then I'm faced with a dilemma......Walk for Autism, or T ball game? I chose T ball game. They're at basically the same time, and we couldn't do both. And, to compound things, A really has no awareness of the ASD, at least that I know of. He's never asked THE question about how he's different from the other kids at school, and doesn't know what autism is. Last year, we did a March for Babies for the March of Dimes. Both boys knew what it was for and why it was important for us to walk and raise money. How would I explain this? I'm not ready, don't know what I'd say and don't really think I want to have to say anything. Can you say denial again?
I'm thankful to have a great group of online friends who are ASD moms, and I feel comfortable talking to them about autism "stuff".....but that's really the only place that I exist in the ASD world. I've got at least one toe firmly on the ground of Autism Island with my friends there, but that's the only place. I just can't stop arguing with myself, though.........
*He doesn't need special sports leagues? Or does he?
*He's doing ok in school, socially, right? Or am I just blissfully unaware?
*How long can I keep putting him into typical-kid situations without even really telling anyone that we're fakers?
Tuesday, March 25, 2008
Baby, I'm amazed
Andrew is just so smart sometimes that it's scary. But it's not just "smart" in the traditional sense, even though he is..........it's the things he notices, things he remembers and thinks of, even days/weeks/years after the fact. He still manages to surprise me, though, even after all this time.
For several months now, he's been in a phase of posting signs all over the house, for various reasons. Some have been politically oriented (he's a Hillary fan, sadly), or lists of favorite things (foods, colors), or holiday greetings (we've still got Happy Easter in the living room, and I took down Merry Christmas not too long ago).
But a couple of weeks ago, he came home from school one day obsessed with the idea of making our own, in-home, art museum. I didn't really understand what he meant or envisioned---then he got out the sign-making paper. Next thing I know, I saw this:
...which was hanging on the hallway wall near his room.
The home art museum was to have a Masterpiece Exhibit (gotta love his 1st grade spelling!), a Sculpture Exhibit and a Pointillism Exhibit (he spells it "pointalisam"). Later that night, he made "sculptures" out of playdoh, and he and I drew some fair examples of pointillism. The masterpiece exhibits are TBA at this point. I asked him where he'd learned about this stuff, especially pointillism......was it in art class at school? (he goes to an arts-infused school, so it's not out of the realm of possibility) But he said he'd learned those words on the Jump Start Artist CD-rom computer game that we gave him. How many 6 year olds do you think are talking about pointillism and explaining what it is to their mom? (his version: it's a picture made out of tiny, tiny dots. Pretty good explanation, huh?) But these huge words and "out there" concepts just seem to soak into him........he retains them and then they pop back out when you least expect it. If you ask him who he sat with at lunch today, however, you'll probably hear "I don't know". That's what is so freakin' frustrating about the autism spectrum. Well, it's ONE of the frustrating things.
For several months now, he's been in a phase of posting signs all over the house, for various reasons. Some have been politically oriented (he's a Hillary fan, sadly), or lists of favorite things (foods, colors), or holiday greetings (we've still got Happy Easter in the living room, and I took down Merry Christmas not too long ago).
But a couple of weeks ago, he came home from school one day obsessed with the idea of making our own, in-home, art museum. I didn't really understand what he meant or envisioned---then he got out the sign-making paper. Next thing I know, I saw this:
...which was hanging on the hallway wall near his room.
The home art museum was to have a Masterpiece Exhibit (gotta love his 1st grade spelling!), a Sculpture Exhibit and a Pointillism Exhibit (he spells it "pointalisam"). Later that night, he made "sculptures" out of playdoh, and he and I drew some fair examples of pointillism. The masterpiece exhibits are TBA at this point. I asked him where he'd learned about this stuff, especially pointillism......was it in art class at school? (he goes to an arts-infused school, so it's not out of the realm of possibility) But he said he'd learned those words on the Jump Start Artist CD-rom computer game that we gave him. How many 6 year olds do you think are talking about pointillism and explaining what it is to their mom? (his version: it's a picture made out of tiny, tiny dots. Pretty good explanation, huh?) But these huge words and "out there" concepts just seem to soak into him........he retains them and then they pop back out when you least expect it. If you ask him who he sat with at lunch today, however, you'll probably hear "I don't know". That's what is so freakin' frustrating about the autism spectrum. Well, it's ONE of the frustrating things.
Monday, February 25, 2008
Where do we fit in?
You hear so much in the news nowadays about autism. Celebrities are speaking out, charities being formed and raising money, books being written.........the awareness of "autism" is much more prevalent than even just a few years ago. But along with that, comes a much higher incidence rate of autism itself, and of the so-called "autism spectrum disorders" (ASD). Recently, the "1 in 150" statistic has been highly publicized, and it occurs even MORE frequently in boys, for some reason.
