Straining toward hope

Thankfully it doesn't happen too often, but it happened Saturday night.

David and I both hit rock bottom at the same time. Usually we take turns, and that really helps situations to be a bit more bearable. When we both feel down, it's not an easy thing to deal with at all.

We decided to go out for dinner, and as I've mentioned on several occasions, that in itself is quite an undertaking. We split up - Stephen and I dropped David and Kerry off at Cracker Barrel (I had already told David what I wanted so he could order for me) and then we headed to the McDonalds right across the highway. Strangely enough there wasn't a long line at the drive-thru, so we were back at CB in about 15 minutes. And of course David and Kerry hadn't even gotten seated yet...so there we were, the four of us, standing in the overcrowded "store" part of the restaurant, surrounded by a million junky items and trying to explain to Stephen that we had to WAIT. I could see his brain working: "Mom is holding the bag with my food in it. Usually we walk right in, and I eat. This is a problem."

He started whining rather softly, but it quickly escalated in volume and intensity. The people closest to us in the store started with THE LOOK. He began pulling on my hand..."Lesss go! Lessss go!" I kept leaning down, hugging him tightly, and saying in a calm voice, "Buddy, we have to WAIT..." and doing the sign language for "wait." But it doesn't work. I started remembering other visits to Cracker Barrel, and the last several times Stephen hasn't had to do this kind of waiting...so he clearly doesn't understand why his mom is torturing him. In desperation I took him into the bathroom and turned on the faucet in the sink, hoping he'd play in the water. He did, for about 10 seconds. "Lessss go!"

We emerged from the bathroom and I told David, "Time to play the autism card," which means: go to the hostess, tell her what's going on, and pretty much beg for quick seating so as not to cause a huge scene. So he does, and it works. On the way to the table she told David that her cousin has autism, and that she understands perfectly. Thank goodness for small favors.

It's hard to describe in words exactly what the effect of 20 minutes of full-on, publicly displayed, loudly proclaimed autism can have on a person's nerves. But the four of us settled down at our table, I got Stephen's food out, and we tried to relax. The problem is that once the tension gets hold of you in a significant way, it's hard to shake it. At one point Stephen reached over and touched my arm, and I jumped a few inches out of my seat...my nerves were a jangled mess. But we made it though the meal well enough...no spills, and Stephen only tried once to escape from the table.

We made a trip to Wal-Mart, too, without significant incident...and we trundled home, mostly just glad it was all over. Once we got inside, David had to leave again because Wal-Mart was predictably out of Stephen's Pull-Ups...and as he prepared to go out the door to try another store, Stephen launched into a tantrum because he couldn't get all of us to "Go 'way!" from the living room - he tries to get us to leave so that he can sneak a tape into the non-secured VCR and fast-forward it in peace. Kerry left and went to his room, and I stood guard. As David left he said, "You know, all of this tension is going to have an effect on Kerry...I just don't know what it's going to be..." Right now Kerry seems very much a typical 10 year old boy...maybe a bit too forgetful and a bit too enamored with video games, but also extremely compassionate and fun-loving, with a sense of humor better than anyone I know. But, will it last? Is he being done irreparable harm by living in this environment?

I got Stephen calm, and ready for bed. Kerry came back to the living room, and we spent some time just talking, and I read to him from the Harry Potter book he's reading...and he was smiling and happy and the same sweet Kerry I know. After both boys were in bed, I spent a lot of time thinking about what David had said. We both know that our family life is far from the ideal...and yes, tension and stress seem to be an inevitable part of daily living. We also try very hard, though, to help Kerry through those times, both by letting him express how he feels (embarrassed, annoyed, tired) and by making time to do things just for him. But is it enough?

Later David and I were talking. We worry that when Kerry gets to be an adult that he will want to run far from the home he has known all his life - a home that has always included a little brother with autism, who messes up his stuff and seemingly gets away with it, who throws nerve-tangling tantrums, whose insistence on sameness brings about endless pre-emptive planning. I mean, who wouldn't want to get as far away from that as possible?

As the reality of that scenario began to sink into my consciousness, I was hit with a wave of despair, of pure and utter hopelessness. I felt like I was going to be forced to choose between my sons - do I keep Stephen in my care as long as I am physically able to handle him, and risk alienating my shining golden son who deserves every possible chance to develop into the amazing man I know he will become, or do I focus on Kerry's potential and "find a place" to put Stephen where he may or may not be cared for and respected as a person? It seems an impossible choice, and I felt like a knife was cutting into me just to consider these thoughts.

I went into the pitch dark living room, grabbed a few tissues, and let myself grieve. There simply was no other choice at the moment. Eventually I was spent, and I crawled back to bed. Mercifully my brain simply said, "No more," and allowed my body to shut down. There was no resolution, but I slept.

I woke up the next morning to the sounds of a quietly happy little boy, still in bed but perhaps talking to one of his stuffed animals. I went down the hall to the couch, and before long he came padding behind me, and climbed under the quilt. He snuggled close to me and we both slept for another hour. When I woke up the second time, the first thing I heard was the sound of birds in the tree outside our deck. I looked down into Stephen's face and had the rare opportunity to just watch him sleep. And then, completely unbidden, I was flooded with a calmness and a certainty that was completely impossible. I knew that we would make it. I thought of Kerry. I pictured him as he'd been when I walked past his room earlier...covered nearly to the top of his head, arms wrapped around his bear, and I knew just as certainly that he was going to succeed and prosper.

Now, before you go getting all misty and mystical on me...I don't attribute my feelings to a message or sign from God. I don't know WHERE it came from, or if it will last. Call it cockeyed optimism, call it a coping mechanism, call it certifiably nutsy behavior. I can't seem to totally give up on much of anything, really. Regardless, that peace and calm energized me. I realized that ultimately what I had done was make a choice. A choice between carrying around the boulder of dread and worry and despair, or reaching and stretching toward a hopeful future. Even as I type that I know that it's a longshot. Almost everything points to problems and worries...but to make it, to stay sane, to grab the elusive moments of happiness, I choose to believe that we will make it. That one day, we'll arrive at a point of triumph...battle-weary and scarred with the pain of a thousand exhausting days, but alive.

I'm straining and clawing my way towards hope...it's all I have.