I have a very short entry tonight...but one that I just had to post.
The following short (and dark and pretty much unrecognizable) video is my son, reading his first sentences. He is 7 1/2 years old, and has autism which has severely affected his ability to understand and communicate. But in this moment, he is glorious and amazing.
The sentences you'll hear him read are from "books" he can now read on his own:
A Fish and a Ball: I see a fish and a yellow ball.
A Horse and a Boy: I see a yellow horse and a boy.
A Car and a Boy: I see a yellow...(the camera battery died.)
Now, "fish" is "bish," and "yellow" is "yo-yo" - but he's doing it. He's reading. A little boy trying so hard, and doing such a miraculous thing...tonight, our hearts are full indeed.
"Although the constant shadow of certain death looms over every day, the pleasures and joys of life can be so fine and deeply affecting that the heart is nearly stilled by astonishment." ~D. Koontz
I've always loved that quote, and now...I understand.
Thursday, November 29, 2007
Wednesday, November 28, 2007
Eye on the TV
Tonight the three of us (minus Stephen, who was in his room playing) sat down to watch "A Charlie Brown Christmas" on ABC. I mean, sure we have it on DVD and VHS, but there's just something about watching it as it airs on network TV, you know?
Today has been another difficult day for me personally...I've been extremely down and on edge at the same time. I'm trying to figure out exactly what's going on, but that's for another day. So...there we sat, watching the opening scene: the kids skating on the pond, with Vince Guaraldi's magnificently simple jazz in the background...and I started crying. Not loud sobbing gasps, which I'm certainly known to do, but those quiet tears that slip out almost against your will. I cried for the little girl I used to be. I can see her in my mind's eye: long brown hair, usually in two ponytails on either side of her head, big buck teeth, and all the innocence of childhood in her eyes...sitting cross-legged on the floor in front of the big cabinet TV, watching Charlie Brown and feeling the excitement of Christmas growing in her heart. I cried for the teenager that I became: a bit more confident, surrounded by friends, full of exuberance and boundless hope for the future...watching Charlie Brown at Christmastime, remembering the magic of childhood. Now...that doesn't sound too festive and cheery, but I think it's necessary, at least for me, to remember those phases of my life, and pay homage to what was overall not a bad growing-up time.
So with my tears still drying on my cheeks, I wait for the local station's interstitials to end so we can finish watching Charlie and Co....there's a teaser about the forthcoming weather report, a commercial for a local car lot, and then...a promo for the nightly local news. The grey haired-and-moustached anchor man literally BLURTS: "Coming up at ten, an update on that dog that was skinned alive." And then immediately the last segment of the Christmas special rolls.
David and I exchange horrified looks. Kerry, our nine year old, has a bit of a puzzled look. THIS is what the news promo is? They tuck that admittedly horrible but overtly sensational tag line in between segments of a family Christmas show? Is nothing sacred?
And the answer to that is sadly no. The world squashes down the beautiful, the precious, the SACRED, and celebrates the ugly, tragic, and horrifying. It's truly frightening...and it makes me angry.
I live in a world that seems to me to be starving for what is GOOD, and honest, and noble...there's a reason that people save a part of their hearts for Charlie Brown, or the corny old Andy Griffith show re-runs on TVLand. But we don't celebrate that...we tuck it away in a secret place, and go on ignoring each other, asking "How are you?" and not meaning it, and not being willing to get our hands dirty making a difference in someone's life.
Instead...we stare when we pass an accident on the side of the road. We watch movies about horrible, disgusting, GORY things to somehow make us feel more alive - I guess because we're not being eviscerated like those poor stooges in the movie?
See if this rings a bell:
Eye on the TV
Cause tragedy thrills me
Whatever flavor
It happens to be
Cause I need to watch things die
From a distance
Vicariously, I
Live while the whole world dies
You all need it too - don't lie. (from "Vicarious" - Tool)
That's the thing, isn't it? It's not so very bad if it's happening to someone else. It might even be a bit thrilling - way down inside, where you wouldn't admit it. You find yourself secretly glad that it's not YOU. Wait till it (whatever "it" is: cancer, a lost job, a betrayal) comes knocking on your door, and then it hits home, and suddenly it's a whole new ballgame.
Still...there's a part of me that won't give up, even with so much evidence pointing to the ultimate, inevitable demise of our species. I took a "mental health day" yesterday - isn't that just the cutest name EVER? - and spent a good ten minutes sitting on my couch, drinking a cup of coffee while I watched the dark, rainy, chilly day outside. The tree outside our deck is turning orangey-red and gold, and I marveled at the way the gray light emphasized the impact of the colors. And I was overcome by that ever-elusive feeling of genuine peace, of harmony and...rightness. Is that a word? Well, anyway...it was fleeting, but it was real.
How do I counterbalance that with the society of which I find myself a part? A society where men call in to local sports talk radio vehemently defending their football teams of choice, with passion and fire in their voices...where's the passion for fighting for things that MATTER? A society where children (yes, mine included) play video games and surf websites instead of, you know...PLAY...the way I did a relatively short time ago. A society where people are so desensitized to horror that a programming director slips in a tabloid-esque "dog skinned alive" headline into the break of a kids' Christmas special.
This holiday season I hope that you take the time to remember what matters...be it the Christmas story complete with Wise Men and shepherds, spending time talking...really talking...to your family or friends, or just remembering what it was like to be a kid. I'm going to do my best to have something of a Yuletide that encompasses all three, and then some.
"It really isn't such a bad little tree...maybe all it needs is a little love." ~Linus Van Pelt
Today has been another difficult day for me personally...I've been extremely down and on edge at the same time. I'm trying to figure out exactly what's going on, but that's for another day. So...there we sat, watching the opening scene: the kids skating on the pond, with Vince Guaraldi's magnificently simple jazz in the background...and I started crying. Not loud sobbing gasps, which I'm certainly known to do, but those quiet tears that slip out almost against your will. I cried for the little girl I used to be. I can see her in my mind's eye: long brown hair, usually in two ponytails on either side of her head, big buck teeth, and all the innocence of childhood in her eyes...sitting cross-legged on the floor in front of the big cabinet TV, watching Charlie Brown and feeling the excitement of Christmas growing in her heart. I cried for the teenager that I became: a bit more confident, surrounded by friends, full of exuberance and boundless hope for the future...watching Charlie Brown at Christmastime, remembering the magic of childhood. Now...that doesn't sound too festive and cheery, but I think it's necessary, at least for me, to remember those phases of my life, and pay homage to what was overall not a bad growing-up time.
