I tell you, if this is what getting older is like, you can have it because I don't want any.
In the last month, I've had a long time friend diagnosed with breast cancer and subsequently have a mastectomy, another long time friend die suddenly of a heart attack at age 45, and today I learned that a wonderful friend and fellow preeclampsia survivor has lost her second baby, who was stillborn after suffering multiple heart defects.
It just seems like everywhere I look these days I see examples of how hard, unfair and even brutal life can be. It's not like this just occurred, and the world suddenly became a difficult place full of struggling, pain and loss. I know it's always been that way, and always will be, but I guess it's just hitting close to home right now.
I have wonderful networks of friends online, in both the autism and preeclampsia communities, and we all carry burdens each day. We like to share the weight of them by leaning on others, telling our stories, complaining, venting etc, but sometimes it seems like there's just so much weight to carry that even when we share we can't lift it. Moms of precious kids on the spectrum who hurt themselves and others, don't speak, are still in diapers, and the valiant families behind them who work hard every day to give them good lives and happiness. Ladies who can't conceive, or who did so but have lost a baby due to miscarriage or through stillbirth. Moms of preemies, who delivered babies far before their time and suffer through weeks or months of hospitalization and lifelong delays or disabilities. And on top of that, illnesses and deaths in my own circle of local friends.......sometimes I think this is just too hard.
Now I know what people mean when they talk about feeling like a hamster on that stupid wheel that they like to play on. You just keep running, keep trying, but never really get anywhere. You get up in the morning, get on the wheel, and valiantly begin. Work hard all day, only to feel like you're in the exact same place by nighttime (maybe even a bit further behind, if you're tired). Sleep a bit, get up and start it all over again. Is that why they call it a rat race?
I don't want it to be that way. I don't want to have my eyes fixed on the wheel and only the wheel........I want to notice what's around me, and allow myself to enjoy the little things that DO remind you that it's worth it, this thing called life. The way little E laughs, A's hugs and how he tells me he loves me so much that he can't even carry all of his love, smiles on the faces of students when they perform well and succeed. But those things are crowded out lately, by the losses and the pain and the struggle. I'm not so sure about that saying "that which does not kill us makes us stronger." That's looking like a pile of BS right now.
Wednesday, October 1, 2008
Monday, September 29, 2008
hello from Red State USA
Well, we're now down to just 34 days until the election. I can't believe it, this process seems like it's been going on forever! The first big debate was last Friday, and I was proud of the job Obama did in holding his own, looking distinguished, calm, and presidential. He sure didn't smirk, sneer, laugh or be sarcastic towards his opponent, unlike someone else I could name.........
On Saturday, I took A to a birthday party for a classmate. His school is small, and by now we pretty much know everyone in the 2nd grade (only about 75 kids total). Several of the same kids have been to a few parties recently, so I've chatted with their Moms. 2 Moms were at the last party as well as this one, and we talk "small talk" about the kids, the school (LOVE IT!), our families, etc. This time, though, "Mom 1" asked if we'd watched the debate. Both of us ("Mom 2" and me) said we had, although admitted it hesitantly. Mom 1 asks if we want to discuss it, and Mom 2 says that maybe she should say up front who we support before going down this road.
Mom 1 = McCain. Mom 2 = Obama. I jumped onboard once I knew I wouldn't be alone in defending O. I just didn't want to fight that battle and be outnumbered. After that, it was awkward but ok. We were all nice, civil, etc, but expressed ourselves. Mom 1 tells us "I just don't like the wife" which meant Michelle Obama. We asked why, she said "she seems like a Black Panther to me". WTF? We countered by saying how much Sarah P worries us, that she's so close to being president but is so unqualified, etc.
