I'm standing at the end of a long, dark hallway. Bluish light spills from one open door...it flickers strangely and I lean my head against the cool smoothness of the wall, watching and listening fearfully, my senses heightened, but my head aching with tiredness.
I wish that was a description of a dream I had last night. That's what that sounds like, sort of. But it's what I just experienced about 5 minutes ago.
It's 4:08 a.m. and Stephen is awake. I first heard him at 3-something, talking to himself and squirming on his bed. Finally I got up and we began the couch-to-bed routine. Then, it was time for the drag-mom-to-the-video-cabinet routine. We already had the turn-the-TV-on-LOUD segment. I sat sleepily by the VCR, waiting for him to make his selection...he kept coming to me saying, "Watch." "Yes, watch." Pushing my hand toward the locked VCR..."Watch!" My voice breaks: "Stephen. There's no tape in there."
"Tape....WATCH!"
"Get a tape from the cabinet. Go get one....I don't know what you want!"
"Watch."
Finally in frustration I pull him down to sit beside me, grasp his shoulders and push him down to look at the empty tape slot. "There IS NO TAPE in there!"
That does it, and he plods over to the cabinet to find what he had in mind. Tape goes in, and I went back to the couch, hoping to lapse into that light sort of sleep you can sometimes get while you keep one ear open, listening for problems.
*clunk*
I jump, startled. Was that him going into Kerry's room? Go check. No, he must've just tossed himself onto his bed with a little extra force. Back to the couch. But this time I can't seem to slip into any kind of doze, so I lay there on my back, trying to decide if I want to indulge in one of those soul-searing sobbing sessions. You know the ones - you grab a pillow, hug it tight to your stomach, curl into the fetal position, and just let go. I thought that was what I needed. After all, he has been doing this a LOT over the last few weeks. It's starting to feel like a good night's sleep is the exception, not the rule. But the knot in my gut just tightens more, and I can tell that I'm not going to be allowed the temporary release of a good cry. Not this time.
I'm too pissed to cry, I think. I mean, for the past 10 minutes Stephen has trotted down the hall, walked to wherever I'm sitting, and either touched my face or brushed his lips against my cheek to give me a "kiss" - and I might as well be made of stone for all the effect those actions had on my motherly heart. I love him, and I'll take care of him...but this dark and otherwise peaceful morning, I'd rather be sleeping than sitting on the living room floor in front of the brightly lit laptop, listening to Stephen's nearly constant clicking of the channel and display buttons on the front of his TV.
Now I hear strains of a Disney song coming from his room. It's one he likes, from "Ichabod and Mr. Toad." I can reliably predict that when it ends, he'll yank the cords of the TV and VCR from the outlet, then come and get me to plug it all back in, rewind, and play again.
Excuse me just a moment.
So, that duty done for now, here I sit, unable to get relaxed enough to nod off on the couch, hating myself for practically ignoring Stephen's little caresses and smiles, hating how autism and sleep problems go hand in hand, hating the fact that in an hour and a half I'm supposed to be up taking a shower and getting ready for work. I've missed several days in the last few weeks because of sleep deprivation. I recently compared it to having a newborn - but I was just thinking that the similarity really ends with just having to wake up at odd hours. It's been a while, but I vaguely remember waking up with my boys when they were infants, and there's a world of difference between reaching into a crib, picking up that tiny, helpless, hungry little body and being able to cuddle your baby son while feeding him, then changing him and (more often than not) putting him back down and crawling back into bed - and waking up with a large and energetic 7 year old who inexplicably thinks that 4 a.m. is an ideal time for playing and watching videos.
I just don't know how to keep going. People say to me, "You're so strong! How do you DO it? I can't imagine how you make it!" And I want to grab them by the shoulders and shake them - HARD - and scream, "You call THIS making it? I'd like to strangle you just for saying that to me."
I'm bitter, and hard, and resentful. I don't like those parts of me, but they are undeniably there. I do my best to keep them around in very short supply, but right now they are in charge, and I just have to step out of the way and let them win.
I had a couple of early morning wake up calls last week - and someone (a well-meaning soul, no doubt) informed me that they were going to "pray for a good night's sleep for Stephen and for you." I smiled the non-committal smile I save for such occasions and went about my day. Stephen happened to sleep that night, and when the inquiry was made the next day, this person BEAMED, "Prayers ARE answered!" Yes, and Santa will leave us lots of fun presents on Christmas morning!
What about the millions of times I have desperately cried out while in my own personal wilderness, looking for answers, wanting to rest and recover and try to prepare for another day, only to be awakened? What about the days that I can't even begin to think straight because of sleep deprivation and tension? Why weren't THOSE prayers answered?
And spare me the "everything happens for a reason" crap. Or, the "God's timing is different than ours" argument. I need help NOW. I need answers NOW. I've had enough character-building and "that which doesn't kill us makes us stronger" material to last me several lifetimes.
I'm tired, but even in my foggy state some lyrics come to mind. I don't LIKE Maynard James Keenan, but damned if the guy doesn't write some stuff that seems to spring straight from my head. Granted he's not talking about dealing with a kid with autism, but that's okay. The universal appeal of music and all that...
Little angel go away
Come again some other day
The devil has my ear today
I'll never hear a word you say
Promised I would find a little solace
And some peace of mind
Whatever just as long as I don't feel so
Desperate and ravenous,
So weak and powerless.
From "Weak And Powerless" - A Perfect Circle
3 comments:
You know, one of the things that compelled me to read "Ghost Rider" was to learn how Neil dealt with his losses. The main thing that kept him going was to keep moving, I guess because deep down, he knew that things would eventually get better. Not to compare your situation to his, but, when does your situation get better? It seems that there is no end in sight for you. When I read your blog and also talk to my friend whose daughter is autistic, I want to reach out and do something to help. I feel helpless, and can only offer words of encouragement. But, I have no frame of reference to properly state my feelings in such a way that would be comforting. Can you offer some help to those of us that want to help and don't know how? I've donated to various charities. I give rides to and from various function for my friend's non-autistic son when I can, to help her out. But, sometimes it doesn't feel like it's enough in my mind. I want to do more.
The fact that you want to do more says a lot, Kevin. Also, helping your friend out as you described is a great, concrete way to help. I think what I would ask of people who really want to help make a difference is to keep talking about autism - get alarmed and involved. Nobody needs to wait till someone in their family is directly impacted, because ultimately this impacts everyone. We need to ask WHY this is happening, and we need real solutions. The other thing I would say is that families with kids with autism can feel very isolated. Learn to be around the kid with autism, and get comfortable - feeling accepted and welcomed by friends who calmly deal with autistic behaviors would be really great for us, and it's something we don't have. Just care, and embrace them. And listen. (Or read their blogs. :-) )
Well, I'm certainly glad to help. Reading your blog has enlightened me. The friend I mentioned that has an autistic daughter doesn't talk much about her feelings. So, I have a difficult time gauging her situation. We've invited them over to the house for Christmas eve, and they've accepted the invitation. They're great people, and their daughter is a very sweet kid. And I don't look at it as charity because they are true friends and their son is close friends with my son. Thanks for the advice. I'll keep it in mind.
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