Less than a week away, to be precise. I suppose I'm ready, at least on the surface. Most of the presents are purchased, if not wrapped, and things are settled as far as most of our holiday plans, such as they are...
Since I last wrote, Stephen has been doing pretty well. The child adores going to school - and today is the last day he'll be there for two weeks. I have to admit that I feel more than a little trepidation about this. The abrupt lack of structure and the innate craziness of holiday time could add up to problems for him. The only thing we can do is try to keep him busy, and do our best to plan a few outings so that he isn't cooped up inside all the time. But still, I worry. There's that squirmy feeling in my stomach that I really, really get sick of...
I think one of the main sources of my stress comes from that uneasy, unsure way of life. I sometimes feel like I'm walking on a tightrope, balancing a bunch of plates or something. Trying desperately to move forward but nearly motionless because I'm trying not to DROP anything. Will Stephen sleep tonight? Will he wake up too early and refuse to let me turn on the lights? Will he be okay at school? Will he get that stomach virus that's inevitably going around?
I just realized that last paragraph makes me seem like a world-class worrywart - and perhaps that's a fair assessment. But the problem is that those things DO happen. Maybe not regularly, but often enough to put the questions in my head frequently. And it gets crowded up there.
Last year's holiday time went pretty smoothly - in fact, I wrote about it here. I have no real reason to think that this year WON'T go as smoothly. So why torture myself with the "what if's"? I don't know. Maybe I'm just naturally a pessimistic person...for years I have often let myself imagine the worst possible outcomes, hoping to be pleasantly surprised when the worst DIDN'T happen.
That's kind of sick, now that I think about it.
Pausing to type this on my last day of work, as I contemplate two weeks off to enjoy Christmas and time with family, I am reminded of the holiday tradition of counting one's blessings, and I certainly have some worth counting...
A husband who has worked so hard this year as he helps take care of our family. Two boys who love me, and who make me smile every single day. My parents, who, while they are growing older, still do so much to help and support us. And I'm thankful to have a good job - in this day and age I am more grateful than ever for that security. I have friends who care, good music to listen to, and books waiting to be read.
I am thankful that Stephen has improved so much - those of you who have known me for years can see his progress. Some days it seems achingly slow...but undoubtedly he has come a long way. There's a long, long way to go. I hope that a (pleasant?) break will energize those of us walking beside him as he struggles to take steps forward. He is a joy and a bundle of cuddly affection - everyone who spends time with him loves him completely. Merry Christmas, baby mine.
I am thankful that Kerry is growing into the finest of young men. Yes, the Pokemon/Nintendo/Wii obsession gets a bit old, but at heart he is still our golden child. I look at him and see the chubby cheeked, tow-headed toddler that stole my heart a long time ago - and I also see a tall, handsome "almost-tween" with braces, hair in his eyes, and the best sense of humor a ten year old ever had. Merry Christmas, Kerry. You make me proud every day.
I am thankful that David has had such a good year, overall. Watching him grow and struggle with important issues, I have seen how strong he is. Merry Christmas, David. There are great things ahead for you. Trust that.
And I'm thankful to all of you - the named AND the nameless who have read and cried and supported me through this blog. Thank you for letting me give "voice" to my joys and sorrows, to the pain that sometimes threatens to tear me apart, and to the triumphs that lift me above the fray. I hope the Christmas season brings you bright shining moments and calm, peaceful times with loved ones. May the New Year bring us closer to a cure, and to each other.
Friday, December 19, 2008
Monday, November 17, 2008
An ill wind
So now I see what I get when I dare to blog about how well things are going.
About two weeks ago, Stephen started feeling a bit under the weather. Of course, it takes a series of complicated algorithms along with some pretty serious guesswork to figure out that he’s sick. Sometimes he acts like he feels bad and I have no idea what’s wrong – sometimes his cheeks feel hot but he acts like he feels fine. How’s a mother to know?
Why, take his temperature, you might say.
Yes, and after that I’ll split the atom in my kitchen.
Anyway, we determined that his throat was sore, and after a day or two of lessened appetite, I took him to the pediatrician who poked and prodded with considerable difficulty – and to her credit, swabbed his throat for strep herself (after he bit two of the swabs in half). Strep was negative, he seems to have a croup virus, keep an eye on him, etc. etc.
A few more days pass and a cough develops – a nasty, take-your-breath, cough-up-nastiness kind of cough. I heard a raspy crackle in his throat one night and then noticed after he went to sleep that his breathing was very shallow and rapid. I called the nurse-on-call, who very helpfully listened and counted his resps over the phone. She told me that yes, it was fast, but not alarmingly so. I also asked her if there was a kind of cough suppressant that comes in a tablet to allow crushing and mixing with tea (which is how I give Stephen his nighttime meds) – but she said no. She advised me to see how he was the next morning and maybe call the doctor’s office back. I did that, and the nurse asked me to bring Stephen back.
So back we go, and the doctor listens to his chest (which he sat still for!) and tells me that it still sounds okay. She said that if a few more days of nasty coughing went on, to let her know and they’d call in an antibiotic to the pharmacy, just in case. I reminded her that Stephen would sooner recite Shakespeare than take a thrice-daily/ 10-day course of Amoxicillin, and so she said she’d keep that in mind. Two more days pass, and the cough is persisting. He’s coughing every two minutes and all through the night. The doctor’s office calls in a “Z-pack,” that five-day wonder drug – and I went through the crushing of the pills and the mixing of the tea, and Stephen would have no part of it. He followed the same routine as with the cough syrup and the ibuprofen – swish in mouth, taste suspect ingredient, spit out entire contents of mouth wherever you happen to be sitting or standing. Of course the Z-pack pill was so bitter it would curl your nose hair…
It is supremely frustrating as a mother to have tools at your disposal that will help your child feel better, and not be able to use them…to be unable to tell your child that yes, it tastes yucky, but it’ll make your hot cheeks cool down, and your scratchy sore throat feel better, and your nasty cough calm down. One afternoon I was watching TV for a bit, and I saw a commercial for those Triaminic Thin Strips - a mom awoke to hear her son calling her because he had a bad cough, and she went to him, lovingly popped a Thin Strip into his mouth, and everybody settled back down peacefully. Easy! That stupid commercial made THIS overwrought, over-emotional mom cry like a baby. How can it be so easy for some people? How DARE they flaunt the ease with which they medicate their children! I couldn't get one of those strips in Stephen's mouth with a crowbar. And folks, I get so damned mad that things are often so over-the-top hard with him.
But, we kept going, much in the same way. He’d go to school and be okay, except for not eating much. By the time I’d get home from work, he’d have bright red cheeks and be hot all over. He’d spend the evenings in his bed, just laying there, not being Stephen…and my heart was breaking, not to mention the fact that I was just tired of him being sick. That sounds so awful, but honestly…sometimes it feels like there is no let-up, no reprieve at all.
Friday I took a rare day off from work, and spent the day doing whatever I wanted – what pure luxury! I was able to get outside and do some hiking, and those couple of hours were the best medicine I could’ve been given. To be alone – that in itself was an indescribable joy – and to be free to walk, or sit, or listen to the silence…this is something I must remember to repeat whenever I can. I brought along a small notebook, and stopped at one point to make some notes to mark this occasion. The silence was so absolute that I could hear leaves falling from the trees. I sat for many minutes just HEARING that. It was cool and quiet and lovely – I was surrounded by trees whose leaves had turned yellow-gold, and the small amount of sunlight that fell into the clearing was tinted with brightness and warmth. It was quite honestly the most life-affirming thing I’ve experienced in quite some time. In my journal I wrote in big letters: PEACE. That covered it.
And then, it was over. I picked up the boys at school (another rare delight for me) and we went to McDonald’s for a treat. Stephen picked over his favorite meal (“fries-burger-donalds-hungry” is the litany) and sort of gagged and threw up a little, right at the table.
Ah, jeez. His teacher had just told me a stomach virus was going around. Is there truly no balm in Gilead?
But he didn’t seem nauseated. After that…umm…situation…he picked back up and kept eating. David and Kerry and I sat there, eyes trained on Stephen as if he were a bomb that would explode any minute. Actually that’s a pretty accurate picture of things, now that I think about it.
We made it through, and went home, and Stephen was jumping and laughing which led to hacking and coughing…he went into a spasm of coughing and I could tell he was getting choked up. He walked to the living room and I followed…I was three steps behind him when he let loose and brought up everything in his stomach. And so I put him in the tub, cleaned up the floor, and wondered when the nightmare would end.
To make a long story short (well, sort of) I’ll tell you that he didn’t have the virus; he was merely coughing so violently that it made him gag. He made it through the rest of Friday and most of Saturday before it happened again. Thanks to David’s quick reflexes we avoided another huge mess – and by yesterday Stephen was noticeably better…acting more Stephen-ish and coughing a bit less, and certainly less violently.
He woke up at 2:00 a.m. today with a coughing jag, but it’s a drier, ticklier kind of cough, and this morning he didn’t cough at all, bless ‘im.
So life goes on, doesn’t it? I have been in contact with a compounding pharmacy to find out what our options might be for the next time (as there will surely be a next time) that this little guy of ours needs to take some medicine.
Wonder if they could compound some antibiotics which look, taste and smell like McDonald’s fries?
About two weeks ago, Stephen started feeling a bit under the weather. Of course, it takes a series of complicated algorithms along with some pretty serious guesswork to figure out that he’s sick. Sometimes he acts like he feels bad and I have no idea what’s wrong – sometimes his cheeks feel hot but he acts like he feels fine. How’s a mother to know?
Why, take his temperature, you might say.
Yes, and after that I’ll split the atom in my kitchen.
Anyway, we determined that his throat was sore, and after a day or two of lessened appetite, I took him to the pediatrician who poked and prodded with considerable difficulty – and to her credit, swabbed his throat for strep herself (after he bit two of the swabs in half). Strep was negative, he seems to have a croup virus, keep an eye on him, etc. etc.
A few more days pass and a cough develops – a nasty, take-your-breath, cough-up-nastiness kind of cough. I heard a raspy crackle in his throat one night and then noticed after he went to sleep that his breathing was very shallow and rapid. I called the nurse-on-call, who very helpfully listened and counted his resps over the phone. She told me that yes, it was fast, but not alarmingly so. I also asked her if there was a kind of cough suppressant that comes in a tablet to allow crushing and mixing with tea (which is how I give Stephen his nighttime meds) – but she said no. She advised me to see how he was the next morning and maybe call the doctor’s office back. I did that, and the nurse asked me to bring Stephen back.
So back we go, and the doctor listens to his chest (which he sat still for!) and tells me that it still sounds okay. She said that if a few more days of nasty coughing went on, to let her know and they’d call in an antibiotic to the pharmacy, just in case. I reminded her that Stephen would sooner recite Shakespeare than take a thrice-daily/ 10-day course of Amoxicillin, and so she said she’d keep that in mind. Two more days pass, and the cough is persisting. He’s coughing every two minutes and all through the night. The doctor’s office calls in a “Z-pack,” that five-day wonder drug – and I went through the crushing of the pills and the mixing of the tea, and Stephen would have no part of it. He followed the same routine as with the cough syrup and the ibuprofen – swish in mouth, taste suspect ingredient, spit out entire contents of mouth wherever you happen to be sitting or standing. Of course the Z-pack pill was so bitter it would curl your nose hair…
It is supremely frustrating as a mother to have tools at your disposal that will help your child feel better, and not be able to use them…to be unable to tell your child that yes, it tastes yucky, but it’ll make your hot cheeks cool down, and your scratchy sore throat feel better, and your nasty cough calm down. One afternoon I was watching TV for a bit, and I saw a commercial for those Triaminic Thin Strips - a mom awoke to hear her son calling her because he had a bad cough, and she went to him, lovingly popped a Thin Strip into his mouth, and everybody settled back down peacefully. Easy! That stupid commercial made THIS overwrought, over-emotional mom cry like a baby. How can it be so easy for some people? How DARE they flaunt the ease with which they medicate their children! I couldn't get one of those strips in Stephen's mouth with a crowbar. And folks, I get so damned mad that things are often so over-the-top hard with him.
But, we kept going, much in the same way. He’d go to school and be okay, except for not eating much. By the time I’d get home from work, he’d have bright red cheeks and be hot all over. He’d spend the evenings in his bed, just laying there, not being Stephen…and my heart was breaking, not to mention the fact that I was just tired of him being sick. That sounds so awful, but honestly…sometimes it feels like there is no let-up, no reprieve at all.
Friday I took a rare day off from work, and spent the day doing whatever I wanted – what pure luxury! I was able to get outside and do some hiking, and those couple of hours were the best medicine I could’ve been given. To be alone – that in itself was an indescribable joy – and to be free to walk, or sit, or listen to the silence…this is something I must remember to repeat whenever I can. I brought along a small notebook, and stopped at one point to make some notes to mark this occasion. The silence was so absolute that I could hear leaves falling from the trees. I sat for many minutes just HEARING that. It was cool and quiet and lovely – I was surrounded by trees whose leaves had turned yellow-gold, and the small amount of sunlight that fell into the clearing was tinted with brightness and warmth. It was quite honestly the most life-affirming thing I’ve experienced in quite some time. In my journal I wrote in big letters: PEACE. That covered it.
And then, it was over. I picked up the boys at school (another rare delight for me) and we went to McDonald’s for a treat. Stephen picked over his favorite meal (“fries-burger-donalds-hungry” is the litany) and sort of gagged and threw up a little, right at the table.
Ah, jeez. His teacher had just told me a stomach virus was going around. Is there truly no balm in Gilead?
But he didn’t seem nauseated. After that…umm…situation…he picked back up and kept eating. David and Kerry and I sat there, eyes trained on Stephen as if he were a bomb that would explode any minute. Actually that’s a pretty accurate picture of things, now that I think about it.
We made it through, and went home, and Stephen was jumping and laughing which led to hacking and coughing…he went into a spasm of coughing and I could tell he was getting choked up. He walked to the living room and I followed…I was three steps behind him when he let loose and brought up everything in his stomach. And so I put him in the tub, cleaned up the floor, and wondered when the nightmare would end.
To make a long story short (well, sort of) I’ll tell you that he didn’t have the virus; he was merely coughing so violently that it made him gag. He made it through the rest of Friday and most of Saturday before it happened again. Thanks to David’s quick reflexes we avoided another huge mess – and by yesterday Stephen was noticeably better…acting more Stephen-ish and coughing a bit less, and certainly less violently.
He woke up at 2:00 a.m. today with a coughing jag, but it’s a drier, ticklier kind of cough, and this morning he didn’t cough at all, bless ‘im.
So life goes on, doesn’t it? I have been in contact with a compounding pharmacy to find out what our options might be for the next time (as there will surely be a next time) that this little guy of ours needs to take some medicine.
Wonder if they could compound some antibiotics which look, taste and smell like McDonald’s fries?
Monday, October 27, 2008
And so it goes
David asked me yesterday if I'd written a new entry lately, and I said no...then, I couldn't help but wonder (thanks, Carrie)...
Why haven't I written a new entry lately?
I guess the quick answer is that not much has been going on, in the larger sense. No huge crises, no earthshattering events, no new problems. So that's good.
The smaller everyday issues persist, of course. Stephen is no closer to being potty-trained than he was at age 3, and to be honest, I haven't concentrated on this issue. I have a book that is supposed to help, but I haven't taken the time to study it. I don't know how long I'd need to spend with him to accomplish this feat, and time is one of the things in short supply lately.
On a positive note, however, I did find a solution to the bedtime bed-wetting/leaking problem. He hasn't given me a hard time about wrapping him up in an extra-absorbent nighttime diaper, so thank goodness for small (HUGE) favors.
Stephen continues to be an extremely picky eater. He is overweight, and it worries me. We've tried to cut down on his serving sizes, but his food choices are basically: carbs, carbs, carbs, an occasional McDonald's burger, and more carbs. Not the best way to stay slim and trim, but again...I don't know how to MAKE him eat fruit or veggies. Perhaps a variation on the popular "first/then" concept would work...he understands that, so that's a possiblity. I'll file that away for future reference.
He is still having a love affair with the wonders that Internet Explorer provides...he spends HOURS surfing his favorite sites, with occasional breaks to hop on the couch, or run to his room. God forbid the DSL start to lag...if it does, then Stephen's mouse-clicking increases in frequency, which slows things down even more... It's very hard to try to teach him to wait, or that he's actually making things worse. Sometimes we have to re-start IE, and that nearly sends him over the edge.