It just brings to my mind thoughts about how reluctant we Democrats have to be around here to admit who and what we are and what we believe. Thankfully, there are a few other Obama bumper stickers here in the parking lot of my school, but it's not like that community-wide or state-wide. SC is extremely Red, practically burgundy or maroon, even though it seems to be against the self-interest of a lot of our citizens for them to vote that way. I just got up the nerve about a month ago to put that Obama sticker on my car, and it' s not because I don't support him or fully believe in him, etc. It's that I just didn't want to "go there" by inviting snide remarks, arguments, or even attempts to run me off the road! It's never happened, but I wouldn't be surprised if it did. Good old SC is just chock full of people who think Obama is either: 1--the antichrist 2--a muslim or 3--both. And they won't listen to you tell them otherwise.
Ok, time to pray: Lord, help us as American citizens as we approach this important election. Help us to look and listen with open minds to what the candidates have to say, and to make informed and faithful choices based on that, NOT based on bigotry, ignorance, fear and a reluctance to fight the status quo. Please allow the man who is best suited for the job to win, and to bring a return of peace, safety and prosperity to our country. Amen.
On Saturday, I took A to a birthday party for a classmate. His school is small, and by now we pretty much know everyone in the 2nd grade (only about 75 kids total). Several of the same kids have been to a few parties recently, so I've chatted with their Moms. 2 Moms were at the last party as well as this one, and we talk "small talk" about the kids, the school (LOVE IT!), our families, etc. This time, though, "Mom 1" asked if we'd watched the debate. Both of us ("Mom 2" and me) said we had, although admitted it hesitantly. Mom 1 asks if we want to discuss it, and Mom 2 says that maybe she should say up front who we support before going down this road.
Mom 1 = McCain. Mom 2 = Obama. I jumped onboard once I knew I wouldn't be alone in defending O. I just didn't want to fight that battle and be outnumbered. After that, it was awkward but ok. We were all nice, civil, etc, but expressed ourselves. Mom 1 tells us "I just don't like the wife" which meant Michelle Obama. We asked why, she said "she seems like a Black Panther to me". WTF? We countered by saying how much Sarah P worries us, that she's so close to being president but is so unqualified, etc.
It just brings to my mind thoughts about how reluctant we Democrats have to be around here to admit who and what we are and what we believe. Thankfully, there are a few other Obama bumper stickers here in the parking lot of my school, but it's not like that community-wide or state-wide. SC is extremely Red, practically burgundy or maroon, even though it seems to be against the self-interest of a lot of our citizens for them to vote that way. I just got up the nerve about a month ago to put that Obama sticker on my car, and it' s not because I don't support him or fully believe in him, etc. It's that I just didn't want to "go there" by inviting snide remarks, arguments, or even attempts to run me off the road! It's never happened, but I wouldn't be surprised if it did. Good old SC is just chock full of people who think Obama is either: 1--the antichrist 2--a muslim or 3--both. And they won't listen to you tell them otherwise.
Ok, time to pray: Lord, help us as American citizens as we approach this important election. Help us to look and listen with open minds to what the candidates have to say, and to make informed and faithful choices based on that, NOT based on bigotry, ignorance, fear and a reluctance to fight the status quo. Please allow the man who is best suited for the job to win, and to bring a return of peace, safety and prosperity to our country. Amen.
Sunday, September 7, 2008
ups and downs, mostly downs
So, what have we been up to, you ask? Near-miss from Tropical Storm Hanna (or Tropicalanna as my A calls it), extra day off from school because of it, being "tourists in our own town" all weekend (because we can, LOL) and then there's me......vacillating between anger, sorrow, frustration and a desire to just give it all up and walk away. :(
E has finally been started on meds for the ADHD. I say "finally" because somewhere inside, I knew we'd eventually reach this point. Sooner or later, and it was sooner. I don't relish this fact, nor do I want to brag about it, but here we are. Started Wednesday on Tenex, which is not a stimulant and is supposed to help with calming and with reducing aggression, etc. The couple of weeks leading up to last Wednesday were nightmarish in terms of his behavior........preschool calling me several times, just to tell me how bad he was being and to describe his horrid exploits in detail (while I'm supposed to be teaching). When the doc at the ADHD clinic heard all this, she immediately suggested trying the meds now, since not much else we're doing seems to be working.