So with my tears still drying on my cheeks, I wait for the local station's interstitials to end so we can finish watching Charlie and Co....there's a teaser about the forthcoming weather report, a commercial for a local car lot, and then...a promo for the nightly local news. The grey haired-and-moustached anchor man literally BLURTS: "Coming up at ten, an update on that dog that was skinned alive." And then immediately the last segment of the Christmas special rolls.
David and I exchange horrified looks. Kerry, our nine year old, has a bit of a puzzled look. THIS is what the news promo is? They tuck that admittedly horrible but overtly sensational tag line in between segments of a family Christmas show? Is nothing sacred?
And the answer to that is sadly no. The world squashes down the beautiful, the precious, the SACRED, and celebrates the ugly, tragic, and horrifying. It's truly frightening...and it makes me angry.
I live in a world that seems to me to be starving for what is GOOD, and honest, and noble...there's a reason that people save a part of their hearts for Charlie Brown, or the corny old Andy Griffith show re-runs on TVLand. But we don't celebrate that...we tuck it away in a secret place, and go on ignoring each other, asking "How are you?" and not meaning it, and not being willing to get our hands dirty making a difference in someone's life.
Instead...we stare when we pass an accident on the side of the road. We watch movies about horrible, disgusting, GORY things to somehow make us feel more alive - I guess because we're not being eviscerated like those poor stooges in the movie?
See if this rings a bell:
Eye on the TV
Cause tragedy thrills me
Whatever flavor
It happens to be
Cause I need to watch things die
From a distance
Vicariously, I
Live while the whole world dies
You all need it too - don't lie. (from "Vicarious" - Tool)
That's the thing, isn't it? It's not so very bad if it's happening to someone else. It might even be a bit thrilling - way down inside, where you wouldn't admit it. You find yourself secretly glad that it's not YOU. Wait till it (whatever "it" is: cancer, a lost job, a betrayal) comes knocking on your door, and then it hits home, and suddenly it's a whole new ballgame.
Still...there's a part of me that won't give up, even with so much evidence pointing to the ultimate, inevitable demise of our species. I took a "mental health day" yesterday - isn't that just the cutest name EVER? - and spent a good ten minutes sitting on my couch, drinking a cup of coffee while I watched the dark, rainy, chilly day outside. The tree outside our deck is turning orangey-red and gold, and I marveled at the way the gray light emphasized the impact of the colors. And I was overcome by that ever-elusive feeling of genuine peace, of harmony and...rightness. Is that a word? Well, anyway...it was fleeting, but it was real.
How do I counterbalance that with the society of which I find myself a part? A society where men call in to local sports talk radio vehemently defending their football teams of choice, with passion and fire in their voices...where's the passion for fighting for things that MATTER? A society where children (yes, mine included) play video games and surf websites instead of, you know...PLAY...the way I did a relatively short time ago. A society where people are so desensitized to horror that a programming director slips in a tabloid-esque "dog skinned alive" headline into the break of a kids' Christmas special.
This holiday season I hope that you take the time to remember what matters...be it the Christmas story complete with Wise Men and shepherds, spending time talking...really talking...to your family or friends, or just remembering what it was like to be a kid. I'm going to do my best to have something of a Yuletide that encompasses all three, and then some.
"It really isn't such a bad little tree...maybe all it needs is a little love." ~Linus Van Pelt
Wednesday, November 21, 2007
'Tis the season...
It's that magical time of year again. The days between Thanksgiving and Christmas used to be my absolute favorite. Most of my cherished childhood memories center around family and the winter holiday season.
Not anymore.
I felt kind of down today...blue and moody, and it took me a while to figure it out. Tomorrow I only have to work half a day, the next day is Thanksgiving, and then I don't go back to work till Monday. The kids are off now...
Ahhh...there we go. The kids are out of school till Monday. Stephen (okay, so calling him "S" got old)...out of routine, off schedule, off kilter...and it all makes sense now. No longer are holidays or breaks from school something I look forward to and anticipate. Now, I dread them in a great many ways. How will we manage him? How can I possibly explain to him that it's Thursday but he doesn't go to school? This sweet, innocent boy has no concept of holidays or what they mean.
And so it goes. Yet another one of those things I file under "Things that Suck about Autism." Holidays have become yet another source of stress...not the intended time to relax and enjoy family and friends that it's kind of supposed to be. Throw into the mix the fact that we ALWAYS go to my parents' house (because nobody else knows what the hell to DO with us) and that I'll more than likely spend half my time jumping up from the table to go adjust the TV or read to Stephen on demand...well, you can see that our Thanksgiving table is rather anti-Norman Rockwell. Sigh.
Stephen will probably eat a sumptuous feast of tater tots and chips. Ugh. His poor diet is only one of the things I worry about all the time. That in turn brings to mind some of the really WEIRD things about his autism. Like...when I'm driving him to school, I can't rest my left elbow on the driver's side door. Not allowed. He reaches forward and pushes on my shoulder till I put my arm down. And, he will only eat certain foods out of certain bowls...don't dare to put the chips into the cheese puff bowl. Stuff like that sounds funny, and I guess in a way it is...but mostly it's just bizarre and occasionally mentally trying.
As I was thinking about the things I wanted to address in this entry, I was reminded of a story that was given to me not long after Stephen was diagnosed. Maybe you've heard of the heartwarming story called "A Trip to Holland"? Here's a link for your reading pleasure - people less battlescarred and cynical than moi, make sure you have a hanky handy: http://www.angelfire.com/ky/touristinfo/holland.html
Obviously this story was written with excellent intentions. I shed a few tears over it myself, way back when. It's a charming little concept, when you think about it. Having a typical child - why, that's a trip to Italy. A charming, cultured, gorgeous place with spectacular food and wine. And, so we're told by the story, having a special needs child is like a trip to Holland when you were EXPECTING to go to Italy. Different, yes, but look around and enjoy Holland for what it has to offer!