It's sad to see him express his intelligence in so many ways, but at the same time be unable to understand the consequences of certain actions, or to understand that we're trying to help him when things slow down. It also becomes a bit taxing on the ol' nerves to hear the Dora the Explorer theme or the "Everybody Wants to Be a Cat" song from Aristocats start and stop and start and stop and start and stop...he loves repetition, and that's how he learns a lot of things, so I guess we can't have one without the other.
Thankfully he's as enthusiastic as ever about school - every weekend he asks, "Schoo?" and when we say, "We don't go to school today, today's Saturday (or Sunday)." He'll say, "All done schoo - today's Sunday." It's really cute, and it makes me feel great that he's so involved and enjoying his days there. Our school system is the best in the state as far as special education goes, and we are grateful every day for that.
Kerry is plugging along in school as well. He made all A's and was so proud - he worked hard for an A in math. He's such a great kid - we couldn't ask for a better son. I told him the other day that I was proud of him for how hard he works...but also, that I really, really LIKE him. And it's true. I enjoy spending time with him, and it occurred to me that some parents might not be able to say that with a straight face. We hit the jackpot with this kid.
And so it goes...the weather's turning cool here, and I couldn't be happier. This is my favorite time of year, as the days get shorter and the nights cool and crisp. It feels good to be home in the evenings, and to be planning for the holidays. Even with the constant stresses and strains of daily life, I find myself stretching a bit harder toward the positive side of life. The traditional joys of Thanksgiving and Christmas almost always get to me, and force me to be happier, just because I make that choice.
Thanks to everyone who consistently reads this blog, and offers support. You make things easier, and for that I am always grateful.
Why haven't I written a new entry lately?
I guess the quick answer is that not much has been going on, in the larger sense. No huge crises, no earthshattering events, no new problems. So that's good.
The smaller everyday issues persist, of course. Stephen is no closer to being potty-trained than he was at age 3, and to be honest, I haven't concentrated on this issue. I have a book that is supposed to help, but I haven't taken the time to study it. I don't know how long I'd need to spend with him to accomplish this feat, and time is one of the things in short supply lately.
On a positive note, however, I did find a solution to the bedtime bed-wetting/leaking problem. He hasn't given me a hard time about wrapping him up in an extra-absorbent nighttime diaper, so thank goodness for small (HUGE) favors.
Stephen continues to be an extremely picky eater. He is overweight, and it worries me. We've tried to cut down on his serving sizes, but his food choices are basically: carbs, carbs, carbs, an occasional McDonald's burger, and more carbs. Not the best way to stay slim and trim, but again...I don't know how to MAKE him eat fruit or veggies. Perhaps a variation on the popular "first/then" concept would work...he understands that, so that's a possiblity. I'll file that away for future reference.
He is still having a love affair with the wonders that Internet Explorer provides...he spends HOURS surfing his favorite sites, with occasional breaks to hop on the couch, or run to his room. God forbid the DSL start to lag...if it does, then Stephen's mouse-clicking increases in frequency, which slows things down even more... It's very hard to try to teach him to wait, or that he's actually making things worse. Sometimes we have to re-start IE, and that nearly sends him over the edge.
It's sad to see him express his intelligence in so many ways, but at the same time be unable to understand the consequences of certain actions, or to understand that we're trying to help him when things slow down. It also becomes a bit taxing on the ol' nerves to hear the Dora the Explorer theme or the "Everybody Wants to Be a Cat" song from Aristocats start and stop and start and stop and start and stop...he loves repetition, and that's how he learns a lot of things, so I guess we can't have one without the other.
Thankfully he's as enthusiastic as ever about school - every weekend he asks, "Schoo?" and when we say, "We don't go to school today, today's Saturday (or Sunday)." He'll say, "All done schoo - today's Sunday." It's really cute, and it makes me feel great that he's so involved and enjoying his days there. Our school system is the best in the state as far as special education goes, and we are grateful every day for that.
Kerry is plugging along in school as well. He made all A's and was so proud - he worked hard for an A in math. He's such a great kid - we couldn't ask for a better son. I told him the other day that I was proud of him for how hard he works...but also, that I really, really LIKE him. And it's true. I enjoy spending time with him, and it occurred to me that some parents might not be able to say that with a straight face. We hit the jackpot with this kid.
And so it goes...the weather's turning cool here, and I couldn't be happier. This is my favorite time of year, as the days get shorter and the nights cool and crisp. It feels good to be home in the evenings, and to be planning for the holidays. Even with the constant stresses and strains of daily life, I find myself stretching a bit harder toward the positive side of life. The traditional joys of Thanksgiving and Christmas almost always get to me, and force me to be happier, just because I make that choice.
Thanks to everyone who consistently reads this blog, and offers support. You make things easier, and for that I am always grateful.
Wednesday, September 24, 2008
Carnivàle!
I wanted to stop by and actually write about something pleasant for a change. I can be lighthearted! It happens...
Right now the state fair is in full swing, and since it's located about five minutes from our house, we decided we'd give it a shot...the whole family, too, not just David or myself with Kerry. We got ourselves ready, literally and figuratively, grabbed some McD's for Stephen, and then headed over to the fairgrounds. We didn't talk about it, but I'm sure we were all wondering if this was going to work.
We walked in, and the lights and sounds were as chaotic as you'd imagine. Stephen immediately assumed the "fingers in ears" position, but as we watched, a smile broke out on his face. He was drawn to the lights and the motion of the the rides. He stood for a while and watched a little kiddie ride - boats going in a circle, and seemed intrigued. David took Kerry to meet up with a friend, and so Stephen and I watched the boats. We waited for it to stop, I handed over his tickets, and explained to the lady running the ride that he has autism - amazingly she knew what I meant (whaddya know?) and assured me that she'd stop the ride immediately if he had trouble. So, I popped him into a boat and he settled down. He spent a few turns looking unsure, and then, he GOT it. His smile was huge and I could hear him laughing...bingo!
After a bit more walking around, David and Kerry joined us and we took turns walking with Stephen and watching Kerry on rides. Stephen watched and laughed and danced, having a great time. After a while Stephen decided to try another ride...a sort of bumpy-caterpillar-going-in-a-circle ride. Here he is before the ride started, a bit unsure but still happy enough:
But once it got started, the laughter began again. I watched him, bumping around, flapping his hands, and laughing in total delight, and, instead of taking a picture to show you how much fun he was having, I cried. I stood there in the midst of the festive crowd, and cried. David saw me and put his hand on my shoulder. Kerry's friend and his mom were there, and I saw her watching me. It took me a minute to explain, but just being able to put Stephen on a ride like that, by himself, and see him enjoy himself...it got to me. Not only because he was having fun like any kid, but because it hit me how rare those moments are. He's a big 8 1/2 year old boy who should be chasing his big brother and wanting to do everything Kerry does...and instead, because of this damnable DISORDER, he is on the kiddie rides with the 3 year olds. That fact, my friends, inspires what I can only call a bittersweet joy. I think you understand what I'm saying. I'm overjoyed that he has come so far, and angry as hell that he isn't able to do more.
Yet.
Today we were back to business as usual - getting up and getting ready for school. Things have been going well in that regard for the past few weeks. Today he got up early, before I had the lights on, so we had to fight the Battle of Light and Dark again. It took a good 30 minutes of "No, not 'off.' 'ON,' Stephen!" before he calmed down, just in time to get his bag and get to the car.
Ahh, well. Such is life. I'm savoring the memory of a little boy in a red striped shirt, spinning and bumping in a yellow caterpillar, his laughter spilling out into the night.
Right now the state fair is in full swing, and since it's located about five minutes from our house, we decided we'd give it a shot...the whole family, too, not just David or myself with Kerry. We got ourselves ready, literally and figuratively, grabbed some McD's for Stephen, and then headed over to the fairgrounds. We didn't talk about it, but I'm sure we were all wondering if this was going to work.
We walked in, and the lights and sounds were as chaotic as you'd imagine. Stephen immediately assumed the "fingers in ears" position, but as we watched, a smile broke out on his face. He was drawn to the lights and the motion of the the rides. He stood for a while and watched a little kiddie ride - boats going in a circle, and seemed intrigued. David took Kerry to meet up with a friend, and so Stephen and I watched the boats. We waited for it to stop, I handed over his tickets, and explained to the lady running the ride that he has autism - amazingly she knew what I meant (whaddya know?) and assured me that she'd stop the ride immediately if he had trouble. So, I popped him into a boat and he settled down. He spent a few turns looking unsure, and then, he GOT it. His smile was huge and I could hear him laughing...bingo!
After a bit more walking around, David and Kerry joined us and we took turns walking with Stephen and watching Kerry on rides. Stephen watched and laughed and danced, having a great time. After a while Stephen decided to try another ride...a sort of bumpy-caterpillar-going-in-a-circle ride. Here he is before the ride started, a bit unsure but still happy enough:
But once it got started, the laughter began again. I watched him, bumping around, flapping his hands, and laughing in total delight, and, instead of taking a picture to show you how much fun he was having, I cried. I stood there in the midst of the festive crowd, and cried. David saw me and put his hand on my shoulder. Kerry's friend and his mom were there, and I saw her watching me. It took me a minute to explain, but just being able to put Stephen on a ride like that, by himself, and see him enjoy himself...it got to me. Not only because he was having fun like any kid, but because it hit me how rare those moments are. He's a big 8 1/2 year old boy who should be chasing his big brother and wanting to do everything Kerry does...and instead, because of this damnable DISORDER, he is on the kiddie rides with the 3 year olds. That fact, my friends, inspires what I can only call a bittersweet joy. I think you understand what I'm saying. I'm overjoyed that he has come so far, and angry as hell that he isn't able to do more.
Yet.
Today we were back to business as usual - getting up and getting ready for school. Things have been going well in that regard for the past few weeks. Today he got up early, before I had the lights on, so we had to fight the Battle of Light and Dark again. It took a good 30 minutes of "No, not 'off.' 'ON,' Stephen!" before he calmed down, just in time to get his bag and get to the car.
Ahh, well. Such is life. I'm savoring the memory of a little boy in a red striped shirt, spinning and bumping in a yellow caterpillar, his laughter spilling out into the night.
Tuesday, September 2, 2008
What have we become?
I had a disheartening experience over the weekend. I’m sitting here at work, struggling to stay composed, because I feel so very disillusioned with people in general.
On Saturday I took Stephen with me to do some errands, which for the most part usually turns out well. We went to the first stop, Sam’s Warehouse Club, (which I had prepared him for with some pictures before we left home) but he balked at going into the store. I stood inside, calling for him to come in, and finally he walked just inside the automatic doors. There was a scramble for shopping carts – it was chaotic and loud, and eventually I had to elbow my way in just to get my mitts on a cart. Another lady had squeaked around me and gotten her cart, and as I was turning to get Stephen, I heard her say, “Move. MOVE!” in a rude and insistent way. In slow motion I looked to see that she was talking to Stephen, and he stood there resolutely, fingers in his ears and planted in one spot. I put my hand on her shoulder, turned her toward me, and said, “Hey! He has autism!”
“How was I supposed to know that?” she fired back, and pushed her cart into the store.
I was seething. Another lady who had seen this interaction came over to me as I was struggling to lift Stephen into the cart. Usually I can manage but I was shaking and emotional. This lady helped me get Stephen settled as I muttered about “idiots” and “people who make stupid assumptions.” She looked at me kindly and said, “Yes, they sure do.”
Tears still flowing, I pushed Stephen into the store, and then I stopped. Was I going to just let this go? No. I think not. I began to look for the woman who had acted so harshly toward my child. Up and down the aisles we went, incoherent thoughts bubbling through my head. I’m sure I looked unhinged. Finally I spotted her, and, my heart pounding, I approached her. To my best recollection, it went something like this:
“Ma’am?”
She turned to look at me, recognizing me at once.
“You said you didn’t know my son had autism…well, let me tell you that you can’t go around making assumptions about children…how can you DO that?” I was crying full force already.
She looked around nervously and said, “Yes, well…I admit I thought he was just another errant child…”
A solid thought formed and hit me like a ton of bricks. “You know what?” I said, “Even if you had no idea he had autism, how dare you talk to a CHILD like that? Any child?”
“Well…umm…”
“And ma’am? I am having a HARD time with him this morning, and people like YOU don’t make things any easier! You have NO idea what this is like!” More tears, and in my peripheral vision I can see other people listening to me as they pretend to shop for 50 gallon drums of mayo or whatever. She ducked her head and muttered something, then she looked at me. I’m sure I made a great impression – dressed in my Saturday running shorts and T-shirt, ball cap on my head, and tears running down my face. She said, “I’m sorry. I feel the pain you’re feeling.”
I said, “Please, don’t ever assume that a child who seems to be badly behaved is only that…at least till you step back and take a look at the situation,” and Stephen and I went on our way.
The lady who had helped me when we first entered the store walked up – she had been there the whole time. She patted me on the shoulder and said, “Good for you, hon” and walked away.
The rest of the shopping excursion went pretty well, but I was shaken. When we got back to the car I had to sit there for a few minutes before I could drive. The most painful part of this whole experience was the sheer SPEED at which this woman made her assumptions and acted on them. Put the autism factor aside…the fact that an adult would so quickly turn on a child for (gasp!) being in the way of her shopping cart quite frankly broke my heart. This isn’t an isolated incident, either – we’ve all been the recipient of quick anger, have we not? I’m not sure how long ago the phrase “road rage” was coined, but it’s that kind of thing that happens ever more frequently in this culture of ours that frightens me and shakes the very core of my being.
As fate would have it, I’m in the midst of a re-read of the “Mitford” series by Jan Karon. These books are rare in that they have strong religious themes, but so gently and beautifully woven into the story that they comfort me rather than irritate me. If you’ve read them, you know that the little town of Mitford is a Mayberry for the 21st century – in short, the community interacts, cares for, loves, and laughs with each other. I get caught up in that dream when reading – it all seems so RIGHT, and so possible. Do the right thing because it’s the right thing to do. Care for others and they will care for you. Live! Enjoy nature. Enjoy food and wine and poetry and music. That lovely song was still playing in my head when Stephen and I drove up to Sam’s Club on Saturday. The volume went down a bit when he was cranky, but it was playing in the background nonetheless. When the INCIDENT happened, the phonograph needle screeched across the album, and then there was silence, cold and uncaring.
I am heartbroken at the seeming lack of real community. I have searched for it for so long and cannot find it, not in a real, tangible way. I want neighbors who drop by for coffee. I want people who offer help when needed, and who ask for help in return. I want people who KNOW me, who care and know about my life, and whose lives I can know and participate in. I want to stretch, to grow, to learn. I have listened to others decry the age of technology, of instant gratification, of social isolation – and now, I understand. While the computer I use to type these very words is a part of the progress that has certainly benefitted us, what have we given up as payment for these conveniences? We have a million channels on TV, and such a scarcity of quality programming that it makes me sick. Remember when there were four channels, and if nothing was on, we turned it OFF? Remember when you read the newspaper or waited for Walter Cronkite to tell you the news? Now it’s on 24/7, and there’s a struggle to fill every minute with something, whether newsworthy or not.
I know what you're thinking. I sound like one of the old people I used to listen to as they waxed poetic about golden days…and I’m sure that my ten year old son would roll his eyes just as I’m sure I did at his age. Maybe this realization comes only with age. Maybe it takes living a while to figure out what’s really important, I don’t know. I only know that I’m tired of feeling that I live in a glass box. I’ve tried to reach out and more often than not my efforts fall flat. Today I feel like it’s always going to be this way…that my little family might as well be on a desert island. Yes, we have each other, but everyone needs more than that...
In my heart, though, I know myself well enough to know that I can’t give up, not really. I feel that I have a whole world inside me, just waiting for the right people to come along, who recognize a kindred spirit and who want the same things that I want, that my family wants. Until then, I will just keep hoping.