First couple of days on the meds seemed like miracles to me. I was calmer and more at peace with daily living than I can remember being in a long time. Last few days, not so much. It's making him too tired during the day, and when he's not overly tired he seems nearly as hyper and out of control as before. *sigh* Here we go on that roller coaster I've heard so much about, of adjusting dosages, trying new med after new med, etc. :(
And then there's A, and what happened at church this morning. Anyone who knows him knows that he's a hugger, no question. Hugs everyone, adults to kids, and it means nothing more than that he's excited to see you or to share something exciting with you. Nothing else, ever. I say all this because.....
We have told very few people at church about the Asperger's diagnosis, or being on the spectrum at all, really. It either hasn't come up or just wasn't necessary. Kind of nice, really, to just "pass" with the typical kids and not have to walk around with the scarlet A on his chest (and that A is not for his name, if you know what I mean). During the church services, A sits with various families out in the congregation, because K and I are always sitting up front with the choir. He's done this for several years and is totally fine with it. He's got his favorite families that he gravitates to, and they are (*or so I thought) fine with having A join them for an hour a week.
But today, after service, a man that I already dislike comes up to talk to me. He's a part of one of the families A sits with, and he sat there today. Rather than name this man, let's just call him Baldy. Baldy tells me "I know A's always been a close-space kind of guy, but today he was just getting a little TOO close with the girls, hugging them too tight, not letting go, etc. And ____________(another Dad who sat nearby) was really getting upset at the way A was hugging his daughter, so I tried to talk to A and tell him you need to back up, give the girls some space etc. But he didn't listen to me, so I thought I needed to let you know".
In shock, I said something like "ok, got it" and he moved on. But as minutes went by and I could think, I got more and more and more and more pissed off about this. These stupid, rich, bigoted, lily-white Republican men (and I mean that in the worst possible way) know NOTHING about my child and our reality with him. NOTHING. And to think that the dad of a 7 year old somehow thinks MY 7 year old is doing something inappropriate or even "sexual" by being in his daughter's personal space or hugging her too much/too firmly, is preposterous and insulting. Not to mention chicken-shit, considering that he wouldn't come and talk to us himself or ask questions to potentially learn more about A and why he might do this......oh no, we can't do that. Just send a lackey to come complain to me and talk in a patronizing way, dripping with sweetness and yet dripping with condescension at the same time. Basically saying "I know you guys don't teach this stuff to your kids, but do you mind helping us keep your little pervert's hands off of the angelic girls of this church?"
So I spent the rest of the day stewing over this. Stewing over how to explain this to Andrew in a way that's concrete enough for him to understand, remember and execute. Much easier said than done, for sure. And, stewing over how to respond to these losers in our church who have a problem with how A behaves. Still haven't decided, but I'm leaning towards doing some educating, throwing the ASD stuff in their faces and pointing out that A has no earthly clue what anything sexual is and DOES NOT mean anything inappropriate by his actions. And if the losers can't accept that, A will just sit somewhere else with some more open minded people. But that begs the question.......how will I explain to him that he can't sit with Baldy and crew anymore? :( :( :( :( :(
E has finally been started on meds for the ADHD. I say "finally" because somewhere inside, I knew we'd eventually reach this point. Sooner or later, and it was sooner. I don't relish this fact, nor do I want to brag about it, but here we are. Started Wednesday on Tenex, which is not a stimulant and is supposed to help with calming and with reducing aggression, etc. The couple of weeks leading up to last Wednesday were nightmarish in terms of his behavior........preschool calling me several times, just to tell me how bad he was being and to describe his horrid exploits in detail (while I'm supposed to be teaching). When the doc at the ADHD clinic heard all this, she immediately suggested trying the meds now, since not much else we're doing seems to be working.