Okay. I call foul here. I don't buy it, not anymore. I still want Italy! After more than five years of my exile in Holland, I want Italy! I don't find Holland cute or happy or ADEQUATE. The Rembrandts? They're cheap imitations. The tulips? Plastic. In short, I don't care for this place, and if I never saw another windmill or pink-cheeked lad, that would be fine with me.
And this part? "The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place." Oh, sure. Ever dealt with an autistic child with a stomach virus? How about diarrhea in a 7 year old kid wearing PullUps? Gotten a bloody nose from being headbutted by a kid who doesn't WANT to put on his coat, dammit?
I think I'll write a new anecdote..."A Trip to the Slums of Calcutta" - it won't be pretty but it'll be real. I guess the main point here is that the sunny, feel-good "Holland" story doesn't comfort me. It makes me feel guilty, and god knows I don't need THAT. If I'm supposed to somehow ENJOY Stephen's autism, then I'm out of luck. Because I don't. I hate it.
"But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland."
That's just it, isn't it? There's nothing very special and very lovely about this. My son is precious and adorable and lovable, but those qualities shine through in spite of the autism...not because of it.
As we make our way into the holiday season, I'd like to wish everyone who takes time out of their day to read my ramblings a happy Thanksgiving - I hope you have a peaceful and wonderful time with family and friends. And if you're making out your Christmas list and want to include Stephen...
Put him down for a first class ticket to Italy.
Not anymore.
I felt kind of down today...blue and moody, and it took me a while to figure it out. Tomorrow I only have to work half a day, the next day is Thanksgiving, and then I don't go back to work till Monday. The kids are off now...
Ahhh...there we go. The kids are out of school till Monday. Stephen (okay, so calling him "S" got old)...out of routine, off schedule, off kilter...and it all makes sense now. No longer are holidays or breaks from school something I look forward to and anticipate. Now, I dread them in a great many ways. How will we manage him? How can I possibly explain to him that it's Thursday but he doesn't go to school? This sweet, innocent boy has no concept of holidays or what they mean.
And so it goes. Yet another one of those things I file under "Things that Suck about Autism." Holidays have become yet another source of stress...not the intended time to relax and enjoy family and friends that it's kind of supposed to be. Throw into the mix the fact that we ALWAYS go to my parents' house (because nobody else knows what the hell to DO with us) and that I'll more than likely spend half my time jumping up from the table to go adjust the TV or read to Stephen on demand...well, you can see that our Thanksgiving table is rather anti-Norman Rockwell. Sigh.
Stephen will probably eat a sumptuous feast of tater tots and chips. Ugh. His poor diet is only one of the things I worry about all the time. That in turn brings to mind some of the really WEIRD things about his autism. Like...when I'm driving him to school, I can't rest my left elbow on the driver's side door. Not allowed. He reaches forward and pushes on my shoulder till I put my arm down. And, he will only eat certain foods out of certain bowls...don't dare to put the chips into the cheese puff bowl. Stuff like that sounds funny, and I guess in a way it is...but mostly it's just bizarre and occasionally mentally trying.
As I was thinking about the things I wanted to address in this entry, I was reminded of a story that was given to me not long after Stephen was diagnosed. Maybe you've heard of the heartwarming story called "A Trip to Holland"? Here's a link for your reading pleasure - people less battlescarred and cynical than moi, make sure you have a hanky handy: http://www.angelfire.com/ky/touristinfo/holland.html
Obviously this story was written with excellent intentions. I shed a few tears over it myself, way back when. It's a charming little concept, when you think about it. Having a typical child - why, that's a trip to Italy. A charming, cultured, gorgeous place with spectacular food and wine. And, so we're told by the story, having a special needs child is like a trip to Holland when you were EXPECTING to go to Italy. Different, yes, but look around and enjoy Holland for what it has to offer!
Okay. I call foul here. I don't buy it, not anymore. I still want Italy! After more than five years of my exile in Holland, I want Italy! I don't find Holland cute or happy or ADEQUATE. The Rembrandts? They're cheap imitations. The tulips? Plastic. In short, I don't care for this place, and if I never saw another windmill or pink-cheeked lad, that would be fine with me.
And this part? "The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place." Oh, sure. Ever dealt with an autistic child with a stomach virus? How about diarrhea in a 7 year old kid wearing PullUps? Gotten a bloody nose from being headbutted by a kid who doesn't WANT to put on his coat, dammit?
I think I'll write a new anecdote..."A Trip to the Slums of Calcutta" - it won't be pretty but it'll be real. I guess the main point here is that the sunny, feel-good "Holland" story doesn't comfort me. It makes me feel guilty, and god knows I don't need THAT. If I'm supposed to somehow ENJOY Stephen's autism, then I'm out of luck. Because I don't. I hate it.
"But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland."
That's just it, isn't it? There's nothing very special and very lovely about this. My son is precious and adorable and lovable, but those qualities shine through in spite of the autism...not because of it.
As we make our way into the holiday season, I'd like to wish everyone who takes time out of their day to read my ramblings a happy Thanksgiving - I hope you have a peaceful and wonderful time with family and friends. And if you're making out your Christmas list and want to include Stephen...
Put him down for a first class ticket to Italy.
Tuesday, November 13, 2007
He was behind the couch the WHOLE time
Being at best a lapsed Baptist, and at worst a SERIOUS doubter, I got a chuckle over a bumper sticker I saw a year or so ago: "I found Jesus!" it proclaimed. "He was behind the couch the WHOLE time!"
Now, to some of my church-going friends that probably seems sacrilegious. I beg to differ...if we're to take God at his word, he's everywhere. Including behind the couch.
Okay, I'm stretching it a little, but my point stands. It's a funny bumper sticker, and it exposes the problem (to me) of literally looking for God. I find evidence of God, or a higher power, or whatever you want to call it most often in nature. I'm not alone there, I'm sure.
Recently, though...I had a revelation.
Thus saith the Autism Society of America in its letter to the people: you can find God...IN AUTISM! Yeah...not so funny, that one. At least not to me. Apparently some good God-fearing mother kept looking for help and support in dealing with her autistic son, and, according to Amazon: "Listening to the many preachers on TBN and doing Bible studies, she studied Scriptures to help her understand God's plan for her child's life." TBN? You gotta be kidding me.
