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.

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 Buffalo, New York, and while “Big Russ” never told his son “I love you,” Tim respected his dad more than anyone else in his life. He learned lessons riding on the back of a garbage truck in the summer that he took with him through college and law school - lessons that drove him to keep going, to do what mattered, and to work hard at what he loved. He did what we all have a chance to do, in one way or another. He took what life gave him, internalized the good stuff, and rose above the bad.

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!”

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.