First couple of days on the meds seemed like miracles to me. I was calmer and more at peace with daily living than I can remember being in a long time. Last few days, not so much. It's making him too tired during the day, and when he's not overly tired he seems nearly as hyper and out of control as before. *sigh* Here we go on that roller coaster I've heard so much about, of adjusting dosages, trying new med after new med, etc. :(
And then there's A, and what happened at church this morning. Anyone who knows him knows that he's a hugger, no question. Hugs everyone, adults to kids, and it means nothing more than that he's excited to see you or to share something exciting with you. Nothing else, ever. I say all this because.....
We have told very few people at church about the Asperger's diagnosis, or being on the spectrum at all, really. It either hasn't come up or just wasn't necessary. Kind of nice, really, to just "pass" with the typical kids and not have to walk around with the scarlet A on his chest (and that A is not for his name, if you know what I mean). During the church services, A sits with various families out in the congregation, because K and I are always sitting up front with the choir. He's done this for several years and is totally fine with it. He's got his favorite families that he gravitates to, and they are (*or so I thought) fine with having A join them for an hour a week.
But today, after service, a man that I already dislike comes up to talk to me. He's a part of one of the families A sits with, and he sat there today. Rather than name this man, let's just call him Baldy. Baldy tells me "I know A's always been a close-space kind of guy, but today he was just getting a little TOO close with the girls, hugging them too tight, not letting go, etc. And ____________(another Dad who sat nearby) was really getting upset at the way A was hugging his daughter, so I tried to talk to A and tell him you need to back up, give the girls some space etc. But he didn't listen to me, so I thought I needed to let you know".
In shock, I said something like "ok, got it" and he moved on. But as minutes went by and I could think, I got more and more and more and more pissed off about this. These stupid, rich, bigoted, lily-white Republican men (and I mean that in the worst possible way) know NOTHING about my child and our reality with him. NOTHING. And to think that the dad of a 7 year old somehow thinks MY 7 year old is doing something inappropriate or even "sexual" by being in his daughter's personal space or hugging her too much/too firmly, is preposterous and insulting. Not to mention chicken-shit, considering that he wouldn't come and talk to us himself or ask questions to potentially learn more about A and why he might do this......oh no, we can't do that. Just send a lackey to come complain to me and talk in a patronizing way, dripping with sweetness and yet dripping with condescension at the same time. Basically saying "I know you guys don't teach this stuff to your kids, but do you mind helping us keep your little pervert's hands off of the angelic girls of this church?"
So I spent the rest of the day stewing over this. Stewing over how to explain this to Andrew in a way that's concrete enough for him to understand, remember and execute. Much easier said than done, for sure. And, stewing over how to respond to these losers in our church who have a problem with how A behaves. Still haven't decided, but I'm leaning towards doing some educating, throwing the ASD stuff in their faces and pointing out that A has no earthly clue what anything sexual is and DOES NOT mean anything inappropriate by his actions. And if the losers can't accept that, A will just sit somewhere else with some more open minded people. But that begs the question.......how will I explain to him that he can't sit with Baldy and crew anymore? :( :( :( :( :(
Wednesday, August 20, 2008
Bat-asses
Yeah, that's what I said, wanna make somethin' of it?
Ok, actually, it was little E who said this tonight, right before bedtime. He's currently Batman/Superfriends crazy, asking to watch them every single day after school. The old Justice League cartoon, even the old old old 60s TV show with Adam West, etc. Cracks me up to see him getting so into this!
Anyway, now he's calling everything a Bat-something.....in the same vein as Batmobile, Batcopter, etc. One episode we saw recently had a Bat-arang (yep, a boomerang in the shape of that Batman symbol). So, tonight he's playing with this weird contraption that looks a little like glasses. He puts them over his eyes like glasses, then says "Mom, these are my Bat-asses".
trying not to laugh, trying not to laugh, trying not to laugh..........
"What, honey? Did you say glasses?" "No, I said Bat-asses. Asses are the same thing as glasses". "Um, no honey, I don't think they are". "Uh huh, Mom, these are my Bat-asses, they help me see better!"