And probably complaining…
On Saturday I took Stephen with me to do some errands, which for the most part usually turns out well. We went to the first stop, Sam’s Warehouse Club, (which I had prepared him for with some pictures before we left home) but he balked at going into the store. I stood inside, calling for him to come in, and finally he walked just inside the automatic doors. There was a scramble for shopping carts – it was chaotic and loud, and eventually I had to elbow my way in just to get my mitts on a cart. Another lady had squeaked around me and gotten her cart, and as I was turning to get Stephen, I heard her say, “Move. MOVE!” in a rude and insistent way. In slow motion I looked to see that she was talking to Stephen, and he stood there resolutely, fingers in his ears and planted in one spot. I put my hand on her shoulder, turned her toward me, and said, “Hey! He has autism!”
“How was I supposed to know that?” she fired back, and pushed her cart into the store.
I was seething. Another lady who had seen this interaction came over to me as I was struggling to lift Stephen into the cart. Usually I can manage but I was shaking and emotional. This lady helped me get Stephen settled as I muttered about “idiots” and “people who make stupid assumptions.” She looked at me kindly and said, “Yes, they sure do.”
Tears still flowing, I pushed Stephen into the store, and then I stopped. Was I going to just let this go? No. I think not. I began to look for the woman who had acted so harshly toward my child. Up and down the aisles we went, incoherent thoughts bubbling through my head. I’m sure I looked unhinged. Finally I spotted her, and, my heart pounding, I approached her. To my best recollection, it went something like this:
“Ma’am?”
She turned to look at me, recognizing me at once.
“You said you didn’t know my son had autism…well, let me tell you that you can’t go around making assumptions about children…how can you DO that?” I was crying full force already.
She looked around nervously and said, “Yes, well…I admit I thought he was just another errant child…”
A solid thought formed and hit me like a ton of bricks. “You know what?” I said, “Even if you had no idea he had autism, how dare you talk to a CHILD like that? Any child?”
“Well…umm…”
“And ma’am? I am having a HARD time with him this morning, and people like YOU don’t make things any easier! You have NO idea what this is like!” More tears, and in my peripheral vision I can see other people listening to me as they pretend to shop for 50 gallon drums of mayo or whatever. She ducked her head and muttered something, then she looked at me. I’m sure I made a great impression – dressed in my Saturday running shorts and T-shirt, ball cap on my head, and tears running down my face. She said, “I’m sorry. I feel the pain you’re feeling.”
I said, “Please, don’t ever assume that a child who seems to be badly behaved is only that…at least till you step back and take a look at the situation,” and Stephen and I went on our way.
The lady who had helped me when we first entered the store walked up – she had been there the whole time. She patted me on the shoulder and said, “Good for you, hon” and walked away.
The rest of the shopping excursion went pretty well, but I was shaken. When we got back to the car I had to sit there for a few minutes before I could drive. The most painful part of this whole experience was the sheer SPEED at which this woman made her assumptions and acted on them. Put the autism factor aside…the fact that an adult would so quickly turn on a child for (gasp!) being in the way of her shopping cart quite frankly broke my heart. This isn’t an isolated incident, either – we’ve all been the recipient of quick anger, have we not? I’m not sure how long ago the phrase “road rage” was coined, but it’s that kind of thing that happens ever more frequently in this culture of ours that frightens me and shakes the very core of my being.
As fate would have it, I’m in the midst of a re-read of the “Mitford” series by Jan Karon. These books are rare in that they have strong religious themes, but so gently and beautifully woven into the story that they comfort me rather than irritate me. If you’ve read them, you know that the little town of Mitford is a Mayberry for the 21st century – in short, the community interacts, cares for, loves, and laughs with each other. I get caught up in that dream when reading – it all seems so RIGHT, and so possible. Do the right thing because it’s the right thing to do. Care for others and they will care for you. Live! Enjoy nature. Enjoy food and wine and poetry and music. That lovely song was still playing in my head when Stephen and I drove up to Sam’s Club on Saturday. The volume went down a bit when he was cranky, but it was playing in the background nonetheless. When the INCIDENT happened, the phonograph needle screeched across the album, and then there was silence, cold and uncaring.
I am heartbroken at the seeming lack of real community. I have searched for it for so long and cannot find it, not in a real, tangible way. I want neighbors who drop by for coffee. I want people who offer help when needed, and who ask for help in return. I want people who KNOW me, who care and know about my life, and whose lives I can know and participate in. I want to stretch, to grow, to learn. I have listened to others decry the age of technology, of instant gratification, of social isolation – and now, I understand. While the computer I use to type these very words is a part of the progress that has certainly benefitted us, what have we given up as payment for these conveniences? We have a million channels on TV, and such a scarcity of quality programming that it makes me sick. Remember when there were four channels, and if nothing was on, we turned it OFF? Remember when you read the newspaper or waited for Walter Cronkite to tell you the news? Now it’s on 24/7, and there’s a struggle to fill every minute with something, whether newsworthy or not.
I know what you're thinking. I sound like one of the old people I used to listen to as they waxed poetic about golden days…and I’m sure that my ten year old son would roll his eyes just as I’m sure I did at his age. Maybe this realization comes only with age. Maybe it takes living a while to figure out what’s really important, I don’t know. I only know that I’m tired of feeling that I live in a glass box. I’ve tried to reach out and more often than not my efforts fall flat. Today I feel like it’s always going to be this way…that my little family might as well be on a desert island. Yes, we have each other, but everyone needs more than that...
In my heart, though, I know myself well enough to know that I can’t give up, not really. I feel that I have a whole world inside me, just waiting for the right people to come along, who recognize a kindred spirit and who want the same things that I want, that my family wants. Until then, I will just keep hoping.
And probably complaining…
Friday, August 29, 2008
Miracles out of nowhere
I haven't had a whole lot to smile about lately, just because life gets me down.
But today....
Today I went to school to meet with Stephen's "team" for his three-year re-evaluation. They needed my permission to start re-testing him so we can see where he is compared to three years ago. They didn't have to, but everyone at the meeting took time to tell me how much they love my son, and how he makes them smile every day, and how they watch him interact and learn, and how it makes their jobs feel so fulfilling, and they thanked me for trusting him into their care. What a powerful thing - to have people trained to do a difficult job thank ME for letting Stephen come to them each day. I was at once humbled and grateful to be in this place at this time.
But the best part was when I snuck down to Stephen's classroom, and peeped in (so that he wouldn't see me). There sat my little wild child, dressed neatly in one of his many striped t-shirts, in a little blue chair. The other kid who's in the room with him most of the time sat beside him, and the aide was having to hold him in his chair. But not Stephen...he sat there independently, facing the teacher, little Nikes planted firmly on the floor, and although I couldn't hear him, I could tell he was participating in circle time, as they talked about animals, and then talked about the day of the week, etc. He flapped his hands a few times but other than that there was no sign of his autism. You can't possibly imagine the elation I felt, getting to see him in this environment.
The little boy who can stir up quite a ruckus at home was sitting at school and learning, just like any other child would. I was on my knees in the hallway, looking through the tiny window, seeing his precious little head and his ears that stick out just enough to be cute...and I couldn't have loved him more. Tears streamed down my face. Proud doesn't even begin to cover it. He has so many dragons still to fight, but today...today I saw the evidence that he has certainly slain a few of those buggers.
Today is a good day, and we like to hold on to those. Mark it down, celebrate it, savor it...they are few and far between at times, but damn it if they don't feel twice as good when they happen. I didn't expect this miracle out of nowhere. Sometimes those are the best kinds.
But today....
Today I went to school to meet with Stephen's "team" for his three-year re-evaluation. They needed my permission to start re-testing him so we can see where he is compared to three years ago. They didn't have to, but everyone at the meeting took time to tell me how much they love my son, and how he makes them smile every day, and how they watch him interact and learn, and how it makes their jobs feel so fulfilling, and they thanked me for trusting him into their care. What a powerful thing - to have people trained to do a difficult job thank ME for letting Stephen come to them each day. I was at once humbled and grateful to be in this place at this time.
But the best part was when I snuck down to Stephen's classroom, and peeped in (so that he wouldn't see me). There sat my little wild child, dressed neatly in one of his many striped t-shirts, in a little blue chair. The other kid who's in the room with him most of the time sat beside him, and the aide was having to hold him in his chair. But not Stephen...he sat there independently, facing the teacher, little Nikes planted firmly on the floor, and although I couldn't hear him, I could tell he was participating in circle time, as they talked about animals, and then talked about the day of the week, etc. He flapped his hands a few times but other than that there was no sign of his autism. You can't possibly imagine the elation I felt, getting to see him in this environment.
The little boy who can stir up quite a ruckus at home was sitting at school and learning, just like any other child would. I was on my knees in the hallway, looking through the tiny window, seeing his precious little head and his ears that stick out just enough to be cute...and I couldn't have loved him more. Tears streamed down my face. Proud doesn't even begin to cover it. He has so many dragons still to fight, but today...today I saw the evidence that he has certainly slain a few of those buggers.
Today is a good day, and we like to hold on to those. Mark it down, celebrate it, savor it...they are few and far between at times, but damn it if they don't feel twice as good when they happen. I didn't expect this miracle out of nowhere. Sometimes those are the best kinds.
Thursday, August 14, 2008
Here we go again
I'm a bad blogger.
No update in over a month. Not even a pathetic little: "Oh, man, what a shitty summer!"
My lack of blogging correlates with my level of stress. Once I pass a certain point it is best for me to avoid writing. Otherwise you'd come here and see something like, "Oh god I want to disappear, everything is horrible, *(&$(*#&$*&^....."
And who needs that? Nah, best to just stew in my juices and wait for school to start back.
And so, it did. Last Thursday. And all our problems were solved!
No update in over a month. Not even a pathetic little: "Oh, man, what a shitty summer!"
My lack of blogging correlates with my level of stress. Once I pass a certain point it is best for me to avoid writing. Otherwise you'd come here and see something like, "Oh god I want to disappear, everything is horrible, *(&$(*#&$*&^....."
And who needs that? Nah, best to just stew in my juices and wait for school to start back.
And so, it did. Last Thursday. And all our problems were solved!
Well, not quite. I was just thinking this morning how we LONGED for August 7. We held on by our fingernails, waiting for the day to come...and now, it's sort of hit-or-miss if Stephen does okay getting ready or not.
But let's back up and talk about how things have been since I last wrote something here. I mentioned the Risperdal, which was FAR from the answer for us. We increased his dosage since the minimal dose didn't do anything to calm him or lessen the tantrums and we noticed a charming side effect. Increased appetite coupled with nausea. How's THAT for a winning combination? Our family trips - going out to eat and maybe to the bookstore - were curtailed because every time the dear boy ate his favorite McD's burger and fries, he puked it all back up. Result? We became even more isolated and angry. Our ONE outlet was gone - the one sort of "normal" thing we could do as a family had been taken away.
The doctor insisted that it wasn't the meds making him sick, since it only seemed to be the McD's food bringing on the puking, but somehow we just KNEW. Okay, sure, you could argue that nobody really needs to eat that crap, but c'mon...we have to fight our battles the way we see fit, and right now, that isn't at the top of the list. Once we decided to cut back on the Risperdal, (we still give him a miniscule amount at bedtime because it helps him sleep) the nausea disappeared. So the medicine that was supposed to make him calmer didn't calm him and gave him nausea. Hooray for Big Pharma!!!
Another summertime development was the fact that Stephen went to a special autism dayschool for 2 hours of therapy 3 days per week. I think it helped marginally - at least it gave his brain something to chew on for a while, but it wasn't nearly enough. I wish I could campaign full-time for year-round school for kids like Stephen. I mean, the school system will acknowledge how important consistency and routine is for kids with autism, but at the end of the school year they wave bye-bye and smile..."Have a GREAT summer, guys!" Yeah, sure. Wanna trade lives for June and July? We need more, and I'm going to fight for it for next year. I simply cannot afford to pay for private therapy; certainly not in the amounts that Stephen needs to keep himself occupied and challenged, and that his family needs to keep from going insane.
There were times over the summer that we all thought, "We can't live like this." The screaming, the "don't do THAT, it might upset him" walking on eggshells, the nights with little to no sleep...all of it together had David, Kerry and myself tied in knots, and escaping any way we could. Kerry dove into the world of Legos he has created for himself, where everything is in his control and he can change it if he doesn't like it...and he also began writing in his journal again. David worked with making CDs and editing music - the headphones are great for blocking out stuff. And I read. I read lots of stuff. The best thing was re-reading the Harry Potter series, all seven books in order, which I hadn't done before. I found myself literally living for the moments I could steal, to bury my nose in a book and send my mind on vacation. I became rather profoundly depressed when I finished the 7th book because THEN what was I going to do? Sit around and THINK? Ha!
The future is a topic that I have often run from...reading provides a nice escape until reality bites me in the ass and I'm forced to contemplate what the future might hold. As it stands, we have an 8 year old who is big and strong and who basically runs our lives. What happens at age 13? 15? 20? I had to come to grips with the harsh reality that one day, I may not be able to care for Stephen. If I'm nervous and afraid to deal with him now, what happens when he's bigger than I am? It's a tough thing to look at, head on. I've turned away from it for the last time. This summer I had to accept that I cannot do it all. You have no idea how painful it is for me to admit that. You might think I have some kind of martyr complex, but I don't. I simply grew up with the idea that pretty much everything in the universe was up to me - keeping everyone happy was MY job. I never outgrew that. Until now.
Not too long ago I had an epiphany of sorts. Someone asked me, quite sincerely, "So, how are YOU doing?" I said, "Well, Stephen's had a pretty good week so far, so..." She interrupted, "No, how are YOU?" I thought for a second and said, "Things have been okay. Stephen has been..." She stopped me once more, and with a gentle reprimand in her voice said, "Michelle...how are YOU? I'm asking about YOU, not about Stephen or anyone else."
Something in me relaxed. Or broke. Or collapsed. I cried without restraint. I couldn't even answer the simple question I had been asked. Someone was asking how I am doing, and I couldn't extricate my own well-being from everyone else's in my life, specifically Stephen's. I realized that day that I couldn't comprehend having a happy life, or being the person that I used to be, as long as I have a son with autism. I had tied my SELF to him. Well, it's understandable, no? Everything he does affects me in some way. How can I be happy if he (or someone else I care for) is UNhappy? I've danced around this topic before, but it all became so clear that day. I feel lost. I feel that the person I used to be no longer exists...
I wish I could tell you that I've made great strides in reclaiming myself. But I haven't. Not yet. I will say that the recognition of the way things are has sparked a tiny bit of hope inside me. I don't know yet how it will be accomplished, but I've been searching out various ways to find some respite - some time that someone else can care for Stephen so that I can remember who I am again. Time for the rest of the family to relax, for Kerry to be able to play without worrying, for us to see movies or go out to eat without being on guard. There are possibilities, and for now, that's enough. It's enough to know deep down that even though I still FEEL like I'm carrying the world on my shoulders, some day I'm going to find some ways to lay it down for a while.
So...back to the grind of school days for both boys...Kerry is in 5th grade and seems pretty happy with his first week so far. Stephen is classified as 3rd grade. His autism-unit teacher seems very capable, and everyone at school already loves the kid. He's in good hands. He will adjust to going back every day, and hopefully life will assume some sort of a pattern so that I can make some plans, and find some real avenues of help. Next summer will be here before I know it, though, so by then, I will have things lined up. We can't go through another summer like this one has been.
Joseph Campbell said, "It is by going down into the abyss that we recover the treasures of life. Where you stumble, there lies your treasure." I've stumbled, Joe. Now, I'm digging for the treasure.
I'll keep you posted.
Saturday, July 5, 2008
Now what?
In the time since I last wrote, Stephen has begun taking risperidone to try to calm his irritability and aggression. We've upped the dose per the doctor's instructions, but it doesn't seem to be helping...not really. At times he is loveable and precious, at others like a demon.
It is heartbreaking.
Here we have a child who knows how to surf the Internet by finding pages in the history, but cannot even begin to comprehend that he has to WAIT if the pages are loading slowly...a child who loves to hear Thomas stories and play with Thomas trains in an almost typical sense, yet cannot understand that he's going to his grandma's AFTER we eat instead of before...a child who loves to watch his own TV yet throws a tantrum if the OTHER TV is turned on at the "wrong" time.
There's depth there...but at the same time the smallest changes throw him into a whirlwind of screaming and crying and beating his head with his small hands.
