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.

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.