I can find evidence of godly things in some unique places, I'll give you that. Reading a perfectly crafted sentence in a book...listening to my son's laughter...that autumn scent in the air when it starts to get cold outside...the barren, windy expanses of desert in the heat of Death Valley...but in autism? Oh, hell no. If I was into believing in the big bad guy from H-E-double hockey sticks, maybe I'd see HIM in the vile thing that is autism. When my child is beating himself over the head in frustration, or coming at me with fingernails clawing, or screaming and crying and I don't know why, it is impossible to see anything remotely reminding me of God. I apologize in advance to any of my readers who are upset by this. Don't hear me saying my child is evil...don't even think it!
I love and adore him, and treasure him. But this THING...this disorder that has taken over his life and mine? I hate it. I detest it. Some days I don't even want to see the word autism written out. And so, in my wandering, doubting way, I am very nearly offended by some other mother telling me I can grow closer to God via my son's devastating problem.
But hold on...I was raised to believe that we can glory in all things...all things work together for good, blah blah blah. Yes, I am a stronger and more independent woman because I deal with autism on a daily basis. Yes, I am bold and forthright when it comes to taking care of my children. But to say that there's a REASON for this? It makes me sick and I refuse to accept it. Because that's what it is, people, if we stop fighting and start "accepting." Nothing will change.
Another clever quip from Amazon: "Here are Scriptures to restore your hope, strengthen your faith and show you that God has a plan for your child's life. Scriptures to promise that God is listening to your every prayer, that He is watching the work and efforts being done on behalf of your children. Scriptures that will empower you to be strong and steadfast, reminding you that with God, nothing is impossible."
"God has a plan for your child's life." Oh, man. That one just sticks in my craw, sayin'? How is it supposed to comfort me that God PLANNED this? God planned that my baby would get the chicken pox from his brother, and that he would wake up this past Friday night crying and wanting me to scratch his little head? God planned that he would drive me completely MAD at my mom's, adjusting the color and tint and brightness of the TV in endless cycles, then screaming till I fixed it so he could do it all again? God planned that?
And this is supposed to be COMFORTING?
So, where does someone like me go for comfort? That's a tough question, and one I can't really answer fully. To be honest, the whole autism thing is really hard on a family, and on a marriage. You get mad, but there's no one to take it out on...so you take it out on each other. That's inherently wrong, but it happens. We find our moments...few and far between...we feel like a family when we manage to go to the park and get home without incident. That precious half-hour between when S. FINALLY goes to sleep and me falling asleep - I should treasure that time more. Every time S. says a word, especially when he actually communicates - that's a source of comfort. When my oldest son comes to tell me he loves me...on his own...there's another source.
We just hold on. To each other, to friendship when we can find it, to music, to books, to traveling when we get the freedom. We find god, or peace, or tranquility, in every tiny scrap of space and time we can.
"Though we might have precious little, it's still precious." ~N. Peart
Now, to some of my church-going friends that probably seems sacrilegious. I beg to differ...if we're to take God at his word, he's everywhere. Including behind the couch.
Okay, I'm stretching it a little, but my point stands. It's a funny bumper sticker, and it exposes the problem (to me) of literally looking for God. I find evidence of God, or a higher power, or whatever you want to call it most often in nature. I'm not alone there, I'm sure.
Recently, though...I had a revelation.
Thus saith the Autism Society of America in its letter to the people: you can find God...IN AUTISM! Yeah...not so funny, that one. At least not to me. Apparently some good God-fearing mother kept looking for help and support in dealing with her autistic son, and, according to Amazon: "Listening to the many preachers on TBN and doing Bible studies, she studied Scriptures to help her understand God's plan for her child's life." TBN? You gotta be kidding me.
I can find evidence of godly things in some unique places, I'll give you that. Reading a perfectly crafted sentence in a book...listening to my son's laughter...that autumn scent in the air when it starts to get cold outside...the barren, windy expanses of desert in the heat of Death Valley...but in autism? Oh, hell no. If I was into believing in the big bad guy from H-E-double hockey sticks, maybe I'd see HIM in the vile thing that is autism. When my child is beating himself over the head in frustration, or coming at me with fingernails clawing, or screaming and crying and I don't know why, it is impossible to see anything remotely reminding me of God. I apologize in advance to any of my readers who are upset by this. Don't hear me saying my child is evil...don't even think it!
I love and adore him, and treasure him. But this THING...this disorder that has taken over his life and mine? I hate it. I detest it. Some days I don't even want to see the word autism written out. And so, in my wandering, doubting way, I am very nearly offended by some other mother telling me I can grow closer to God via my son's devastating problem.
But hold on...I was raised to believe that we can glory in all things...all things work together for good, blah blah blah. Yes, I am a stronger and more independent woman because I deal with autism on a daily basis. Yes, I am bold and forthright when it comes to taking care of my children. But to say that there's a REASON for this? It makes me sick and I refuse to accept it. Because that's what it is, people, if we stop fighting and start "accepting." Nothing will change.
Another clever quip from Amazon: "Here are Scriptures to restore your hope, strengthen your faith and show you that God has a plan for your child's life. Scriptures to promise that God is listening to your every prayer, that He is watching the work and efforts being done on behalf of your children. Scriptures that will empower you to be strong and steadfast, reminding you that with God, nothing is impossible."
"God has a plan for your child's life." Oh, man. That one just sticks in my craw, sayin'? How is it supposed to comfort me that God PLANNED this? God planned that my baby would get the chicken pox from his brother, and that he would wake up this past Friday night crying and wanting me to scratch his little head? God planned that he would drive me completely MAD at my mom's, adjusting the color and tint and brightness of the TV in endless cycles, then screaming till I fixed it so he could do it all again? God planned that?
And this is supposed to be COMFORTING?
So, where does someone like me go for comfort? That's a tough question, and one I can't really answer fully. To be honest, the whole autism thing is really hard on a family, and on a marriage. You get mad, but there's no one to take it out on...so you take it out on each other. That's inherently wrong, but it happens. We find our moments...few and far between...we feel like a family when we manage to go to the park and get home without incident. That precious half-hour between when S. FINALLY goes to sleep and me falling asleep - I should treasure that time more. Every time S. says a word, especially when he actually communicates - that's a source of comfort. When my oldest son comes to tell me he loves me...on his own...there's another source.