But even with the deluge of publicity on the topic, it's taken me quite a while to accept the fact that my son is on the spectrum. But he is. Or is he? Just about every day, I struggle with this. First, his tentative diagnosis was PDD-NOS, which is like a pile of leftovers for the kids who don't officially meet the criteria for "classic autism" or other recognized ASD. As I understood it, PDD-NOS is for those kids who have some developmental issues and autistic symptoms or "tendencies", and there's no real label to put on them, so they get "pervasive developmental disorder-not otherwise specified". How's that for a mouthful?
But, Andrew was a preemie too, a 29-weeker. And most preemies have developmental delays, specifically in the areas of motor skills and/or speech. And true to form, Andrew was delayed, both in learning to walk and in the development of his language. He said a word or two, then stopped, and said no more for a while. He didn't acquire baby's favorite word, "no", until he was 2 1/2.
So when we started the diagnosis process, evaluators said "he sure looks a lot like Asperger's Syndrome" but the strict definition of Asperger's says that a child must NOT have had a speech delay. And as time has progressed, I've thought back to those comments and come to the almost-conclusion that Asperger's is a more accurate description of Andrew. But in some ways, even Asperger's doesn't quite fit.
Andrew is smart, very smart. Academically, he does very well at school and reads above grade level. He's made such tremendous progress over the last 2-3 years, and the progress even extends into the social realm, where ASD kids typically have the most trouble. He can play with other kids, speaks to them, looks at them, enjoys their company. He's even started to say some typical-6-year-old things, like "this is boring" or "I'm tired of this", and occasionally has a bit of an "attitude", all of which are typical of non-ASD kids his age, right?
I have wonderful cyber-friends in the ASD world, and I owe so much to those ladies for their support and encouragement. But since every child with ASD is so different, I still sometimes feel like we don't really belong anywhere. I want and need to have a community of people to belong to, and to understand what we deal with and what my parenting situation is like.......I'm just not sure how to find it. I never want to make any other parent feel bad, if her child might be struggling more than mine or has more disabilities, etc. But it's just hard, feeling like we are neither off nor on the spectrum.............and since you can't pick and choose the characteristics that apply, we're left floating out there, knowing that Andrew still has difficulties to work on, but not always knowing how to go about it. There's definitely no road map.
But even with the deluge of publicity on the topic, it's taken me quite a while to accept the fact that my son is on the spectrum. But he is. Or is he? Just about every day, I struggle with this. First, his tentative diagnosis was PDD-NOS, which is like a pile of leftovers for the kids who don't officially meet the criteria for "classic autism" or other recognized ASD. As I understood it, PDD-NOS is for those kids who have some developmental issues and autistic symptoms or "tendencies", and there's no real label to put on them, so they get "pervasive developmental disorder-not otherwise specified". How's that for a mouthful?
But, Andrew was a preemie too, a 29-weeker. And most preemies have developmental delays, specifically in the areas of motor skills and/or speech. And true to form, Andrew was delayed, both in learning to walk and in the development of his language. He said a word or two, then stopped, and said no more for a while. He didn't acquire baby's favorite word, "no", until he was 2 1/2.
So when we started the diagnosis process, evaluators said "he sure looks a lot like Asperger's Syndrome" but the strict definition of Asperger's says that a child must NOT have had a speech delay. And as time has progressed, I've thought back to those comments and come to the almost-conclusion that Asperger's is a more accurate description of Andrew. But in some ways, even Asperger's doesn't quite fit.
Andrew is smart, very smart. Academically, he does very well at school and reads above grade level. He's made such tremendous progress over the last 2-3 years, and the progress even extends into the social realm, where ASD kids typically have the most trouble. He can play with other kids, speaks to them, looks at them, enjoys their company. He's even started to say some typical-6-year-old things, like "this is boring" or "I'm tired of this", and occasionally has a bit of an "attitude", all of which are typical of non-ASD kids his age, right?
I have wonderful cyber-friends in the ASD world, and I owe so much to those ladies for their support and encouragement. But since every child with ASD is so different, I still sometimes feel like we don't really belong anywhere. I want and need to have a community of people to belong to, and to understand what we deal with and what my parenting situation is like.......I'm just not sure how to find it. I never want to make any other parent feel bad, if her child might be struggling more than mine or has more disabilities, etc. But it's just hard, feeling like we are neither off nor on the spectrum.............and since you can't pick and choose the characteristics that apply, we're left floating out there, knowing that Andrew still has difficulties to work on, but not always knowing how to go about it. There's definitely no road map.
Subscribe to:
Posts (Atom)