Then he runs away toward A's room, shouting to tell him: "Hey, come look at my Bat-asses!" So, what happens when he says this at school tomorrow? I figured if I enlightened him about how this actually wasn't a very nice word, don't say it, etc, it would just make him want to say it that much more. Hope I was right! Raising a bright little 4 year old boy sure is fun............LOL!
Ok, actually, it was little E who said this tonight, right before bedtime. He's currently Batman/Superfriends crazy, asking to watch them every single day after school. The old Justice League cartoon, even the old old old 60s TV show with Adam West, etc. Cracks me up to see him getting so into this!
Anyway, now he's calling everything a Bat-something.....in the same vein as Batmobile, Batcopter, etc. One episode we saw recently had a Bat-arang (yep, a boomerang in the shape of that Batman symbol). So, tonight he's playing with this weird contraption that looks a little like glasses. He puts them over his eyes like glasses, then says "Mom, these are my Bat-asses".
trying not to laugh, trying not to laugh, trying not to laugh..........
"What, honey? Did you say glasses?" "No, I said Bat-asses. Asses are the same thing as glasses". "Um, no honey, I don't think they are". "Uh huh, Mom, these are my Bat-asses, they help me see better!"
Then he runs away toward A's room, shouting to tell him: "Hey, come look at my Bat-asses!" So, what happens when he says this at school tomorrow? I figured if I enlightened him about how this actually wasn't a very nice word, don't say it, etc, it would just make him want to say it that much more. Hope I was right! Raising a bright little 4 year old boy sure is fun............LOL!
Saturday, August 16, 2008
I need more arms, and more hours
Big A has really been enjoying that lovely summer TV staple, "American Gladiators". It's become an obsession of his, truth be told, although I really can't stand the damn thing. :( Anyway, there's an event on the show called Snapback. The contestant has a stretchy cord attached to a big harness around her waist. She tries to pull herself forward on all fours, almost like crawling, and the stretchy cord is held by the gladiator (who's obviously trying to keep her from getting anywhere).
The contestant pulls, strains, grasping for every centimeter she can move forward. As she gets ahead a bit, the name of the game comes into play, and she might Snapback if she loses tension on that stretchy cord. Often, you see a deadlock where the contestant just keeps on pulling, and so does the gladiator, and consequently neither one moves anywhere!
Bottom line, I need more arms. Oh, and a few more hours in the day would be nice too. School officially started for me last Wednesday, and DH and A start Monday (so E will too, going back to preschool). We've got a full life, and are so very blessed in so many ways, I realize this. But it's that freakin' Type A personality in me that can't stand for things not to be "right" or things to be left undone, etc. So when you factor in a new full time job (OMG, first time in 7 years), 2 crazy-active boys at 2 different schools, DH has basically 2 full time jobs, the house, the diabetic cat, both boys in therapies, I'm on 3 volunteer boards for various groups, church choir, community chorus.......I could get so much more done with another arm or two. Or three. Ok, four, tops.
And 24 hours is just not cutting it anymore. If I could eliminate the need for sleep, I'd be in great shape! I'm a night owl anyway, love to stay up and get work done, play online, blog , watch Michael Phelps try to win yet again, fold clothes, etc. But when the morning comes, GRRRRRRRR I hate to get up and I feel like crap. And then I say "I have GOT to stop staying up that late" but I never do. :( Everywhere I look in this house are things I need to do something with......file, clean, put away, fold, throw away, sort, give away, vacuum, reorganize, etc, but I never seem to be able to get to it all. And the Type A girl has a hard time seeing the value in just getting a little bit done--it's hard to say to myself "yeah, but I did get 2 pairs of pants hung into the closet, that's something......" Can I just burn the place down and start over?
So, anyone that knows how to distort time or make clocks stop, let me know, ok? Even like in the old Bewitched TV show, how she could just freeze a scene while she performed some magic or did something she didn't want anyone else to see.....that I could handle. Then, maybe I wouldn't feel so swamped, tired and depressed about all that I'm not getting done these days.
