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?

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.

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.

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…

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.

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!

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.

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.