I don't know what to do. This little boy is tearing our family to pieces, and none of it...NONE of it, is his fault. We march to the beat he devises - there is no other way. It is tiresome in the extreme to feel that autism dictates how our days and weeks and years will go. But it does. Everything must be sifted through the sieve of that detestable disease. I hate it more than I can possibly express here. I hate what it's doing to my husband - a funny and gentle man whose nerves are often left jangling after a day with Stephen. I hate what it's doing to my older son - the shining star whose bright smile and eyes make any day seem worth living...he has taken to writing in a journal, which is healthy, but still makes me sad for him. This isn't the life I had planned for him. And I hate what this is doing to me.
After a really bad afternoon, I asked my mom to take Stephen for the night, and she agreed. I feel bruised and numb, and already worried about what will happen when he comes home. It's that constant feeling of being on alert that is so exhausting.
So what does the future hold? It seems fraught with impossibilities. Put Stephen in a "home" of some sort? I cannot entertain that notion even vaguely. Medicate him more? Maybe. But we need guidance - which seems to be in scarce supply. How do we hold our family together under this kind of stress? I wish that I knew.
It is heartbreaking.
Here we have a child who knows how to surf the Internet by finding pages in the history, but cannot even begin to comprehend that he has to WAIT if the pages are loading slowly...a child who loves to hear Thomas stories and play with Thomas trains in an almost typical sense, yet cannot understand that he's going to his grandma's AFTER we eat instead of before...a child who loves to watch his own TV yet throws a tantrum if the OTHER TV is turned on at the "wrong" time.
There's depth there...but at the same time the smallest changes throw him into a whirlwind of screaming and crying and beating his head with his small hands.
I don't know what to do. This little boy is tearing our family to pieces, and none of it...NONE of it, is his fault. We march to the beat he devises - there is no other way. It is tiresome in the extreme to feel that autism dictates how our days and weeks and years will go. But it does. Everything must be sifted through the sieve of that detestable disease. I hate it more than I can possibly express here. I hate what it's doing to my husband - a funny and gentle man whose nerves are often left jangling after a day with Stephen. I hate what it's doing to my older son - the shining star whose bright smile and eyes make any day seem worth living...he has taken to writing in a journal, which is healthy, but still makes me sad for him. This isn't the life I had planned for him. And I hate what this is doing to me.
After a really bad afternoon, I asked my mom to take Stephen for the night, and she agreed. I feel bruised and numb, and already worried about what will happen when he comes home. It's that constant feeling of being on alert that is so exhausting.
So what does the future hold? It seems fraught with impossibilities. Put Stephen in a "home" of some sort? I cannot entertain that notion even vaguely. Medicate him more? Maybe. But we need guidance - which seems to be in scarce supply. How do we hold our family together under this kind of stress? I wish that I knew.
Friday, June 13, 2008
Lessons learned from an unlikely teacher
I spent this evening watching the constant media coverage about the death of Tim Russert. I also spent what initially seemed like an inordinate amount of time crying. It only took me a few minutes to realize why the death of someone I had never met had affected me so deeply.
As I listened to Tim’s colleagues and friends eulogize him, a very clear picture began to develop. Here was a man who lived fully and well, doing a job he loved with passion and integrity. Here was a devoted husband, a committed and responsible father, and a tender and compassionate son.
I cried when I saw pictures of him standing with his lovely wife, beaming as he put his arm around his son, laughing and joking with his father. I cried because his is a life cut short, a life that meant so much to so many people…perhaps most importantly, to Russert himself.
His dad was a garbage man in
I watched as one after another, intelligent and respected journalists paid tribute to Tim - words tripping over each other as they tried to explain what kind of person this man was. I was struck by the impact he made in the world of politics, but more importantly, the impact he made in the lives of people - both those he knew personally and loved, and those for whom he made “Meet the Press” relevant and accessible. In his own words, he was “grounded” and knew who he was. How many of us can say that and mean it? He taught his son that they were blessed, but never entitled to anything in this world. How many people do you know who live in the opposite fashion, grasping at immediate rewards and living as if life owes them?
I wish I could thank Tim Russert for reminding me that life can be lived joyfully, with intent, purpose, and abiding love - for one’s self, for family, for friends, for humanity. As we go through days colored with worry, doubt, struggle, illness, autism…there is no higher goal than the one of living - really living - with love, with appreciation for the good we have been given, determination to overcome the bad, and choosing (for it IS a choice) to find joy in unlikely places.
According to Tim’s colleagues, he was generous with information that might help them perform their jobs more impressively, often calling them with an idea, or a tip…and he always ended the conversation in the same way. I’d like to borrow that phrase to encourage anyone reading this (including myself) to really think about life and all the opportunities that exist if we look hard enough.
“Now go out there and GET ‘em!”
Tuesday, May 27, 2008
Down in a hole
All that stuff I've said about things being good and that I know we're going to continue to see progress? Forget it all. Throw it away. Today, at least, those sentiments are foreign to me.
Summer's here, and the living is so damn hard. Who would've ever thought that the time of year that's supposed to be so carefree could feel so suffocating and terrifying?
The boys got out of school last Thursday. My mom volunteered (yay!) to keep Stephen that night, and we were able to take Kerry and his friend to see the new Indy movie after school that day. Then we went out to eat and had a relaxing meal for a change. I had to work the next day, but Stephen did fine at my mom's house. We met the two of them for dinner Friday night, and Stephen behaved very, very well, especially considering we were at Cracker Barrel surrounded by a cacophony of voices and clinking dishes, and all the visual stimulation of that crap they put on every inch of wall space. We made a quick trip to Wal-Mart after that, and breezed in and out without incident. We thought that things were off to a great start for summer.
But we're stupid that way.
Saturday morning went pretty well. Stephen spent some time on the computer and then played in his room. After lunch I dropped Kerry off at a birthday party and came home to find Stephen sitting in the living room floor with a lap full of Thomas DVDs we had hidden in the very back of the entertainment center. My only conscious thought? Oh, shit.
He had already moved the plastic covering we keep over the DVD player and had a disc loaded up and playing. For the next several hours, he reveled in his discovery, having us switch out discs over and over. He refused to leave the room. He wouldn't let anyone sit on the couch with him. He protested loudly if I tried to gather up the discs. We berated ourselves for not moving the DVDs long ago. As David put it, "The genie's out of the bottle now." And it was. He wouldn't part with them, not even for a minute.
After getting Kerry from the party, I decided to take the boys to the pool for the first time this season. At least it would get Stephen away from the TV, right? Kerry and I got dressed, and I went to Stephen, holding his swimsuit and the sunscreen. "Stephen? Wanna go swim?" He looked at me, sized up the situation instantly, and a huge smile broke out on his face. We got ready to go about 4:15 and spent a couple of hours at the pool (with all the IDIOTS who live in our complex...oy). Stephen did great, as always. He loves the water and would live in the pool if he could. But, he got out and went home without a problem. The rest of the night passed easily enough - we went and grabbed a burger, came home, and so forth.
Sunday morning, he was up at about 8:00 a.m. I didn't have too much trouble with him at first. But right about 9:30 or so, he came to me, smiling. "Sweet?" I thought, "Awww..."
"Yes, baby. You're Mama's sweet boy."
"Sweet?"
"Yes!"
But he was agitated. "SWEET! Sweet!"
Hang on. Something's not right. Finally it dawned on me. He was saying "swim" in the best way he could approximate.
Well, I thought, I'll handle it like we did last summer. "No, buddy. Not right now. Later."
That didn't work. God, did it not work. For the next three hours he cried, tantrumed, fought, kicked, slapped and screamed. I spent every single minute of those hours trying to distract him and placate him, only to be shoved and pushed and slapped. Hard. His very rudimentary reasoning ability flew out the window. He didn't accept "later." He wanted to swim and he wanted it RIGHT THEN.
I cannot really put into words how I felt during those hours. Frustrated, of course, but it's more than that. The combination of the DVD discovery and the issues related to that, combined with his total lack of understanding about the swimming issue made me feel as if a balloon was slowly expanding inside my head. I could feel the pressure building and building, and at one point I told myself to just sit tight and wait for the explosion. I thought/prayed/hoped for help. From somewhere. Somehow. "God, if you're there, this would be a FANTASTIC time for some miracle action." Would you believe nothing happened? Maybe I'm not living a good enough life, huh? I don't deserve that. Whatever.
As I watched myself from a distance, struggling and fighting with this child of mine, I detached a part of my psyche. That part sat coldly watching, clinically observing the pain and chaos, "She's not going to last much longer." It was about at that point I gave up.
"Fine. Let's just go." It was 12:45 p.m.
I coated all of us with sunscreen. I re-applied it three times. I tried to have fun with my kids. I tried to "make the best of it." Maybe they had fun - at least Kerry had a friend that was already out there, and they played together. Stephen just did his thing. Mostly, I sat there.
Despite my careful reapplications of sunscreen, we all got sunburned anyway, being out in the most fiercely hot part of the day. Kerry and I got the worst of it. Typical.
We went home after nearly three hours, got cleaned up, and I took Stephen with me to get groceries. He did okay - especially since we went by McDonald's. Again. We went home, and he ate while I put the food away. I fixed dinner for the rest of us, and the evening passed.
He got up at 4:00 a.m. yesterday morning. He played and watched videos, and I dozed on the couch. Not too bad, considering. He started asking to swim but I firmly said, "No." He fussed, but Kerry and I stayed out of his way, and he got over it fairly easily. He got on the computer for a while, and watched some movies after that. We planned to go to my parents' house in the afternoon and then we were going to meet my aunt for dinner later. I kept telling Stephen that we were going to Mamaw's house, and he would counter with "Fries, burger, Donalds, hungry," which is the McDonald's litany. I kept insisting, "First, Mamaw's. Then, McDonald's." I said that a dozen times on the way down.
Except that didn't work either. We got to my mom's, he tantrumed for 30 minutes, I struggled with him, and finally David had to go ahead and take him to McDonald's, and then stayed with him at the house while the rest of us went to eat. Splitting the family up. Again. Because of Stephen and his rigid routines. Don't get me wrong - oftentimes we can outlast him, and he'll get over it, and we can go on. But sometimes, his issues are too strong, and he cannot handle them, and consequently neither can we.
When David left to take Stephen to get his fix, I walked out the front door of my parents' house, and kept walking. It was muggy and hot, but I had to escape. My mom was fretting, as usual, and saying, "Well, maybe we should just cancel everything." I love her, but a tower of strength she is not. I walked and walked, on the roads that I know so well. I used to ride my bike on those streets. I could see my old purple bike in my mind, and my feet automatically followed the paths I used to ride. I ended up at an old cemetery, where there's a small bench under some trees. I was drawn there, and sat. Just sat there, re-living days from 25 years ago, wondering how in God's name I ended up where I am. I could've sat there for days without moving, just letting my mind take me away. But I know my mother, and I knew she was doing more fretting, and would likely call in the National Guard if I was gone too long. I walked back to the house, and by then David and Stephen were back, and Stephen was Stephen again. And I was still the cold shell of a person I had become over the last two days.
Dinner with my aunt was a hollow affair. She is old, and can't hear much of anything. We spent most of the time repeating ourselves. The food was mediocre, and most of it stuck in my throat like glue. We went home, and I stole a few more moments of relative quiet on the front porch, indulging in more mental time-travel. I think I counted three interruptions - my dad and his computer issues, my mom and her neuroses, and I think my sweet Kerry asked me a question. After every one of those instances, I went right back out there, and sunk into the pool of memory until the sun set and it was time to get home. I didn't want to risk Stephen falling asleep in the car on the way back.
We drove home, and I sat beside Stephen in the backseat. He touched my face, my arms...laughing and giggling and turning to rest his head on my shoulder. It occurred to me at some point that he does those things because it feels good to him. There is little, if any, real affection focused on me in those touches. I'm not saying he doesn't have affection for me, but it feels like he's doing those things because it's fun for him. The dichotomy that exists between that Stephen, and the one who wails and hits and slaps, is too much for that fragile and ever-expanding balloon in my head to handle.
Anyway.
We got home and Stephen got settled in his room. I got him changed just in time for him to fall asleep at about 9:30. Early, for him. I did a little work on some schedule cards for him to use this summer, and I turned in about an hour later. I went to sleep with the minor assurance that at least he'd sleep well, having gotten up so early and having had a traumatic afternoon.
Just to make things interesting, he got up at 2:30 this morning. His bed was wet, of course. I dealt with those issues, and went to the couch as usual. I couldn't sleep though. I didn't even cry...well, a few pitiful tears that aren't worth mentioning. I laid there in the dark, my sunburn stinging and my heart a block of ice, heavy in my chest. Every breath I took burned, and I half expected to see my breath when I exhaled. Everything was frozen and black and icy. Stephen came to me and sat beside me, his little hands touching my face. I had to fight to keep from pushing them away. It was like I couldn't stand for him to do that. The balloon was threatening to expand, and I just couldn't stand it... He brought me to his room, and said, very plainly, "A Big Day for Thomas. Watch." I fished around in the cabinet and found that tape. I held it up to make sure it was the one he wanted. Usually I'll say, "This?" and he'll say, "This." But this time, that tiny index finger came up, and he painstakingly read, "A Big...Big...A Big Day For Thomas," and looked at me. My heart gave a half-hearted thump, but it didn't melt. Part of me was touched, certainly, at his efforts - but again...trying to reconcile this angel-faced child with the snarling creature I have encountered in the last few days is nearly impossible. There's that detachment again. From a distance I'm proud of him, but at that moment I am made of steel, and immune to his precious behavior.
I hate that.
My mom has the boys today, and she has called me twice already to say that "everybody's doing fine." I'm glad, certainly. But mainly I'm glad I'm here, and not there.
Life goes on, as the alternative is unacceptable. But I'm in that deep, dark hole right now. I'll crawl out when I'm ready. I think.
Summer's here, and the living is so damn hard. Who would've ever thought that the time of year that's supposed to be so carefree could feel so suffocating and terrifying?
The boys got out of school last Thursday. My mom volunteered (yay!) to keep Stephen that night, and we were able to take Kerry and his friend to see the new Indy movie after school that day. Then we went out to eat and had a relaxing meal for a change. I had to work the next day, but Stephen did fine at my mom's house. We met the two of them for dinner Friday night, and Stephen behaved very, very well, especially considering we were at Cracker Barrel surrounded by a cacophony of voices and clinking dishes, and all the visual stimulation of that crap they put on every inch of wall space. We made a quick trip to Wal-Mart after that, and breezed in and out without incident. We thought that things were off to a great start for summer.
But we're stupid that way.
Saturday morning went pretty well. Stephen spent some time on the computer and then played in his room. After lunch I dropped Kerry off at a birthday party and came home to find Stephen sitting in the living room floor with a lap full of Thomas DVDs we had hidden in the very back of the entertainment center. My only conscious thought? Oh, shit.
He had already moved the plastic covering we keep over the DVD player and had a disc loaded up and playing. For the next several hours, he reveled in his discovery, having us switch out discs over and over. He refused to leave the room. He wouldn't let anyone sit on the couch with him. He protested loudly if I tried to gather up the discs. We berated ourselves for not moving the DVDs long ago. As David put it, "The genie's out of the bottle now." And it was. He wouldn't part with them, not even for a minute.
After getting Kerry from the party, I decided to take the boys to the pool for the first time this season. At least it would get Stephen away from the TV, right? Kerry and I got dressed, and I went to Stephen, holding his swimsuit and the sunscreen. "Stephen? Wanna go swim?" He looked at me, sized up the situation instantly, and a huge smile broke out on his face. We got ready to go about 4:15 and spent a couple of hours at the pool (with all the IDIOTS who live in our complex...oy). Stephen did great, as always. He loves the water and would live in the pool if he could. But, he got out and went home without a problem. The rest of the night passed easily enough - we went and grabbed a burger, came home, and so forth.
Sunday morning, he was up at about 8:00 a.m. I didn't have too much trouble with him at first. But right about 9:30 or so, he came to me, smiling. "Sweet?" I thought, "Awww..."
"Yes, baby. You're Mama's sweet boy."
"Sweet?"
"Yes!"
But he was agitated. "SWEET! Sweet!"
Hang on. Something's not right. Finally it dawned on me. He was saying "swim" in the best way he could approximate.
Well, I thought, I'll handle it like we did last summer. "No, buddy. Not right now. Later."
That didn't work. God, did it not work. For the next three hours he cried, tantrumed, fought, kicked, slapped and screamed. I spent every single minute of those hours trying to distract him and placate him, only to be shoved and pushed and slapped. Hard. His very rudimentary reasoning ability flew out the window. He didn't accept "later." He wanted to swim and he wanted it RIGHT THEN.