We just hold on. To each other, to friendship when we can find it, to music, to books, to traveling when we get the freedom. We find god, or peace, or tranquility, in every tiny scrap of space and time we can.
"Though we might have precious little, it's still precious." ~N. Peart
Wednesday, November 7, 2007
Reality Bites (or, The Great Cosmic Joke)
I knew it was hanging there, waiting. I mean, that's the way I've come to live my life...knowing it's up there. It's always just a matter of time till it falls.
Anybody who knows me knows how much I love shoes...but I've gotten away from shopping for them (when I have the funds) and moved toward expecting big heavy ones to fall on my head. I've fooled myself into thinking that I'm helping myself somehow by living with the expectation that the worst is going to happen...that by expecting bad things, I'll either be relieved when they don't happen, or resigned when they do.
But it doesn't really work. Maybe I'm finally accepting that being a pessimist just isn't worth the energy. Because living that way tends to kind of suck the happiness out of your day...
Oh, the shoe...yeah, it clunked me on the head yesterday. Things had been going deceptively well, and I had relaxed a bit. I actually had a day and a night to myself last weekend. D. and K. went on a Scout trip, and my mom graciously agreed to keep S. for the night. It was heaven just to sit in my house and do whatever I wanted. Solitude is a rare and beautiful thing, and I soaked it up. Then, so far, we've had a pretty good week, sprinkled with the usual minor disturbances, but nothing big. Just as I was about to BREATHE for a change, yesterday afternoon my cell phone rang. *cue ominous music*
It was S.'s teacher. She had been acting a bit odd lately, missing days of school and so forth - and we were suspicious. I thought she might be pregnant...but it turns out she's leaving after this term of school. Her husband found a job 2 hours away, and so...that's it. I felt the light go out of the otherwise beautiful day. This woman has been a godsend, if such a thing exists. S.'s teacher in his kindergarten year was a helmet...I mean, this guy didn't have a clue. We struggled through that year and school was a constant source of stress for everyone concerned. But then they awarded him a pink slip, and we moved on. Then his current teacher arrived, and after a week we were elated by the way she handled the classroom and encouraged by her quiet strength as she dealt with S.'s behaviors. Since then he has made tremendous progress. In the year and half he's been under her supervision, he has come to ADORE going to school. As I've mentioned, he is reading now, and doing amazingly well.
And she's LEAVING.
I can admit that my first reaction was one of anger. My life revolves around S. Our whole family dances to the rhythm he improvises. So how in the hell does his teacher think she's going to just up and leave us, high and dry? She can't live her life and go with her husband! Where are your priorities, lady?
The rational part of me (hey, it's small, but it's there!) knew that was just a dumb way to be. But I let myself feel angry, because I've learned not to squash any feeling that needs to be felt. It's just not good for you, you know? But I kept it in control and muttered the necessary, "Well, we're happy for you guys, but we're sad to see you go." (Translation: How could you DO this to us? School was the one thing I didn't worry about!)
But now it IS time to worry. Or, gritting my teeth while trying to be more positive: it's time to be concerned. It's time to put on the gear and get ready to do battle. To advocate for my child, as the PC-patrol puts it. Forget how I don't WANT to do this again. Forget how I'm sick and tired of having to fight for things. Remember S. and his progress, and make sure that continues. I've put in the phone calls to the higher-ups in the school system. Now it's a matter of waiting for them to get around to calling me back so that I can begin to make sure everyone involved has S.'s best interests at heart.
Still, I find myself shaking my head over the cosmic joke that is my life (to borrow a phrase from a friend of mine). When I told my mom about the teacher leaving, she said, "I swear...it's like we get one thing taken care of and something ELSE happens." Ain't it the truth, Ma?
It begins to get very difficult to make sense out of life when you try to see cause and effect. Some people seem to skate through life, blissfully unaware of how their actions (or lack of) can impact others. You know who I'm talking about...the people whose lives never get touched by any real tragedy, or the people who seem to stumble into windfall after windfall, never doing anything to earn what they have... I, on the other hand, was raised as a good Baptist girl. If you're good, God will bless you. If you're bad, God will curse you. Simple! It's a fantastic way to grow up, isn't it? God is a big mean man who's just WAITING for you to screw up. So I obligingly became a perfectionist. The better I did in school, the prouder my parents were. "She never gives us any trouble," they'd pontificate to their friends. Oh, dear parental unit, I got into plenty of trouble. YOU just never knew about it. Talk about pressure. The point is I taught myself from an early age that as long as I did the "right" thing, or at least it LOOKED like I was doing the right thing, everything would be all right. And it was. For a while.
Now, I've learned some lessons. Life has jerked me around plenty. All that goodness I stored up? Not worth a hill o'beans...at least not for the purposes I had originally intended. At heart I'm still a "good" person...I'd like to think I have ethics, integrity, and stuff. But I discovered, as my favorite writer-who-happens-to-be-a-drummer, Neil Peart, did, that the "you DO good, you GET good" philosophy doesn't hold water. Sometimes...a LOT of times...you do good, and you get kicked in the teeth. Being a whole person, living life fully and well, and doing my best to be a good person...I can't do that to see what it'll get me. We've learned that's not the way it works, haven't we? No, you do that because...well, just because. The alternative is unacceptable. It feels wrong, it's negative. It's a bummer, man.
So now what? Do I give in and become a dried up old cynic? I've got plenty of reasons to do that. Some days I literally glory in being as snarky and pessimistic as I can. But ultimately that's just a mask I wear. The real me comes out, and at the craziest times, too. Last weekend when I was by myself at home, making myself breakfast, I found myself humming. The simple domestic act of making eggs and bacon, and sitting down in my (temporarily) quiet living room made me HAPPY. Either I've gone off the deep end, or...I still have hope. I have a tiny little sanctuary deep inside...a place that I can go, and know that all is well. Not forever. Maybe not even for a day. But for an hour, I felt peace.
The other night I was reading to S., and I stepped outside myself long enough to look at him...really LOOK. His shining hair, tousled in that little boy way, his eyes bright and focused as he listened and supplemented my reading with his own pronunciations...the way he laughed with pure delight when we got to a funny part, and then put his arm around my neck to hug me. Wow...that's the stuff, you know? My heart resonated with his at that moment, and everything in the universe seemed to be exactly as it should be. It only lasted for the briefest moment, but...it was real peace. I recognized it for what it was.