The contestant pulls, strains, grasping for every centimeter she can move forward. As she gets ahead a bit, the name of the game comes into play, and she might Snapback if she loses tension on that stretchy cord. Often, you see a deadlock where the contestant just keeps on pulling, and so does the gladiator, and consequently neither one moves anywhere!
Bottom line, I need more arms. Oh, and a few more hours in the day would be nice too. School officially started for me last Wednesday, and DH and A start Monday (so E will too, going back to preschool). We've got a full life, and are so very blessed in so many ways, I realize this. But it's that freakin' Type A personality in me that can't stand for things not to be "right" or things to be left undone, etc. So when you factor in a new full time job (OMG, first time in 7 years), 2 crazy-active boys at 2 different schools, DH has basically 2 full time jobs, the house, the diabetic cat, both boys in therapies, I'm on 3 volunteer boards for various groups, church choir, community chorus.......I could get so much more done with another arm or two. Or three. Ok, four, tops.
And 24 hours is just not cutting it anymore. If I could eliminate the need for sleep, I'd be in great shape! I'm a night owl anyway, love to stay up and get work done, play online, blog , watch Michael Phelps try to win yet again, fold clothes, etc. But when the morning comes, GRRRRRRRR I hate to get up and I feel like crap. And then I say "I have GOT to stop staying up that late" but I never do. :( Everywhere I look in this house are things I need to do something with......file, clean, put away, fold, throw away, sort, give away, vacuum, reorganize, etc, but I never seem to be able to get to it all. And the Type A girl has a hard time seeing the value in just getting a little bit done--it's hard to say to myself "yeah, but I did get 2 pairs of pants hung into the closet, that's something......" Can I just burn the place down and start over?
So, anyone that knows how to distort time or make clocks stop, let me know, ok? Even like in the old Bewitched TV show, how she could just freeze a scene while she performed some magic or did something she didn't want anyone else to see.....that I could handle. Then, maybe I wouldn't feel so swamped, tired and depressed about all that I'm not getting done these days.
Tuesday, August 5, 2008
I'm so tired
It's little E this time, not A. And I just feel so beaten down where he's concerned, behaviorally speaking.
Since K and I are teachers, obviously one of the few perks of that job is having the summer off. We're on the same schedule as the kids, and can be home with them for great family time for all of June and most of July (before the dreaded band camp).
E's preschool, however, has a policy that you've got to continue paying your tuition during the summer, whether your child attends school or not. It's to hold your spot in the program, since there's a long waiting list of people who would take it if you no longer wanted it. Sucks to pay $$$$ all summer when we're at home, but thank goodness this is the last summer we've got to do that.
Anyway, I know that E would not benefit from going for 6, 7 or 8 weeks straight without coming to school---he needs to keep up with his routine and the rituals and expectations of school, at least a little bit. But this summer has worked out in such a way that he's really come to school very very rarely. A few field trip days, a couple of "water play days", and that's about it.
Anyway, he went 2 days last week (1 full, 1 half), and then I'd intended to start this week in sending him all 5 days so that we'd get back into that routine before I start school next week (sob, sob). But yesterday morning, I just plain didn't feel like sending him. No offense to the school at all, you understand. I just thought of it being maybe the last real day of summer for us to stay home together, veg out in our pjs and watch videos, play board games, etc. So I asked him which he'd rather do, and of course he wanted to stay home. He's a "homebody", strange as that sounds.
So I let him stay home. Shoot me, but I wanted to stay home with my children while I can. I wanted one more day of no schedule, no rushing about, etc. Today, however, it bit me where the sun don't shine...........
I took him for the full day today, and they had a bowling alley trip this morning. We'd witnessed last week that if a child badly misbehaves on a trip, then they aren't allowed to go on the next one. I reminded him of this, told him to try really hard to be good and listen on this trip because he wouldn't want to miss a future trip like those other boys did. Got there at 3:30 to pick him up, greeted by the afternoon aide telling me that the morning teacher had left us a note. That's never good.