I cannot really put into words how I felt during those hours. Frustrated, of course, but it's more than that. The combination of the DVD discovery and the issues related to that, combined with his total lack of understanding about the swimming issue made me feel as if a balloon was slowly expanding inside my head. I could feel the pressure building and building, and at one point I told myself to just sit tight and wait for the explosion. I thought/prayed/hoped for help. From somewhere. Somehow. "God, if you're there, this would be a FANTASTIC time for some miracle action." Would you believe nothing happened? Maybe I'm not living a good enough life, huh? I don't deserve that. Whatever.
As I watched myself from a distance, struggling and fighting with this child of mine, I detached a part of my psyche. That part sat coldly watching, clinically observing the pain and chaos, "She's not going to last much longer." It was about at that point I gave up.
"Fine. Let's just go." It was 12:45 p.m.
I coated all of us with sunscreen. I re-applied it three times. I tried to have fun with my kids. I tried to "make the best of it." Maybe they had fun - at least Kerry had a friend that was already out there, and they played together. Stephen just did his thing. Mostly, I sat there.
Despite my careful reapplications of sunscreen, we all got sunburned anyway, being out in the most fiercely hot part of the day. Kerry and I got the worst of it. Typical.
We went home after nearly three hours, got cleaned up, and I took Stephen with me to get groceries. He did okay - especially since we went by McDonald's. Again. We went home, and he ate while I put the food away. I fixed dinner for the rest of us, and the evening passed.
He got up at 4:00 a.m. yesterday morning. He played and watched videos, and I dozed on the couch. Not too bad, considering. He started asking to swim but I firmly said, "No." He fussed, but Kerry and I stayed out of his way, and he got over it fairly easily. He got on the computer for a while, and watched some movies after that. We planned to go to my parents' house in the afternoon and then we were going to meet my aunt for dinner later. I kept telling Stephen that we were going to Mamaw's house, and he would counter with "Fries, burger, Donalds, hungry," which is the McDonald's litany. I kept insisting, "First, Mamaw's. Then, McDonald's." I said that a dozen times on the way down.
Except that didn't work either. We got to my mom's, he tantrumed for 30 minutes, I struggled with him, and finally David had to go ahead and take him to McDonald's, and then stayed with him at the house while the rest of us went to eat. Splitting the family up. Again. Because of Stephen and his rigid routines. Don't get me wrong - oftentimes we can outlast him, and he'll get over it, and we can go on. But sometimes, his issues are too strong, and he cannot handle them, and consequently neither can we.
When David left to take Stephen to get his fix, I walked out the front door of my parents' house, and kept walking. It was muggy and hot, but I had to escape. My mom was fretting, as usual, and saying, "Well, maybe we should just cancel everything." I love her, but a tower of strength she is not. I walked and walked, on the roads that I know so well. I used to ride my bike on those streets. I could see my old purple bike in my mind, and my feet automatically followed the paths I used to ride. I ended up at an old cemetery, where there's a small bench under some trees. I was drawn there, and sat. Just sat there, re-living days from 25 years ago, wondering how in God's name I ended up where I am. I could've sat there for days without moving, just letting my mind take me away. But I know my mother, and I knew she was doing more fretting, and would likely call in the National Guard if I was gone too long. I walked back to the house, and by then David and Stephen were back, and Stephen was Stephen again. And I was still the cold shell of a person I had become over the last two days.
Dinner with my aunt was a hollow affair. She is old, and can't hear much of anything. We spent most of the time repeating ourselves. The food was mediocre, and most of it stuck in my throat like glue. We went home, and I stole a few more moments of relative quiet on the front porch, indulging in more mental time-travel. I think I counted three interruptions - my dad and his computer issues, my mom and her neuroses, and I think my sweet Kerry asked me a question. After every one of those instances, I went right back out there, and sunk into the pool of memory until the sun set and it was time to get home. I didn't want to risk Stephen falling asleep in the car on the way back.
We drove home, and I sat beside Stephen in the backseat. He touched my face, my arms...laughing and giggling and turning to rest his head on my shoulder. It occurred to me at some point that he does those things because it feels good to him. There is little, if any, real affection focused on me in those touches. I'm not saying he doesn't have affection for me, but it feels like he's doing those things because it's fun for him. The dichotomy that exists between that Stephen, and the one who wails and hits and slaps, is too much for that fragile and ever-expanding balloon in my head to handle.
Anyway.
We got home and Stephen got settled in his room. I got him changed just in time for him to fall asleep at about 9:30. Early, for him. I did a little work on some schedule cards for him to use this summer, and I turned in about an hour later. I went to sleep with the minor assurance that at least he'd sleep well, having gotten up so early and having had a traumatic afternoon.
Just to make things interesting, he got up at 2:30 this morning. His bed was wet, of course. I dealt with those issues, and went to the couch as usual. I couldn't sleep though. I didn't even cry...well, a few pitiful tears that aren't worth mentioning. I laid there in the dark, my sunburn stinging and my heart a block of ice, heavy in my chest. Every breath I took burned, and I half expected to see my breath when I exhaled. Everything was frozen and black and icy. Stephen came to me and sat beside me, his little hands touching my face. I had to fight to keep from pushing them away. It was like I couldn't stand for him to do that. The balloon was threatening to expand, and I just couldn't stand it... He brought me to his room, and said, very plainly, "A Big Day for Thomas. Watch." I fished around in the cabinet and found that tape. I held it up to make sure it was the one he wanted. Usually I'll say, "This?" and he'll say, "This." But this time, that tiny index finger came up, and he painstakingly read, "A Big...Big...A Big Day For Thomas," and looked at me. My heart gave a half-hearted thump, but it didn't melt. Part of me was touched, certainly, at his efforts - but again...trying to reconcile this angel-faced child with the snarling creature I have encountered in the last few days is nearly impossible. There's that detachment again. From a distance I'm proud of him, but at that moment I am made of steel, and immune to his precious behavior.
I hate that.
My mom has the boys today, and she has called me twice already to say that "everybody's doing fine." I'm glad, certainly. But mainly I'm glad I'm here, and not there.
Life goes on, as the alternative is unacceptable. But I'm in that deep, dark hole right now. I'll crawl out when I'm ready. I think.
Thursday, May 22, 2008
Children growing up...
This mother's heart is full today - bittersweet memories mixed with pride and great love. Today is Stephen's last day at his elementary school. For five years, I have taken him there most every morning during the school year, and it was very emotional to drive up and walk with him into the building for the last time.
I can clearly see him as a tiny little three-year-old, toddling along down the hall - or, being pushed, pulled, and dragged, screaming... We had lots of mornings like that. I can remember having to PEEL his clinging little hands away from my legs and walking away as fast as I could, tears blinding my vision - hoping against hope that he'd calm down and have a good day. In retrospect, those preschool years were every bit as important as his last couple of years, though...he learned about spending the day in a classroom, and he learned to pay attention to the children that surrounded him. It took a while for him to come out of his own world, but he surely has.
So while there is still the very rare morning that he balks about leaving home to go to school, he has grown to love being there, and he has blossomed and grown and learned SO much - more than I once thought possible. He no longer has to be taken in to a special side entrance. Over a year ago I started parking and walking him to the main door where all the other kids enter. He adapted beautifully and learned to walk along with the stream of children, smiling and occasionally reaching out to touch their little faces. This morning I hung back and watched him...ears covered as is his custom, he walked down the sidewalk and headed into the building...and I was overcome with emotion. That walk signifies so much.
So today a chapter ends. Five years of struggles and worries and advocacy have given rise to the sweet, smart, outgoing little boy we are so proud of today. He has such a journey ahead of him, but those strong little legs have already traveled such a long, long way. I worry about all the changes we face as he transitions to a new school...but we'll make it. He's proven that he can do it.
The boy who wouldn't hold a marker in his hand a few years ago wrote his name independently on the sign-in board this morning. He smiled a little smile when we praised him, then came up to me.
"Bye buddy...I love you."
"...Vvvv you... Good-bye!" said very firmly, as always. It's time for you to go, Mom. I'm at school!
I love you, baby.
I can clearly see him as a tiny little three-year-old, toddling along down the hall - or, being pushed, pulled, and dragged, screaming... We had lots of mornings like that. I can remember having to PEEL his clinging little hands away from my legs and walking away as fast as I could, tears blinding my vision - hoping against hope that he'd calm down and have a good day. In retrospect, those preschool years were every bit as important as his last couple of years, though...he learned about spending the day in a classroom, and he learned to pay attention to the children that surrounded him. It took a while for him to come out of his own world, but he surely has.
So while there is still the very rare morning that he balks about leaving home to go to school, he has grown to love being there, and he has blossomed and grown and learned SO much - more than I once thought possible. He no longer has to be taken in to a special side entrance. Over a year ago I started parking and walking him to the main door where all the other kids enter. He adapted beautifully and learned to walk along with the stream of children, smiling and occasionally reaching out to touch their little faces. This morning I hung back and watched him...ears covered as is his custom, he walked down the sidewalk and headed into the building...and I was overcome with emotion. That walk signifies so much.
So today a chapter ends. Five years of struggles and worries and advocacy have given rise to the sweet, smart, outgoing little boy we are so proud of today. He has such a journey ahead of him, but those strong little legs have already traveled such a long, long way. I worry about all the changes we face as he transitions to a new school...but we'll make it. He's proven that he can do it.
The boy who wouldn't hold a marker in his hand a few years ago wrote his name independently on the sign-in board this morning. He smiled a little smile when we praised him, then came up to me.
"Bye buddy...I love you."
"...Vvvv you... Good-bye!" said very firmly, as always. It's time for you to go, Mom. I'm at school!
I love you, baby.
Thursday, April 24, 2008
Beautiful Boy
What a strange and beautiful son I have...
Last night Stephen fell asleep clinging to the foot of his bed. I went in to rotate him around to the head-on-pillow position, but first I had to remove the stuffed animal menagerie piled up in the center of his bed (leaving him a one foot space in which to fall asleep). As I moved the twenty-five or so assorted animals to their basket, I noticed that he had also placed some Thomas trains, plastic and wooden, in the mix...as well as about 30 pieces of wooden track. I moved those to their respective boxes, along with two plastic Slinky's, a Bob the Builder ball, a golf ball, and, inexplicably, an extra pillowcase.
I paused to look at the (finally) still, quiet form of my little boy, his face relaxed and peaceful. He looks so normal when he's asleep - there's no hint of a problem or a disorder. Just a handsome, healthy-looking child, lost in dreams and slumber.
And my gaze wandered to the pile of objects on his table...why a golf ball and Slinky's? The pillowcase? You can imagine that any child might like to snuggle with stuffed animals at bedtime, and Stephen is no different in that respect. But the other stuff...this odd, quirky collection of items that he obviously finds important...what's that about?
In my mind's eye I see him, realizing that he's getting tired, moving around his room to gather up the things that hold meaning for him - his choices aren't clear to me, but they are to him. He is a real little person, with likes and (STRONG) dislikes, and I find myself feeling glad that he is comfortable and has a place to just be Stephen. Isn't that a lesson we all need to remember? Sure, it may look a little weird sometimes, but laugh and enjoy and be who you are, every day. Stephen knows this, and practices it with great style.
Sometimes, though, this strange and lovely son of ours throws us a curve ball.
Much to our dismay, last Friday was haircut day. To give a bit of history: I've mentioned before how bad haircuts have been for the last 6 years or so. We're talking serious levels of trauma for everyone involved. We used to have a friend of the family cut his hair in a regular little-boy-style scissor cut. I would hold him in my lap and she would cut here and there, as best she could, while I fought with him. He would scream and cry and sweat and struggle...it was difficult in an epic way. After the cut I would literally be unable to lift my arms to write a check to pay for it. As Stephen grew, David got involved, holding his arms and head while I held the rest of him.
People would oh so helpfully tell us just to "shave his head." Well, I just couldn't stomach the idea of my precious baby-faced boy looking like a convict (that was my unfortunate mental picture). I didn't want to force that on him and make him look funny. So we persevered.
About a year or more ago, David was at the barbershop and saw two young boys getting "clipper cuts" with slightly longer bangs left at the front. He assured me that it looked really cute, and, even more importantly, it was FAST! So we decided to give it a try and took Stephen there. It was still monumentally difficult, mind you...still a struggle and a fight, and we all felt like wrung-out dishcloths by the end. But the end came more quickly, so we decided that this was the way to go. Plus, the kid looked damned cute, to boot.
Fast-forward to last Friday...I had worked up what's called a "social story" about going to the barbershop. I used a simple narrative: "Stephen's going to get a haircut today..." and so forth, and inserted photographs of Stephen, a typical barbershop interior, a barber chair, clippers ("that make a BUZZZZZZZing noise, but they won't hurt Stephen"), then a bathtub, and finally, the pièce de résistance, a picture of McDonalds. I didn't have a whole lot of faith that this story would work, but Stephen's come so far in communicating that I thought it was worth a try.
So as we got him ready to leave home, as he always does when we make preparations to GO someplace, he immediately started asking for "fries/burger." This gave me an opening to start showing him the story. "First haircut, then McDonalds." I repeated this over and over and over, and began flipping the pages of his book, and mimicking the feel and sound of the clippers on his head. He giggled and parroted back, "Bah-bah-shop. Kip-pers." But I wasn't buying it...
We got in the car, and I continued to read him the story while David drove and Kerry sat in the front seat reading. We drove to the town I grew up in (where the wonderful lady who helps us with this has her shop) and Stephen was SO loving and happy that I knew he hadn't absorbed my story. With a sinking feeling I accepted his kisses and hugs, the whole time knowing what a 180° turn we were going to experience when we arrived.
We got to the shop, and Stephen began to whine a little. "Come on, buddy. Time for haircut."
"No."
"We have to..." and we haul him out of the car.
"NO."
We got into the shop and I pulled out his book. "See, buddy? Barbershop. We get haircut here."
David went and sat in the chair, as usual, and I led Stephen over. I could immediately sense a difference. He was walking calmly, without pulling back on my hand. I helped him climb into his daddy's lap, and we wrapped a sheet around him. Ms. Tommie showed him the clippers, and turned them on, away from his head. He looked carefully at them. As she took the first pass through his hair, my little boy looked at me with his moss-green eyes, and said, very quietly, "Buzzzzz?"
My eyes were already misting over as I said, "Yes, baby. Buzzzz!"
From that moment on, other than typical "oooh, that tickles" flinching, Stephen sat calmly in his dad's lap, letting his hair be cut. Throughout the whole haircut, the three adults kept exchanging glances...we were afraid to breathe lest he fall apart. But he didn't...he watched himself in the mirror, he talked about Thomas and Gordon and Duck...and he never fought, never struggled, never shed a tear.
His dad and I, on the other hand, shed quite a few. I don't know that I've ever smiled so much...and been so overwhelmed by thankfulness. Instead of the trauma we'd been expecting, (both David and I were nauseous all day dreading the afternoon) we were rejoicing. We were absolutely thrilled with him, and with the amazing knowledge that he had definitely understood all the pre-emptive planning and explaining. He obviously didn't WANT to get it cut (hence the strong "No's") but he sat through it as any boy would've.
Miracle? I don't know. A triumph? Most certainly. For perhaps the first time, Stephen understood what was going to happen because he could follow the story visually beforehand. Even though I didn't realize it, he took in what I said, and was able to mentally prepare himself. Did he really have sensory issues with haircuts, as we'd previously assumed, or was it just unfamiliar and frightening because he didn't GET what was about to happen?
Either way, it was a eureka! moment, a red-letter day, the first observance of "Stephen Got a Haircut and Nobody Got Injured Day" - and we look forward to celebrating it again in 4 months or so. Hopefully. :-)
Here's our little prince...
Oh, and he got extra french fries that day.
Last night Stephen fell asleep clinging to the foot of his bed. I went in to rotate him around to the head-on-pillow position, but first I had to remove the stuffed animal menagerie piled up in the center of his bed (leaving him a one foot space in which to fall asleep). As I moved the twenty-five or so assorted animals to their basket, I noticed that he had also placed some Thomas trains, plastic and wooden, in the mix...as well as about 30 pieces of wooden track. I moved those to their respective boxes, along with two plastic Slinky's, a Bob the Builder ball, a golf ball, and, inexplicably, an extra pillowcase.