That's enough to convince me that I really have made the choice to go through life leaning more towards hope than desperation...not because I've been "good" and earned anything, but because that's who I am, for whatever reason. I will always and forever grieve the boy that S. could have and SHOULD have been. I will always be sad that autism has lowered its shadow over our lives. Many days, I know I'll still want to give up and get fitted for that straight jacket I've been eyeing for a few years now. (If you're reading this and I'm sitting in a corner somewhere talking to myself and drooling, I'd like the green one. Thanks.)
Call it karma, or good will, or being a person with integrity - it doesn't matter. I have to live my life, living with what I've been dealt, doing the best I can. Some days I won't do well. Some days will be horrible and nasty and heart wrenching. But I'm going to stop looking up, waiting for the shoe to fall, or the sky to fall, or one of those big iron safes from Looney Tunes to fall. I'm just going to live in the moment, and meet things as they come. I need my energy for other things. Like playing with my sons while they're still young enough to care...or taking that English class next semester.
Or shoe shopping. :-)
Anybody who knows me knows how much I love shoes...but I've gotten away from shopping for them (when I have the funds) and moved toward expecting big heavy ones to fall on my head. I've fooled myself into thinking that I'm helping myself somehow by living with the expectation that the worst is going to happen...that by expecting bad things, I'll either be relieved when they don't happen, or resigned when they do.
But it doesn't really work. Maybe I'm finally accepting that being a pessimist just isn't worth the energy. Because living that way tends to kind of suck the happiness out of your day...
Oh, the shoe...yeah, it clunked me on the head yesterday. Things had been going deceptively well, and I had relaxed a bit. I actually had a day and a night to myself last weekend. D. and K. went on a Scout trip, and my mom graciously agreed to keep S. for the night. It was heaven just to sit in my house and do whatever I wanted. Solitude is a rare and beautiful thing, and I soaked it up. Then, so far, we've had a pretty good week, sprinkled with the usual minor disturbances, but nothing big. Just as I was about to BREATHE for a change, yesterday afternoon my cell phone rang. *cue ominous music*
It was S.'s teacher. She had been acting a bit odd lately, missing days of school and so forth - and we were suspicious. I thought she might be pregnant...but it turns out she's leaving after this term of school. Her husband found a job 2 hours away, and so...that's it. I felt the light go out of the otherwise beautiful day. This woman has been a godsend, if such a thing exists. S.'s teacher in his kindergarten year was a helmet...I mean, this guy didn't have a clue. We struggled through that year and school was a constant source of stress for everyone concerned. But then they awarded him a pink slip, and we moved on. Then his current teacher arrived, and after a week we were elated by the way she handled the classroom and encouraged by her quiet strength as she dealt with S.'s behaviors. Since then he has made tremendous progress. In the year and half he's been under her supervision, he has come to ADORE going to school. As I've mentioned, he is reading now, and doing amazingly well.
And she's LEAVING.
I can admit that my first reaction was one of anger. My life revolves around S. Our whole family dances to the rhythm he improvises. So how in the hell does his teacher think she's going to just up and leave us, high and dry? She can't live her life and go with her husband! Where are your priorities, lady?
The rational part of me (hey, it's small, but it's there!) knew that was just a dumb way to be. But I let myself feel angry, because I've learned not to squash any feeling that needs to be felt. It's just not good for you, you know? But I kept it in control and muttered the necessary, "Well, we're happy for you guys, but we're sad to see you go." (Translation: How could you DO this to us? School was the one thing I didn't worry about!)
But now it IS time to worry. Or, gritting my teeth while trying to be more positive: it's time to be concerned. It's time to put on the gear and get ready to do battle. To advocate for my child, as the PC-patrol puts it. Forget how I don't WANT to do this again. Forget how I'm sick and tired of having to fight for things. Remember S. and his progress, and make sure that continues. I've put in the phone calls to the higher-ups in the school system. Now it's a matter of waiting for them to get around to calling me back so that I can begin to make sure everyone involved has S.'s best interests at heart.
Still, I find myself shaking my head over the cosmic joke that is my life (to borrow a phrase from a friend of mine). When I told my mom about the teacher leaving, she said, "I swear...it's like we get one thing taken care of and something ELSE happens." Ain't it the truth, Ma?
It begins to get very difficult to make sense out of life when you try to see cause and effect. Some people seem to skate through life, blissfully unaware of how their actions (or lack of) can impact others. You know who I'm talking about...the people whose lives never get touched by any real tragedy, or the people who seem to stumble into windfall after windfall, never doing anything to earn what they have... I, on the other hand, was raised as a good Baptist girl. If you're good, God will bless you. If you're bad, God will curse you. Simple! It's a fantastic way to grow up, isn't it? God is a big mean man who's just WAITING for you to screw up. So I obligingly became a perfectionist. The better I did in school, the prouder my parents were. "She never gives us any trouble," they'd pontificate to their friends. Oh, dear parental unit, I got into plenty of trouble. YOU just never knew about it. Talk about pressure. The point is I taught myself from an early age that as long as I did the "right" thing, or at least it LOOKED like I was doing the right thing, everything would be all right. And it was. For a while.
Now, I've learned some lessons. Life has jerked me around plenty. All that goodness I stored up? Not worth a hill o'beans...at least not for the purposes I had originally intended. At heart I'm still a "good" person...I'd like to think I have ethics, integrity, and stuff. But I discovered, as my favorite writer-who-happens-to-be-a-drummer, Neil Peart, did, that the "you DO good, you GET good" philosophy doesn't hold water. Sometimes...a LOT of times...you do good, and you get kicked in the teeth. Being a whole person, living life fully and well, and doing my best to be a good person...I can't do that to see what it'll get me. We've learned that's not the way it works, haven't we? No, you do that because...well, just because. The alternative is unacceptable. It feels wrong, it's negative. It's a bummer, man.