The note was on red paper. Again, not good. A sad face :( on one side, and the bad news on the other: he'd not been listening on the trip, didn't follow "any of the rules". Therefore, next week he will not be allowed to attend the weekly bowling trip. I read the note, then the afternoon aide says something like, "he really had a rough time today, I think it must be because he's not here all the time, not used to it" or something along those lines.
I'm not really faulting the teachers for their decision, and I'm going to support it (not argue, complain, etc). I'm just mad at myself, I guess, for the fact that doing what I wanted to with them this summer seems to NOT be ok in some cosmic way that I don't understand and don't like. I stayed home during the summers as a child, so did my sister. So did K and his 2 brothers, and just about everyone I know. But my child? Apparently not. And this may seem like just a little thing to whine about in the scheme of things, but I just do not think I can take another afternoon of arriving at the school to see that look on the teachers' faces, knowing I'm about to be hit with yet another bad report. Why does it have to be my child that has to stay in a constant routine of school to be successful? Why is this so freakin complicated?
Since K and I are teachers, obviously one of the few perks of that job is having the summer off. We're on the same schedule as the kids, and can be home with them for great family time for all of June and most of July (before the dreaded band camp).
E's preschool, however, has a policy that you've got to continue paying your tuition during the summer, whether your child attends school or not. It's to hold your spot in the program, since there's a long waiting list of people who would take it if you no longer wanted it. Sucks to pay $$$$ all summer when we're at home, but thank goodness this is the last summer we've got to do that.
Anyway, I know that E would not benefit from going for 6, 7 or 8 weeks straight without coming to school---he needs to keep up with his routine and the rituals and expectations of school, at least a little bit. But this summer has worked out in such a way that he's really come to school very very rarely. A few field trip days, a couple of "water play days", and that's about it.
Anyway, he went 2 days last week (1 full, 1 half), and then I'd intended to start this week in sending him all 5 days so that we'd get back into that routine before I start school next week (sob, sob). But yesterday morning, I just plain didn't feel like sending him. No offense to the school at all, you understand. I just thought of it being maybe the last real day of summer for us to stay home together, veg out in our pjs and watch videos, play board games, etc. So I asked him which he'd rather do, and of course he wanted to stay home. He's a "homebody", strange as that sounds.
So I let him stay home. Shoot me, but I wanted to stay home with my children while I can. I wanted one more day of no schedule, no rushing about, etc. Today, however, it bit me where the sun don't shine...........
I took him for the full day today, and they had a bowling alley trip this morning. We'd witnessed last week that if a child badly misbehaves on a trip, then they aren't allowed to go on the next one. I reminded him of this, told him to try really hard to be good and listen on this trip because he wouldn't want to miss a future trip like those other boys did. Got there at 3:30 to pick him up, greeted by the afternoon aide telling me that the morning teacher had left us a note. That's never good.
The note was on red paper. Again, not good. A sad face :( on one side, and the bad news on the other: he'd not been listening on the trip, didn't follow "any of the rules". Therefore, next week he will not be allowed to attend the weekly bowling trip. I read the note, then the afternoon aide says something like, "he really had a rough time today, I think it must be because he's not here all the time, not used to it" or something along those lines.
I'm not really faulting the teachers for their decision, and I'm going to support it (not argue, complain, etc). I'm just mad at myself, I guess, for the fact that doing what I wanted to with them this summer seems to NOT be ok in some cosmic way that I don't understand and don't like. I stayed home during the summers as a child, so did my sister. So did K and his 2 brothers, and just about everyone I know. But my child? Apparently not. And this may seem like just a little thing to whine about in the scheme of things, but I just do not think I can take another afternoon of arriving at the school to see that look on the teachers' faces, knowing I'm about to be hit with yet another bad report. Why does it have to be my child that has to stay in a constant routine of school to be successful? Why is this so freakin complicated?
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."
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