I paused to look at the (finally) still, quiet form of my little boy, his face relaxed and peaceful. He looks so normal when he's asleep - there's no hint of a problem or a disorder. Just a handsome, healthy-looking child, lost in dreams and slumber.
And my gaze wandered to the pile of objects on his table...why a golf ball and Slinky's? The pillowcase? You can imagine that any child might like to snuggle with stuffed animals at bedtime, and Stephen is no different in that respect. But the other stuff...this odd, quirky collection of items that he obviously finds important...what's that about?
In my mind's eye I see him, realizing that he's getting tired, moving around his room to gather up the things that hold meaning for him - his choices aren't clear to me, but they are to him. He is a real little person, with likes and (STRONG) dislikes, and I find myself feeling glad that he is comfortable and has a place to just be Stephen. Isn't that a lesson we all need to remember? Sure, it may look a little weird sometimes, but laugh and enjoy and be who you are, every day. Stephen knows this, and practices it with great style.
Sometimes, though, this strange and lovely son of ours throws us a curve ball.
Much to our dismay, last Friday was haircut day.
People would oh so helpfully tell us just to "shave his head." Well, I just couldn't stomach the idea of my precious baby-faced boy looking like a convict (that was my unfortunate mental picture). I didn't want to force that on him and make him look funny. So we persevered.
About a year or more ago, David was at the barbershop and saw two young boys getting "clipper cuts" with slightly longer bangs left at the front. He assured me that it looked really cute, and, even more importantly, it was FAST! So we decided to give it a try and took Stephen there. It was still monumentally difficult, mind you...still a struggle and a fight, and we all felt like wrung-out dishcloths by the end. But the end came more quickly, so we decided that this was the way to go. Plus, the kid looked damned cute, to boot.
Fast-forward to last Friday...I had worked up what's called a "social story" about going to the barbershop. I used a simple narrative: "Stephen's going to get a haircut today..." and so forth, and inserted photographs of Stephen, a typical barbershop interior, a barber chair, clippers ("that make a BUZZZZZZZing noise, but they won't hurt Stephen"), then a bathtub, and finally, the
So as we got him ready to leave home, as he always does when we make preparations to GO someplace, he immediately
We got in the car, and I continued to read him the story while David drove and Kerry sat in the front seat reading. We drove to the town I grew up in (where the wonderful lady who helps us with this has her shop) and Stephen was SO loving and happy that I knew he hadn't absorbed my story. With a sinking feeling I accepted his kisses and hugs, the whole time knowing what a 180° turn we were going to experience when we arrived.
We got to the shop, and Stephen began to whine a little. "Come on, buddy. Time for haircut."
"No."
"We have to..." and we haul him out of the car.
"NO."
We got into the shop and I pulled out his book. "See, buddy? Barbershop. We get haircut here."
David went and sat in the chair, as usual, and I led Stephen over. I could immediately sense a difference. He was walking calmly, without pulling back on my hand. I helped him climb into his daddy's lap, and we wrapped a sheet around him. Ms. Tommie showed him the clippers, and turned them on, away from his head. He looked carefully at them. As she took the first pass through his hair, my little boy looked at me with his moss-green eyes, and said, very quietly, "Buzzzzz?"
My eyes were already misting over as I said, "Yes, baby. Buzzzz!"
From that moment on, other than typical "oooh, that tickles" flinching, Stephen sat calmly in his dad's lap, letting his hair be cut. Throughout the whole haircut, the three adults kept exchanging glances...we were afraid to breathe lest he fall apart. But he didn't...he watched himself in the mirror, he talked about Thomas and Gordon and Duck...and he never fought, never struggled, never shed a tear.
His dad and I, on the other hand, shed quite a few. I don't know that I've ever smiled so much...and been so overwhelmed by thankfulness. Instead of the trauma we'd been expecting, (both David and I were nauseous all day dreading the afternoon) we were rejoicing. We were absolutely thrilled with him, and with the amazing knowledge that he had definitely understood all the pre-emptive planning and explaining. He obviously didn't WANT to get it cut (hence the strong "No's") but he sat through it as any boy would've.
Miracle? I don't know. A triumph? Most certainly. For perhaps the first time, Stephen understood what was going to happen because he could follow the story visually beforehand. Even though I didn't realize it, he took in what I said, and was able to mentally prepare himself. Did he really have sensory issues with haircuts, as we'd previously assumed, or was it just unfamiliar and frightening because he didn't GET what was about to happen?
Either way, it was a eureka! moment, a red-letter day, the first observance of "Stephen Got a Haircut and Nobody Got Injured Day" - and we look forward to celebrating it again in 4 months or so. Hopefully. :-)
Here's our little prince...
Oh, and he got extra french fries that day.
Tuesday, April 15, 2008
Building a mystery
It's 9:05 a.m. and I am exhausted. I feel like I have run a marathon while simultaneously being beaten by a stick and juggling Ginsu knives.
Stephen woke up in a decent mood. "Time to get dressed for school!" I chirruped in what must be an annoyingly cheerful tone.
"No." A good solid answer. Not the one I was hoping for, but I can work with this.
"Yes, buddy! Time for school!" (he's not buying this)
"No!" And so the fight ensues. "Thomas and James compuuuuuu."
"No, time for school," still with a smile.
"Juggle Book...watch."
"Time for school," delivered through slightly clenched teeth.
We got him dressed, and he ran off to his room. David went in to try to cheer him up while I got his shoes. He let us get his shoes on deceptively easily...only to pull one off as soon as I got the velcro fastened.
Argh.
How can he do SO well most days and be a disagreeable grump on days like today? Well...I guess everybody has bad days, but Stephen's are so unpredictable, and he can't say, "I wish I could just stay home today," like Kerry occasionally says.
So, Stephen refused to put on his backpack, refused to walk down the hall without prodding, and then flatly refused to go out the door. He laid on the floor and began pounding his heels. David got him up and out the door. Usually by this point, if he's cranky, he accepts his fate and will sometimes almost magically transform into happy Stephen, having gotten through the transition trauma.
Not today.
I had to drag him down the stairs and into the car. By the time I got his seat belt on, he had both shoes off. Socks were next. He screamed and cried till the car felt like it was going to explode. (Mostly) unscathed I drove determinedly out to the street and started on our way. At the first intersection he grabbed handfuls of my shirt and pulled for all he was worth. When that didn't stop me from driving, he moved to my hair (which is just past my shoulders) and pulled. Hard. It brought tears to my eyes - tears of pain and of pure frustration. So he pulled, I drove, trying to get him untangled without having a wreck. I kept asking, "Stephen, WHAT do you WANT?" He would echo it back in between screams.
Finally I pulled off the road and, for a moment, wanted to keep driving at full speed and ram my car into the building I parked beside. I turned around, and bellowed, "WHAT is WRONG with you?"
["Gee, mom. Maybe I have some sort of bewildering and maddening developmental disorder. Try living inside my head for a day."]
There he sat, red faced and snotty, hair much too long and disheveled, crying. He got my hand and had me push on his chest, which he likes, and then his chin. I just looked at him. Part of me wanted to just turn around and go home. But I can't do that. Ultimately he will benefit so much more from being taken to school...so we pressed on.
We got to school, and fresh tears began flowing. I got his socks and shoes back on, and he didn't want to get out of the car. I summoned up some brute strength and got him out, but he wasn't happy. His aide (bless her) who usually runs the carpool system saw me struggling, handed off her stop sign to someone else and came over to help. She calmly talked to him and he took a few steps. We got him to his room and he signed in as usual. He hugged me and sat down at the computer. He looked at me and said, "Good-bye."
Rather anticlimactic, don't you think?
I don't know why mornings like this happen. Sometimes (MOST times) he is a delight - but when he isn't? God. It's just awful. It's heartwrenching and frustrating and fury-inducing. Not fury directed at a helpless child, but at that THING that lives in his head and takes over his personality at times.
I'm still waiting to hear from his aide. She's supposed to call me and let me know how he's doing. He'll probably be fine, and so we'll keep going, fighting our way through the dark forest, never knowing what mystery lies around the bend.
Stephen woke up in a decent mood. "Time to get dressed for school!" I chirruped in what must be an annoyingly cheerful tone.
"No." A good solid answer. Not the one I was hoping for, but I can work with this.
"Yes, buddy! Time for school!" (he's not buying this)
"No!" And so the fight ensues. "Thomas and James compuuuuuu."
"No, time for school," still with a smile.
"Juggle Book...watch."
"Time for school," delivered through slightly clenched teeth.
We got him dressed, and he ran off to his room. David went in to try to cheer him up while I got his shoes. He let us get his shoes on deceptively easily...only to pull one off as soon as I got the velcro fastened.
Argh.
How can he do SO well most days and be a disagreeable grump on days like today? Well...I guess everybody has bad days, but Stephen's are so unpredictable, and he can't say, "I wish I could just stay home today," like Kerry occasionally says.
So, Stephen refused to put on his backpack, refused to walk down the hall without prodding, and then flatly refused to go out the door. He laid on the floor and began pounding his heels. David got him up and out the door. Usually by this point, if he's cranky, he accepts his fate and will sometimes almost magically transform into happy Stephen, having gotten through the transition trauma.
Not today.
I had to drag him down the stairs and into the car. By the time I got his seat belt on, he had both shoes off. Socks were next. He screamed and cried till the car felt like it was going to explode. (Mostly) unscathed I drove determinedly out to the street and started on our way. At the first intersection he grabbed handfuls of my shirt and pulled for all he was worth. When that didn't stop me from driving, he moved to my hair (which is just past my shoulders) and pulled. Hard. It brought tears to my eyes - tears of pain and of pure frustration. So he pulled, I drove, trying to get him untangled without having a wreck. I kept asking, "Stephen, WHAT do you WANT?" He would echo it back in between screams.
Finally I pulled off the road and, for a moment, wanted to keep driving at full speed and ram my car into the building I parked beside. I turned around, and bellowed, "WHAT is WRONG with you?"
["Gee, mom. Maybe I have some sort of bewildering and maddening developmental disorder. Try living inside my head for a day."]
There he sat, red faced and snotty, hair much too long and disheveled, crying. He got my hand and had me push on his chest, which he likes, and then his chin. I just looked at him. Part of me wanted to just turn around and go home. But I can't do that. Ultimately he will benefit so much more from being taken to school...so we pressed on.
We got to school, and fresh tears began flowing. I got his socks and shoes back on, and he didn't want to get out of the car. I summoned up some brute strength and got him out, but he wasn't happy. His aide (bless her) who usually runs the carpool system saw me struggling, handed off her stop sign to someone else and came over to help. She calmly talked to him and he took a few steps. We got him to his room and he signed in as usual. He hugged me and sat down at the computer. He looked at me and said, "Good-bye."
Rather anticlimactic, don't you think?
I don't know why mornings like this happen. Sometimes (MOST times) he is a delight - but when he isn't? God. It's just awful. It's heartwrenching and frustrating and fury-inducing. Not fury directed at a helpless child, but at that THING that lives in his head and takes over his personality at times.
I'm still waiting to hear from his aide. She's supposed to call me and let me know how he's doing. He'll probably be fine, and so we'll keep going, fighting our way through the dark forest, never knowing what mystery lies around the bend.
Thursday, March 27, 2008
In the wee small hours
Wow. I'm barely squeaking in with a March entry. So much for my weekly writings... It's not that things haven't been happening, going on, etc. - Stephen is doing remarkably well with his new teacher. He's still reading and has progressed to doing addition, which frankly blows my mind. But, for whatever reason, I just didn't feel inspired to write this stuff down. When I'd think about it, I'd feel this weird pressure to "produce," and this blog has never been about that. I figured when or if something needed to be said, I'd know. What follows falls into the "I've got to get this out or I'll lose it" category - nothing earth shattering here, just junk I need to vent.
So here we go.
Stephen and I got up at 2:00 a.m. (for the second time in less than a week). Well, HE got up then. I laid in bed and thought/hoped/prayed he'd just drift back to sleep. Finally, at 2:50, I realized that wasn't going to happen. I got up and checked him - his pajamas were wet, but the sheets were dry (hallelujah) so I got him changed into clean PJ's and headed for the couch.
He came and laid down with me, but only for a minute. Then he was off to his room to turn on the TV for the early morning video-go-round. If you're not familiar, the "video-go-round" is Stephen's preferred method of watching. It's simple. You put in a video, he watches for anywhere from 2 seconds to 15 minutes, then he unplugs everything and brings you another video. Repeat this process approximately 20 times. Now, the kid is charming (mostly) - he's using his words to explain what he wants to see..."Thomas and James...WATCH," for example. It's really cute.
It's not as cute at 4:00 a.m. though.
At around 4:30 he came into the living room where I was fitfully dozing, and said, "Ten Years of Thomas...WATCH," but then he started saying "Off." Now, usually that means he wants lights turned off. But since the room was dark I ascertained that he meant "On." That concept is still not clear to him. Anyway, I said, "No, buddy...it's still nighttime..." which brought on a sit-in on the living room floor, whining at increasingly high volume..."OFF!!!!" Finally, I broke. I mean, what am I supposed to do? Fight the battle and risk waking everybody else in the building up, or give in? I gave in. I marched around in a fury, turning on lamps and cursing under my breath..."He won't even BE in here, why should I do this? I have to do this or he'll freak out. I mean, he'll be in his ROOM for god's sake..." Then I turned to him, standing there in his baseball pajamas, shaggy haired and precious, and I ripped the video out of his hands, snarling. Joan Crawford would've been proud. My son, who cannot help waking up, who was being fairly pleasant, who has god knows what going through his head at any given time recoiled from me with a look of fear on his face. I hated myself just then. I hated what I was allowing to control me. I was just so damned mad at...something. All I wanted was a dark room so I could sleep for 5 minutes in between video changes...but then in that one moment, I was ashamed. I was mean, and there's no excuse.
After he recovered, he toddled down the hall to his room and waited for me to follow him and put in the tape. As I sat cross-legged on the floor, he came to me - no hesitation or fear - put his cold little hands on my face, and turned it gently so he could kiss me. And I thought I couldn't feel any lower...
I went back to the couch in the living room that was lit up like Times Square, and let myself go, just a bit. I needed to...it wasn't a loss of control, or letting my emotions run wild. It was simply acknowledging to myself that, while I strive at all times to be patient and loving, sometimes I'm going to fail. Most kids I know are pretty forgiving, and Stephen seems to be extraordinarily so. Not that he intellectually knows, as Kerry does, that sometimes Mom messes up...but somehow, he understands in his own way that Mama is mostly about love and hugs, not angry looks and frustration.
Soon enough it was 6:00 a.m. and time to get Kerry up so he could get to choir practice by 7:00 a.m. He is a classic sleepyhead, and came dragging in yawning, "I'm so SLEEPY!" Wouldn't you know it? Mommie Dearest reared her ugly head and growled..."Yeah? Well, try getting up at TWO A.M.!!!" with two fingers stabbing the air for emphasis. He peeked out from under the quilt and quietly said, "I'm sorry, Mom."
These kids of mine! They know how to get to me, you know?
I hugged him, apologized for being snappish, and all was well. I thought about staying home from work today, but at some point I shifted into morning mode, and didn't feel sleepy anymore. I'm fresh out of paid time off, so it's just as well that I made it in to work after all.
The sun is shining. It's going to be a rare springlike day here in the deep south. My kids made me proud today - they know I'm human and flawed, and they love me anyway. I can't ask for much more than that.
So here we go.
Stephen and I got up at 2:00 a.m. (for the second time in less than a week). Well, HE got up then. I laid in bed and thought/hoped/prayed he'd just drift back to sleep. Finally, at 2:50, I realized that wasn't going to happen. I got up and checked him - his pajamas were wet, but the sheets were dry (hallelujah) so I got him changed into clean PJ's and headed for the couch.
He came and laid down with me, but only for a minute. Then he was off to his room to turn on the TV for the early morning video-go-round. If you're not familiar, the "video-go-round" is Stephen's preferred method of watching. It's simple. You put in a video, he watches for anywhere from 2 seconds to 15 minutes, then he unplugs everything and brings you another video. Repeat this process approximately 20 times. Now, the kid is charming (mostly) - he's using his words to explain what he wants to see..."Thomas and James...WATCH," for example. It's really cute.
It's not as cute at 4:00 a.m. though.