So now what? Do I give in and become a dried up old cynic? I've got plenty of reasons to do that. Some days I literally glory in being as snarky and pessimistic as I can. But ultimately that's just a mask I wear. The real me comes out, and at the craziest times, too. Last weekend when I was by myself at home, making myself breakfast, I found myself humming. The simple domestic act of making eggs and bacon, and sitting down in my (temporarily) quiet living room made me HAPPY. Either I've gone off the deep end, or...I still have hope. I have a tiny little sanctuary deep inside...a place that I can go, and know that all is well. Not forever. Maybe not even for a day. But for an hour, I felt peace.
The other night I was reading to S., and I stepped outside myself long enough to look at him...really LOOK. His shining hair, tousled in that little boy way, his eyes bright and focused as he listened and supplemented my reading with his own pronunciations...the way he laughed with pure delight when we got to a funny part, and then put his arm around my neck to hug me. Wow...that's the stuff, you know? My heart resonated with his at that moment, and everything in the universe seemed to be exactly as it should be. It only lasted for the briefest moment, but...it was real peace. I recognized it for what it was.
That's enough to convince me that I really have made the choice to go through life leaning more towards hope than desperation...not because I've been "good" and earned anything, but because that's who I am, for whatever reason. I will always and forever grieve the boy that S. could have and SHOULD have been. I will always be sad that autism has lowered its shadow over our lives. Many days, I know I'll still want to give up and get fitted for that straight jacket I've been eyeing for a few years now. (If you're reading this and I'm sitting in a corner somewhere talking to myself and drooling, I'd like the green one. Thanks.)
Call it karma, or good will, or being a person with integrity - it doesn't matter. I have to live my life, living with what I've been dealt, doing the best I can. Some days I won't do well. Some days will be horrible and nasty and heart wrenching. But I'm going to stop looking up, waiting for the shoe to fall, or the sky to fall, or one of those big iron safes from Looney Tunes to fall. I'm just going to live in the moment, and meet things as they come. I need my energy for other things. Like playing with my sons while they're still young enough to care...or taking that English class next semester.
Or shoe shopping. :-)
Thursday, November 1, 2007
Hanging Ten
Halloween with a twist...that's what we had. K. invited a friend to join us for the festivities, which was a good thing. S. doesn't GET Halloween - he loves "The Great Pumpkin," but it gets watched year-round without any recognition of its significance.
So, as you would expect, we try to adapt this holiday to work for us. We squeezed into the car and drove 30 minutes to my hometown...a little college town struggling mightily to retain its small-town vibe - the pharmacy chain store that took over an entire block juxtaposed with the quaint little bookstore that probably sells 3 books per week. My mom's church was hosting a charmingly benign "fall festival" (don't call it Halloween, you heathen!) and we descended en masse upon the crowd, hoping for the best.
I admit that I almost always approach such situations with hands clenched, braced for trouble...it's just so hard to know how S. will react. K. and his friend took off, happy to be on their own for a bit. S. made the rounds of the games and activities, quickly deciding that this wasn't what he wanted to do. We almost caught a break when we thought of looking for an orange Tootsie Pop for him - no substitutions, please - but this elusive piece of candy was not to be found. So, I took him into the church nursery and got him calm with repeated renditions of the Thomas song "Gone Fishing" interspersed with the "Winnie-the-Pooh" theme song. Singing isn't my strong suit, but hey...in this case it calmed the "savage beast." :-)
The older boys eventually exhausted the fall festival opportunities, and so loaded down with candy, we devised tactical plans for the next part of the evening. My mom took S. to swing by McD's for his usual. We took the older boys to the Mexican restaurant we had decided on, ordered food, and apparently the planets were aligned because our food arrived just as my mom and Stephen did...and that, folks, makes for a pretty pleasant meal - as far as we're concerned.
My mom took S. to her house, and we took K. and friend trick or treating...and that was fine, and fun, and reminded me constantly of my own childhood, running down those same dark streets with costume dragging and pumpkin growing heavier with candy. Even in those happy moments, though, there's always a twinge of "if only." If only that was S. running behind his big brother...laughing with him and trading candy in the backseat as we drive to another street...
We picked up S. and started for home...the older boys quiet and tired from the evening's adventures, and S. chattering and singing in his language. It was late and I didn't want K.'s friend to be the beneficiary of any errant slaps from the young gentleman in the booster seat...so I sat between my sons in the backseat, just in case S. got rowdy. K. leaned his tousled and slighty sweaty head on my shoulder, and at that moment I was conscious of how fiercely I love this boy whom I've watched grow from toddler to little boy to bigger boy...I buried my nose in his hair and reveled in that boy-smell...grass and shampoo and fresh air and sweat. Then, a small slightly sticky hand reaches from the other side of the car and touches my face.
My thoughts spin wildly, like a needle on a compass. If only...if only THIS boy was like his brother. If only... But I have to stop there. Not going down this road again. I turned to face him and am rewarded with an ecstatic smile, and I'm aware that my face mirrors his. When this kid is on...he's ON, and it's tough to resist him. I know in my heart of hearts that I would lay down my life for him just as quickly as I would for his brother. Two such different children, both inspiring the same undying love and commitment.
And that brings me to surfing. You're with me here, right?
Okay, that was random, but I do have a point. That commitment to parenting I mentioned - it often gets called into play. You don't want to drive 30 minutes to eat school cafeteria food, but you do it because your child wants you to...you don't want to get up at 3:00, but you do it when they wake up and can't sleep...you go the extra mile for them. And, apparently, you drive across the country to take your autistic child to surfing camp!
What?
I'll admit that my cynicism has grown by leaps and bounds. I'm as skeptical as you can be about some of these "miracle" cures. But when D. and I sat down the other night to watch "Nightline," only to be regaled with the "heartwarming story" of this surfing camp in California that caters to autistic children - my BS meter went crazy. It's not that I think autistic children shouldn't surf...IF THEY WANT TO. Hell, let them ride a unicycle while juggling. Let them roll around in the grass. Those things do not a miracle cure make. We watched while screaming children were wrestled into lifejackets, lifted bodily and carried, shrieking, into the waves. Some of them eventually got up on the boards. I even saw a smile or two. But one precious boy who had been forced to go out with his "surfing buddy" came in, and as his buddy walked him up to his parents he was asked if that was fun. "Y-y-yes...but please don't make me go back! PLEASE!!! Please take me back to the Best Western..." And then the smug and smarmy Nightline correspondent continues to intone how this activity calms the children...about how their parents are often "amazed" at the difference the hour of surfing makes...