At around 4:30 he came into the living room where I was fitfully dozing, and said, "Ten Years of Thomas...WATCH," but then he started saying "Off." Now, usually that means he wants lights turned off. But since the room was dark I ascertained that he meant "On." That concept is still not clear to him. Anyway, I said, "No, buddy...it's still nighttime..." which brought on a sit-in on the living room floor, whining at increasingly high volume..."OFF!!!!" Finally, I broke. I mean, what am I supposed to do? Fight the battle and risk waking everybody else in the building up, or give in? I gave in. I marched around in a fury, turning on lamps and cursing under my breath..."He won't even BE in here, why should I do this? I have to do this or he'll freak out. I mean, he'll be in his ROOM for god's sake..." Then I turned to him, standing there in his baseball pajamas, shaggy haired and precious, and I ripped the video out of his hands, snarling. Joan Crawford would've been proud. My son, who cannot help waking up, who was being fairly pleasant, who has god knows what going through his head at any given time recoiled from me with a look of fear on his face. I hated myself just then. I hated what I was allowing to control me. I was just so damned mad at...something. All I wanted was a dark room so I could sleep for 5 minutes in between video changes...but then in that one moment, I was ashamed. I was mean, and there's no excuse.
After he recovered, he toddled down the hall to his room and waited for me to follow him and put in the tape. As I sat cross-legged on the floor, he came to me - no hesitation or fear - put his cold little hands on my face, and turned it gently so he could kiss me. And I thought I couldn't feel any lower...
I went back to the couch in the living room that was lit up like Times Square, and let myself go, just a bit. I needed to...it wasn't a loss of control, or letting my emotions run wild. It was simply acknowledging to myself that, while I strive at all times to be patient and loving, sometimes I'm going to fail. Most kids I know are pretty forgiving, and Stephen seems to be extraordinarily so. Not that he intellectually knows, as Kerry does, that sometimes Mom messes up...but somehow, he understands in his own way that Mama is mostly about love and hugs, not angry looks and frustration.
Soon enough it was 6:00 a.m. and time to get Kerry up so he could get to choir practice by 7:00 a.m. He is a classic sleepyhead, and came dragging in yawning, "I'm so SLEEPY!" Wouldn't you know it? Mommie Dearest reared her ugly head and growled..."Yeah? Well, try getting up at TWO A.M.!!!" with two fingers stabbing the air for emphasis. He peeked out from under the quilt and quietly said, "I'm sorry, Mom."
These kids of mine! They know how to get to me, you know?
I hugged him, apologized for being snappish, and all was well. I thought about staying home from work today, but at some point I shifted into morning mode, and didn't feel sleepy anymore. I'm fresh out of paid time off, so it's just as well that I made it in to work after all.
The sun is shining. It's going to be a rare springlike day here in the deep south. My kids made me proud today - they know I'm human and flawed, and they love me anyway. I can't ask for much more than that.
Thursday, February 28, 2008
The REAL Face of Autism
J-Mac strikes again.
Last night Larry King had another show about autism. To his credit, at least he's TALKING about autism, which is more than most people in show business do. The show was entitled "Autism: Solving the Puzzle." To be honest, my initial thought (especially once I saw that the young man everyone calls "J-Mac" was the featured guest) was...Nope. Not gonna sit through another feel-good show about "autism" - and by "autism" they mean high-functioning verbal kids and/or kids whose parents are mega-rich.
But David said..."C'mon...let's watch it." I agreed, especially since I saw that other guests were involved: Holly Robinson Peete, Toni Braxton, and Doug Flutie - all of whom have sons with varying degrees of autism.
Of course, the footage from Jason McElwain's amazing basketball game two years ago had to be shown, and everyone congratulated him once again. Holly's son, who is 10 years old, had apparently expressed a desire to meet the great J-Mac (who is now 19) - so there was also footage of the Peete family welcoming J-Mac over for a few hoops in the driveway. So far the feel-good meter is off the charts.
Toni Braxton then chimed in, describing how much better her son is. I didn't catch how old her son Diezel is, but she was careful to mention that he is doing very well "because I have been able to get him all the treatments he needs." Yes. Indeed.
Between the fawning over J-Mac and the oozing sweetness of Holly and Toni, I was really starting to wish I had decided to clean the kitchen or fold some clothes instead of watching...but I persisted, rolling my eyes and "hmph-ing" every two seconds.
Let me say this: I recognize that Jason McElwain has struggled. His mom was with him, and she briefly explained that he was rather low functioning as a child. It IS truly amazing that he developed such a command of language, and that he has risen to minor (or major?) stardom because of his miraculous basketball game. Yes, it's wonderful, and I suppose part of me thinks, "Well, maybe Stephen will make huge leaps like that," and of course I would be ecstatic. But once again, the suspender-wearing, guest-interrupting, patronizing-question-asking Larry King is the media ringleader in promoting the inaccurate fact that Jason's autism is all that autism IS. He said, "J-Mac is the face of autism." I was getting my dander up over this, until the next guest finally got a chance to speak.
"Joining us from Boston, the great football legend, Doug Flutie...Doug has a son with autism. Doug, tell us...what has J-Mac done for the autism cause?" Doug looked straight into the camera and said, "Larry, basically, J-Mac has brought awareness to the autism issue...like the Doug Flutie Jr. Foundation has tried to do." Wow. No fawning, no over-doing it with the praise... Now, I'm interested.
Eventually, Larry got around to mentioning that there are various degrees of autism, and then polled his guests to find out about their kids' levels. Of course, J-Mac's mom said, "Now, he's high functioning." Ditto for Holly and Toni (well, Toni said mid-to high). Then it was Doug's turn. "Dougie is very low-functioning. He is 16 now, and he can't feed himself, dress himself, or talk at all." I watched intently as Doug looked straight into the camera, quietly and calmly saying, "Hey, my son can barely function..." and I noticed something - the lines on his face, the fatigue, the sadness in his eyes even as he smiled and told about the joy his son brings to him every day, the wistful hope in his voice, wanting so much for his son to progress. The face of a parent who dies inside when his child struggles to get through a day, the smile that somehow combines happiness with heartbreak, the clenched jaw that is equal parts stubbornness, frustration, and anger...the child who is trapped inside his body, with a brain and a heart and an imagination, the child who is scorned or overlooked because he appears to be dumb, the child who hurts and can't ask for help...these are the faces of autism. I recognize these faces...I see one in the mirror every day, in my husband's face every day, and in BOTH my sons' faces...one wanting his brother to just get better, and the other that faces every day dealing with challenges that I may never truly understand, but with a smile that melts your heart.
There was pretty much no response to Doug Flutie's rather down-to-earth description, so Larry moved the show along. The next question applied to everyone was: "What are your goals for your child?" Well, J-Mac answered on his own. He wants to be an assistant coach, which will be difficult, as his mom explained, with the learning problems he has. Well, more power to him, I say. Holly Robinson Peete's son wants to play basketball like J-Mac. And Toni's son is excited about going to a typical peer's birthday party, and she just wants him to continue to improve. So Larry leans on his hand and intones, "Doug...I suppose Dougie isn't ABLE to tell you his goals..." Such sensitivity. [Michelle to Larry: You MORON.] Doug paused, and said, "Well, no, Larry. He isn't. But our goals for him just involve him learning to function better in his everyday life." Larry, in a patronizing tone: "Well, Doug...do you have HOPE?" [Michelle to Larry: You are an idiot.] And Doug smiled. "Of course we do, Larry. Of course we do."
The rest of Larry King's show was more of the same old banter: What IS autism? Can it be cured? What causes it? At this point Dr. Jerry Kartzinel joined the panel. Dr. Kartzinel is a name you may recognize as the doctor who helped "cure" Jenny McCarthy's son Evan's autism. I believe that Dr. Kartzinel is a good man, and a good doctor - if only every large city had one like him, and if only every family could afford the huge fees he charges. Dr. Kartzinel addressed the "Do vaccines cause autism?" question, and unfortunately allowed the other panelists to engage in a discussion of thimerosal and its suspicious role in this autism thing. That's not to say it didn't ONCE play a part, but it's not the whole story. Thimerosal has been removed from kid's vaccines, and kids are STILL getting autism. Something else is going on here, I have no doubt. Is it merely coincidental that so many kids regress after a big batch of shots? Probably not. Perhaps their immature immune systems can't handle such a toxic load. Toni Braxton actually made that point, and for that I will pardon her for her comment about being able to give her child ALL the treatments he needed.
Dr. Kartzinel pointed out, very appropriately I thought, that the "experts" who continue to insist that autism is purely a genetic disorder cannot account for the epidemic we're seeing. "There is no such thing as a genetic epidemic." Amen, brother. And the good doctor finished up his moments on the show with a profound statement that needs to be absorbed by everyone in this country. When asked if a cure is possible, he said, "There HAS to be. There HAS to be a cure. We cannot keep sacrificing 1 out of every 150 children to this disease." People need to HEAR that, and be driven by fear to DO something.
J-Mac's mom had mentioned several times that he has to "rehearse" for any public speaking he does. He had been coached well, and was very composed and did a fairly good job staying on topic when asked a question. Of course, he has written a book (well, who hasn't?) and his final comment was to thank everyone in America for buying his book. His mom smiled. It seems she and her son have gotten to be quite the travelers, going around the country so that he can speak at conferences and accept awards. He even won an ESPY for his amazing basketball performance. I know before you say it, reader, that I'm slipping back into that bitter place...but I am only human, and while I am too tenderhearted to begrudge this young man every bit of success he can muster, I do not think his face is the "Face of Autism," as Mr. King labeled him. He can be the "Face of High-Functioning Autism" if he likes.
But I dropped the "Face of Autism" off at school this morning, in 35 degree weather, without a coat because apparently today was not a coat day, walked him down the hall as he smiled at friends while flapping his hands, and left him in his special needs classroom to work very, very hard to keep progressing, one little step at a time.
I got to kiss that sweet face goodbye, though...so I'm the lucky one. :-)
Last night Larry King had another show about autism. To his credit, at least he's TALKING about autism, which is more than most people in show business do. The show was entitled "Autism: Solving the Puzzle." To be honest, my initial thought (especially once I saw that the young man everyone calls "J-Mac" was the featured guest) was...Nope. Not gonna sit through another feel-good show about "autism" - and by "autism" they mean high-functioning verbal kids and/or kids whose parents are mega-rich.
But David said..."C'mon...let's watch it." I agreed, especially since I saw that other guests were involved: Holly Robinson Peete, Toni Braxton, and Doug Flutie - all of whom have sons with varying degrees of autism.
Of course, the footage from Jason McElwain's amazing basketball game two years ago had to be shown, and everyone congratulated him once again. Holly's son, who is 10 years old, had apparently expressed a desire to meet the great J-Mac (who is now 19) - so there was also footage of the Peete family welcoming J-Mac over for a few hoops in the driveway. So far the feel-good meter is off the charts.
Toni Braxton then chimed in, describing how much better her son is. I didn't catch how old her son Diezel is, but she was careful to mention that he is doing very well "because I have been able to get him all the treatments he needs." Yes. Indeed.
Between the fawning over J-Mac and the oozing sweetness of Holly and Toni, I was really starting to wish I had decided to clean the kitchen or fold some clothes instead of watching...but I persisted, rolling my eyes and "hmph-ing" every two seconds.
Let me say this: I recognize that Jason McElwain has struggled. His mom was with him, and she briefly explained that he was rather low functioning as a child. It IS truly amazing that he developed such a command of language, and that he has risen to minor (or major?) stardom because of his miraculous basketball game. Yes, it's wonderful, and I suppose part of me thinks, "Well, maybe Stephen will make huge leaps like that," and of course I would be ecstatic. But once again, the suspender-wearing, guest-interrupting, patronizing-question-asking Larry King is the media ringleader in promoting the inaccurate fact that Jason's autism is all that autism IS. He said, "J-Mac is the face of autism." I was getting my dander up over this, until the next guest finally got a chance to speak.
"Joining us from Boston, the great football legend, Doug Flutie...Doug has a son with autism. Doug, tell us...what has J-Mac done for the autism cause?" Doug looked straight into the camera and said, "Larry, basically, J-Mac has brought awareness to the autism issue...like the Doug Flutie Jr. Foundation has tried to do." Wow. No fawning, no over-doing it with the praise... Now, I'm interested.
Eventually, Larry got around to mentioning that there are various degrees of autism, and then polled his guests to find out about their kids' levels. Of course, J-Mac's mom said, "Now, he's high functioning." Ditto for Holly and Toni (well, Toni said mid-to high). Then it was Doug's turn. "Dougie is very low-functioning. He is 16 now, and he can't feed himself, dress himself, or talk at all." I watched intently as Doug looked straight into the camera, quietly and calmly saying, "Hey, my son can barely function..." and I noticed something - the lines on his face, the fatigue, the sadness in his eyes even as he smiled and told about the joy his son brings to him every day, the wistful hope in his voice, wanting so much for his son to progress. The face of a parent who dies inside when his child struggles to get through a day, the smile that somehow combines happiness with heartbreak, the clenched jaw that is equal parts stubbornness, frustration, and anger...the child who is trapped inside his body, with a brain and a heart and an imagination, the child who is scorned or overlooked because he appears to be dumb, the child who hurts and can't ask for help...these are the faces of autism. I recognize these faces...I see one in the mirror every day, in my husband's face every day, and in BOTH my sons' faces...one wanting his brother to just get better, and the other that faces every day dealing with challenges that I may never truly understand, but with a smile that melts your heart.
There was pretty much no response to Doug Flutie's rather down-to-earth description, so Larry moved the show along. The next question applied to everyone was: "What are your goals for your child?" Well, J-Mac answered on his own. He wants to be an assistant coach, which will be difficult, as his mom explained, with the learning problems he has. Well, more power to him, I say. Holly Robinson Peete's son wants to play basketball like J-Mac. And Toni's son is excited about going to a typical peer's birthday party, and she just wants him to continue to improve. So Larry leans on his hand and intones, "Doug...I suppose Dougie isn't ABLE to tell you his goals..." Such sensitivity. [Michelle to Larry: You MORON.] Doug paused, and said, "Well, no, Larry. He isn't. But our goals for him just involve him learning to function better in his everyday life." Larry, in a patronizing tone: "Well, Doug...do you have HOPE?" [Michelle to Larry: You are an idiot.] And Doug smiled. "Of course we do, Larry. Of course we do."
The rest of Larry King's show was more of the same old banter: What IS autism? Can it be cured? What causes it? At this point Dr. Jerry Kartzinel joined the panel. Dr. Kartzinel is a name you may recognize as the doctor who helped "cure" Jenny McCarthy's son Evan's autism. I believe that Dr. Kartzinel is a good man, and a good doctor - if only every large city had one like him, and if only every family could afford the huge fees he charges. Dr. Kartzinel addressed the "Do vaccines cause autism?" question, and unfortunately allowed the other panelists to engage in a discussion of thimerosal and its suspicious role in this autism thing. That's not to say it didn't ONCE play a part, but it's not the whole story. Thimerosal has been removed from kid's vaccines, and kids are STILL getting autism. Something else is going on here, I have no doubt. Is it merely coincidental that so many kids regress after a big batch of shots? Probably not. Perhaps their immature immune systems can't handle such a toxic load. Toni Braxton actually made that point, and for that I will pardon her for her comment about being able to give her child ALL the treatments he needed.
Dr. Kartzinel pointed out, very appropriately I thought, that the "experts" who continue to insist that autism is purely a genetic disorder cannot account for the epidemic we're seeing. "There is no such thing as a genetic epidemic." Amen, brother. And the good doctor finished up his moments on the show with a profound statement that needs to be absorbed by everyone in this country. When asked if a cure is possible, he said, "There HAS to be. There HAS to be a cure. We cannot keep sacrificing 1 out of every 150 children to this disease." People need to HEAR that, and be driven by fear to DO something.
J-Mac's mom had mentioned several times that he has to "rehearse" for any public speaking he does. He had been coached well, and was very composed and did a fairly good job staying on topic when asked a question. Of course, he has written a book (well, who hasn't?) and his final comment was to thank everyone in America for buying his book. His mom smiled. It seems she and her son have gotten to be quite the travelers, going around the country so that he can speak at conferences and accept awards. He even won an ESPY for his amazing basketball performance. I know before you say it, reader, that I'm slipping back into that bitter place...but I am only human, and while I am too tenderhearted to begrudge this young man every bit of success he can muster, I do not think his face is the "Face of Autism," as Mr. King labeled him. He can be the "Face of High-Functioning Autism" if he likes.