Come on. My son loves the pool...and we spent as much time there as we could this past summer...and yes, he was calm and easy to care for while he was there. Does that make chlorinated swimming pools every parents' answer for their child? He also loves to play in fresh, foamy dishwater. Should I start a "Bubble Sink" camp?
Forgive me, dear reader, for what I know seems like bitter vitriol dripping off the page. But I've grown tired of these "human interest" stories about autism...they are misleading, they often offer false hope, and they just plain don't tell it like it is. Not really. Not for families like mine. I don't want some perfectly coiffed journalist smiling at me from the TV, his face carefully composed in that "I care and I am passing on quality information" expression, telling me that the latest fad/treatment/diet is helping SO many kids.
I've shared this movie clip with friends and family...THIS is what autism does to a family. Watch it and understand. http://206.252.155.61/media/d_200603_EveryDay16x9_512k.wmv
It's about survival, adaptation, rolling with the punches...not hanging ten, dude.
So, as you would expect, we try to adapt this holiday to work for us. We squeezed into the car and drove 30 minutes to my hometown...a little college town struggling mightily to retain its small-town vibe - the pharmacy chain store that took over an entire block juxtaposed with the quaint little bookstore that probably sells 3 books per week. My mom's church was hosting a charmingly benign "fall festival" (don't call it Halloween, you heathen!) and we descended en masse upon the crowd, hoping for the best.
I admit that I almost always approach such situations with hands clenched, braced for trouble...it's just so hard to know how S. will react. K. and his friend took off, happy to be on their own for a bit. S. made the rounds of the games and activities, quickly deciding that this wasn't what he wanted to do. We almost caught a break when we thought of looking for an orange Tootsie Pop for him - no substitutions, please - but this elusive piece of candy was not to be found. So, I took him into the church nursery and got him calm with repeated renditions of the Thomas song "Gone Fishing" interspersed with the "Winnie-the-Pooh" theme song. Singing isn't my strong suit, but hey...in this case it calmed the "savage beast." :-)
The older boys eventually exhausted the fall festival opportunities, and so loaded down with candy, we devised tactical plans for the next part of the evening. My mom took S. to swing by McD's for his usual. We took the older boys to the Mexican restaurant we had decided on, ordered food, and apparently the planets were aligned because our food arrived just as my mom and Stephen did...and that, folks, makes for a pretty pleasant meal - as far as we're concerned.
My mom took S. to her house, and we took K. and friend trick or treating...and that was fine, and fun, and reminded me constantly of my own childhood, running down those same dark streets with costume dragging and pumpkin growing heavier with candy. Even in those happy moments, though, there's always a twinge of "if only." If only that was S. running behind his big brother...laughing with him and trading candy in the backseat as we drive to another street...
We picked up S. and started for home...the older boys quiet and tired from the evening's adventures, and S. chattering and singing in his language. It was late and I didn't want K.'s friend to be the beneficiary of any errant slaps from the young gentleman in the booster seat...so I sat between my sons in the backseat, just in case S. got rowdy. K. leaned his tousled and slighty sweaty head on my shoulder, and at that moment I was conscious of how fiercely I love this boy whom I've watched grow from toddler to little boy to bigger boy...I buried my nose in his hair and reveled in that boy-smell...grass and shampoo and fresh air and sweat. Then, a small slightly sticky hand reaches from the other side of the car and touches my face.
My thoughts spin wildly, like a needle on a compass. If only...if only THIS boy was like his brother. If only... But I have to stop there. Not going down this road again. I turned to face him and am rewarded with an ecstatic smile, and I'm aware that my face mirrors his. When this kid is on...he's ON, and it's tough to resist him. I know in my heart of hearts that I would lay down my life for him just as quickly as I would for his brother. Two such different children, both inspiring the same undying love and commitment.
And that brings me to surfing. You're with me here, right?
Okay, that was random, but I do have a point. That commitment to parenting I mentioned - it often gets called into play. You don't want to drive 30 minutes to eat school cafeteria food, but you do it because your child wants you to...you don't want to get up at 3:00, but you do it when they wake up and can't sleep...you go the extra mile for them. And, apparently, you drive across the country to take your autistic child to surfing camp!
What?
I'll admit that my cynicism has grown by leaps and bounds. I'm as skeptical as you can be about some of these "miracle" cures. But when D. and I sat down the other night to watch "Nightline," only to be regaled with the "heartwarming story" of this surfing camp in California that caters to autistic children - my BS meter went crazy. It's not that I think autistic children shouldn't surf...IF THEY WANT TO. Hell, let them ride a unicycle while juggling. Let them roll around in the grass. Those things do not a miracle cure make. We watched while screaming children were wrestled into lifejackets, lifted bodily and carried, shrieking, into the waves. Some of them eventually got up on the boards. I even saw a smile or two. But one precious boy who had been forced to go out with his "surfing buddy" came in, and as his buddy walked him up to his parents he was asked if that was fun. "Y-y-yes...but please don't make me go back! PLEASE!!! Please take me back to the Best Western..." And then the smug and smarmy Nightline correspondent continues to intone how this activity calms the children...about how their parents are often "amazed" at the difference the hour of surfing makes...
Come on. My son loves the pool...and we spent as much time there as we could this past summer...and yes, he was calm and easy to care for while he was there. Does that make chlorinated swimming pools every parents' answer for their child? He also loves to play in fresh, foamy dishwater. Should I start a "Bubble Sink" camp?
Forgive me, dear reader, for what I know seems like bitter vitriol dripping off the page. But I've grown tired of these "human interest" stories about autism...they are misleading, they often offer false hope, and they just plain don't tell it like it is. Not really. Not for families like mine. I don't want some perfectly coiffed journalist smiling at me from the TV, his face carefully composed in that "I care and I am passing on quality information" expression, telling me that the latest fad/treatment/diet is helping SO many kids.
I've shared this movie clip with friends and family...THIS is what autism does to a family. Watch it and understand. http://206.252.155.61/media/d_200603_EveryDay16x9_512k.wmv
It's about survival, adaptation, rolling with the punches...not hanging ten, dude.