But I dropped the "Face of Autism" off at school this morning, in 35 degree weather, without a coat because apparently today was not a coat day, walked him down the hall as he smiled at friends while flapping his hands, and left him in his special needs classroom to work very, very hard to keep progressing, one little step at a time.
I got to kiss that sweet face goodbye, though...so I'm the lucky one. :-)
Friday, February 15, 2008
Happy Birthday, Stephen
Today my baby is eight years old.
The child who wasn't "planned," born after a pregnancy that was full of nausea and bleeding from a low-lying placenta, the newborn who barely waited till we got to the hospital to make his appearance...that precious little piece of humanity has been with us for eight years now, and we are forever changed.
Unlike Kerry, who took his sweet time coming into the world (and he is still very laidback and easygoing), Stephen joined us with speed and urgency. Funny, that description still fits him today as well. I went from having contractions that were ten minutes apart to contractions that were two minutes apart after my water broke. We had to SPEED to the hospital and Stephen was born just over an hour later.
He was a good baby - he slept well and nursed well for the first few months. Then he developed reflux and had to take medicine for that. During his first year he would sometimes wake up wailing and crying (probably from gas pain) and it would take me a long time to get him calm. Still, he was fairly easy to care for during the day, and I reveled in my role as mommy to a two year old and a baby. Stephen learned to sit up at about 5 months, was babbling words (Mama, Dada, bye-bye, gone-gone) by about 9 or 10 months, and he walked at 11 months...he met all those milestones with no problems, and we felt comfortable and happy with our little family.
Sometime after Stephen turned a year old - maybe not until he was about 15 months old - I started to worry that he wasn't talking much more. In fact, when I thought about it, he wasn't saying the few words he had used frequently only a few months prior. I fretted and pondered this, but the pediatrician we had at the time reassured me: "He's your second child. They never talk as much as the first. Don't worry."
So, I tried not to...but by the time Stephen was 18 months old, I knew something was wrong. He never said a word. He would go into his room and play with one toy (one of those wooden bead roller coasters) for 30 to 45 minutes at a time, sliding the beads from one end of the toy to the other, one at a time, then sliding them back...over and over. He would take a toy truck, turn it upside down, and spin the wheels. When he wanted something, he would take my hand, lead me to the item, and put my hand on it, letting me know he wanted that book or toy.
I was secretly petrified. One night I happened to be at a bookstore by myself, and I wandered over to the parenting section. I saw a book about autism, and with shaking hands I picked it up. Even then, I knew. I flipped through, looking for some sort of concise description, and my heart froze when I began to read the so-called "red flags" of autism:
* Does not babble, point, or make meaningful gestures by 1 year of age
* Does not speak one word by 16 months
* Does not combine two words by 2 years
* Does not respond to name
* Loses language or social skills
* Poor eye contact
* Doesn't seem to know how to play with toys
* Excessively lines up toys or other objects
* Is attached to one particular toy or object
* Doesn't smile
* At times seems to be hearing impaired
Stephen showed 9 out of those 11 signs. He smiled, and he would often make eye contact, but every single one of the remaining statements described my child perfectly. I sat in the floor of that Barnes & Noble bookstore and cried like a baby. I read things like, "Autism is a lifelong neurological disorder." "Many children with autism eventually will be placed in institutional care." "There is no cure for autism."
Something inside of me shattered irreparably that night. I knew with a mother's certainty that my son had autism. I went home and walked into Stephen's room. I don't think he was in there at the time, but I remember sitting down heavily in the armchair. David walked in, took one look at me, and said, "What is it?" I looked at him, and in a voice I didn't recognize I said, "Stephen has autism." And I cried - for the child that I now knew might never speak, never play like other kids, never be "normal." We accepted the autism that very night, both of us...both of us knew that we had to deal with it and move on.
And we did. We had to jump through a few hoops - I found a hotline for kids at risk, called it, and a very helpful case worker helped me set up an appointment for a speech and hearing evaluation. I told her that we knew he could hear, and we also knew he couldn't speak - but regardless, this was the first step. We had to rule out a hearing problem.
I took Stephen to the first speech and hearing eval - and watched as cheerful women did their best to engage him. He stared at them blankly as they tried to get him to play with their colorful educational toys. They wrote furiously on their pads, and then told me that he had "some sort of speech delay." Really? Okay then. Hoop number 1.
In the weeks following we scheduled a hearing eval. I took Stephen to our childrens' hospital, and went with him into the hearing test booth. He refused to wear earphones (of course) and so we sat together in a chair while the technicians bounced sounds around, lit up buzzing toys in various corners (meant to draw his attention when he heard them) and other bells and whistles. Stephen sat resolutely in my lap, staring straight ahead. Even when the sounds got so loud they were bothering ME, he never budged. The speech and hearing professional told me gravely, "According to these results, Stephen has profound hearing loss." Really? Okay then. Hoop number 2.
Because David and I, having lived with Stephen his whole life and knowing that he could hear perfectly well when he WANTED to, insisted, we were granted the opportunity to have a test called an ABR (automated brain response) done on Stephen. We took him to a pediatric ENT who looked in Stephen's ears (with much fighting and difficulty) and said that he would sedate him, get any fluid out that was accumulated, put tubes in, and perform the test. We took Stephen a few days later and watched as he was given something to relax him, dressed him in a tiny flannel hospital gown, and watched as our child was wheeled to an OR to have these procedures done. You see, the ABR was going to measure his hearing capacity without requiring him to participate. An hour later a grim hearing professional came out to tell us that Stephen's hearing was "perfectly normal." Really? Okay then. Hoop number 3.
Finally, after jumping through hoops as impressively as well-trained poodles, a few weeks later a pediatric behavioral specialist came to our house to test Stephen. I watched as she gave him activities to do - most of which he ignored - and as she tried in various ways to engage him. After a couple of hours, she sat quietly at our table tabulating her results and charting the data. David, my mom, and I sat in the living room, silently staring at the walls, the TV, each other. Then she walked back into the room, took a breath, and said, "According to the test results, Stephen has autism."
My mom immediately cried, David maintained his serious look, and I felt myself sink a little deeper. There was no shock, no panic, no horrible realization. It was more like someone had just put a big iron padlock on a door that I had already closed tightly on my own.
Stephen was 2 years and 3 months old, and on that day in May, I felt his life was over.
I began to read everything I could get my hands on, and before long I came across a book that fell into the "I cured my child of autism" genre. It was a mother's story (and I'm a sucker for those) of how she changed her child's diet and rescued him from this dreaded disorder. I've mentioned before that we jumped into that notion with both feet, and I cooked and cajoled and tried to get Stephen to eat rather weird substitutions for foods he liked. We took him to the first DAN! doctor who did an EEG and told us he was having seizures, and started medicating him for those. We struggled to get urine samples. We took him to other doctors. We forced vile-smelling and -tasting anti-fungal drugs down his throat. We did more tests, all the while trying to pretend we saw results. But in the end, we didn't. We had traveled far and wide, spent thousands of dollars, and put Stephen through the wringer...only to discover that maybe this stuff didn't work. For some people? Maybe. For us, apparently not.
The years have passed...often turbulently, mostly chaotically, eventfully to say the least. Our sons have grown before our eyes. I would not trade one single moment, when I stop to consider it all. Even the nights of Stephen screaming, the times I've felt like I was going to pop my cork, the times I've worried and dreaded doctor's appointments, or haircuts...like it or not, simply MAKING it through those times has given me strength. I know that there isn't much that comes that I can't handle - I may not always come out feeling great, but I can make it. I often think about children like this one, like this most precious son of mine, who are born to parents who, for whatever reason, can't deal with things...and I think, "Who takes care of those babies? Who loves the ones who are sometimes almost unlovable?" It breaks my heart, but I rest in the knowledge that Stephen is surrounded by people who love him - by a mom and a dad who grit their teeth and push through the problems, by a shining, golden big brother with the patience and kindness of an old soul, by grandparents who do their very best...and this child of mine somehow works his magic on almost everyone he meets. Everyone at his school smiles when they see Stephen walk in...they rejoice with us in his triumphs, and they truly love this little boy who came so close to being lost. He has so very far to go, but he is growing and healthy, he reads and writes his letters, he sings, he dances, he plays, he hugs his daddy and laughs with him, he kisses me and rests his head on my shoulder...
Stephen is eight today, and it turns out that his life is far from over.
The child who wasn't "planned," born after a pregnancy that was full of nausea and bleeding from a low-lying placenta, the newborn who barely waited till we got to the hospital to make his appearance...that precious little piece of humanity has been with us for eight years now, and we are forever changed.
Unlike Kerry, who took his sweet time coming into the world (and he is still very laidback and easygoing), Stephen joined us with speed and urgency. Funny, that description still fits him today as well. I went from having contractions that were ten minutes apart to contractions that were two minutes apart after my water broke. We had to SPEED to the hospital and Stephen was born just over an hour later.
He was a good baby - he slept well and nursed well for the first few months. Then he developed reflux and had to take medicine for that. During his first year he would sometimes wake up wailing and crying (probably from gas pain) and it would take me a long time to get him calm. Still, he was fairly easy to care for during the day, and I reveled in my role as mommy to a two year old and a baby. Stephen learned to sit up at about 5 months, was babbling words (Mama, Dada, bye-bye, gone-gone) by about 9 or 10 months, and he walked at 11 months...he met all those milestones with no problems, and we felt comfortable and happy with our little family.
Sometime after Stephen turned a year old - maybe not until he was about 15 months old - I started to worry that he wasn't talking much more. In fact, when I thought about it, he wasn't saying the few words he had used frequently only a few months prior. I fretted and pondered this, but the pediatrician we had at the time reassured me: "He's your second child. They never talk as much as the first. Don't worry."
So, I tried not to...but by the time Stephen was 18 months old, I knew something was wrong. He never said a word. He would go into his room and play with one toy (one of those wooden bead roller coasters) for 30 to 45 minutes at a time, sliding the beads from one end of the toy to the other, one at a time, then sliding them back...over and over. He would take a toy truck, turn it upside down, and spin the wheels. When he wanted something, he would take my hand, lead me to the item, and put my hand on it, letting me know he wanted that book or toy.
I was secretly petrified. One night I happened to be at a bookstore by myself, and I wandered over to the parenting section. I saw a book about autism, and with shaking hands I picked it up. Even then, I knew. I flipped through, looking for some sort of concise description, and my heart froze when I began to read the so-called "red flags" of autism:
* Does not babble, point, or make meaningful gestures by 1 year of age
* Does not speak one word by 16 months
* Does not combine two words by 2 years
* Does not respond to name
* Loses language or social skills
* Poor eye contact
* Doesn't seem to know how to play with toys
* Excessively lines up toys or other objects
* Is attached to one particular toy or object
* Doesn't smile
* At times seems to be hearing impaired
Stephen showed 9 out of those 11 signs. He smiled, and he would often make eye contact, but every single one of the remaining statements described my child perfectly. I sat in the floor of that Barnes & Noble bookstore and cried like a baby. I read things like, "Autism is a lifelong neurological disorder." "Many children with autism eventually will be placed in institutional care." "There is no cure for autism."
Something inside of me shattered irreparably that night. I knew with a mother's certainty that my son had autism. I went home and walked into Stephen's room. I don't think he was in there at the time, but I remember sitting down heavily in the armchair. David walked in, took one look at me, and said, "What is it?" I looked at him, and in a voice I didn't recognize I said, "Stephen has autism." And I cried - for the child that I now knew might never speak, never play like other kids, never be "normal." We accepted the autism that very night, both of us...both of us knew that we had to deal with it and move on.
And we did. We had to jump through a few hoops - I found a hotline for kids at risk, called it, and a very helpful case worker helped me set up an appointment for a speech and hearing evaluation. I told her that we knew he could hear, and we also knew he couldn't speak - but regardless, this was the first step. We had to rule out a hearing problem.
I took Stephen to the first speech and hearing eval - and watched as cheerful women did their best to engage him. He stared at them blankly as they tried to get him to play with their colorful educational toys. They wrote furiously on their pads, and then told me that he had "some sort of speech delay." Really? Okay then. Hoop number 1.
In the weeks following we scheduled a hearing eval. I took Stephen to our childrens' hospital, and went with him into the hearing test booth. He refused to wear earphones (of course) and so we sat together in a chair while the technicians bounced sounds around, lit up buzzing toys in various corners (meant to draw his attention when he heard them) and other bells and whistles. Stephen sat resolutely in my lap, staring straight ahead. Even when the sounds got so loud they were bothering ME, he never budged. The speech and hearing professional told me gravely, "According to these results, Stephen has profound hearing loss." Really? Okay then. Hoop number 2.
Because David and I, having lived with Stephen his whole life and knowing that he could hear perfectly well when he WANTED to, insisted, we were granted the opportunity to have a test called an ABR (automated brain response) done on Stephen. We took him to a pediatric ENT who looked in Stephen's ears (with much fighting and difficulty) and said that he would sedate him, get any fluid out that was accumulated, put tubes in, and perform the test. We took Stephen a few days later and watched as he was given something to relax him, dressed him in a tiny flannel hospital gown, and watched as our child was wheeled to an OR to have these procedures done. You see, the ABR was going to measure his hearing capacity without requiring him to participate. An hour later a grim hearing professional came out to tell us that Stephen's hearing was "perfectly normal." Really? Okay then. Hoop number 3.
Finally, after jumping through hoops as impressively as well-trained poodles, a few weeks later a pediatric behavioral specialist came to our house to test Stephen. I watched as she gave him activities to do - most of which he ignored - and as she tried in various ways to engage him. After a couple of hours, she sat quietly at our table tabulating her results and charting the data. David, my mom, and I sat in the living room, silently staring at the walls, the TV, each other. Then she walked back into the room, took a breath, and said, "According to the test results, Stephen has autism."
My mom immediately cried, David maintained his serious look, and I felt myself sink a little deeper. There was no shock, no panic, no horrible realization. It was more like someone had just put a big iron padlock on a door that I had already closed tightly on my own.
Stephen was 2 years and 3 months old, and on that day in May, I felt his life was over.
I began to read everything I could get my hands on, and before long I came across a book that fell into the "I cured my child of autism" genre. It was a mother's story (and I'm a sucker for those) of how she changed her child's diet and rescued him from this dreaded disorder. I've mentioned before that we jumped into that notion with both feet, and I cooked and cajoled and tried to get Stephen to eat rather weird substitutions for foods he liked. We took him to the first DAN! doctor who did an EEG and told us he was having seizures, and started medicating him for those. We struggled to get urine samples. We took him to other doctors. We forced vile-smelling and -tasting anti-fungal drugs down his throat. We did more tests, all the while trying to pretend we saw results. But in the end, we didn't. We had traveled far and wide, spent thousands of dollars, and put Stephen through the wringer...only to discover that maybe this stuff didn't work. For some people? Maybe. For us, apparently not.
The years have passed...often turbulently, mostly chaotically, eventfully to say the least. Our sons have grown before our eyes. I would not trade one single moment, when I stop to consider it all. Even the nights of Stephen screaming, the times I've felt like I was going to pop my cork, the times I've worried and dreaded doctor's appointments, or haircuts...like it or not, simply MAKING it through those times has given me strength. I know that there isn't much that comes that I can't handle - I may not always come out feeling great, but I can make it. I often think about children like this one, like this most precious son of mine, who are born to parents who, for whatever reason, can't deal with things...and I think, "Who takes care of those babies? Who loves the ones who are sometimes almost unlovable?" It breaks my heart, but I rest in the knowledge that Stephen is surrounded by people who love him - by a mom and a dad who grit their teeth and push through the problems, by a shining, golden big brother with the patience and kindness of an old soul, by grandparents who do their very best...and this child of mine somehow works his magic on almost everyone he meets. Everyone at his school smiles when they see Stephen walk in...they rejoice with us in his triumphs, and they truly love this little boy who came so close to being lost. He has so very far to go, but he is growing and healthy, he reads and writes his letters, he sings, he dances, he plays, he hugs his daddy and laughs with him, he kisses me and rests his head on my shoulder...
Stephen is eight today, and it turns out that his life is far from over.