The reluctant traveler

It's 12:45 a.m. I'm sitting in the cramped, stuffy "spare" room at my parents' house, typing on my dad's antiquated PC. Stephen is asleep on his air mattress in their living room. I can't sleep. David will read this, note the time, and tell me: "I can't believe you didn't fall asleep!"

Stephen and I drove here at 11:30, after he became more and more restless and wired and refused to go to sleep at home. He had his meds as usual. Eventually I even gave him an extra 1/2 dose, which I'm allowed to do when he's extra stubborn (and it's been months since I had to do that). He wouldn't lie down. He kept wanting lights off, then on. He began acting like it was morning and he'd just woken up. Unbelievable.

I have no idea what happened. I am at a total loss, and that is my least favorite state of being.

He got sleepy on the ride here, but woke up as soon as I had to get him out of the car. He launched right back into his whiny, agitated state. My mom and I sat in the den and looked at the walls. At one point she said she could tell that I was not doing very well. I agreed. Finally I told her to go to bed. I closed off part of the house so at least Stephen wouldn't disturb my parents. I lay down with him and tried to hug him tight to see if that would help. It didn't.

So, I left the room, called home to let David know we were okay (well, safe anyway) and just waited. After about 5 minutes, I heard nothing, and peeked to see that he had finally collapsed.

This kind of thing used to happen all the time. Thankfully this is an isolated incident. It better be. I just can't go here, like this - not anymore.

The worst part of this whole evening is that Stephen had been fine earlier. I was feeling calm(ish) and looking forward to a good night's sleep. This came out of nowhere. What if it happens again? I know I shouldn't think that way, but I do.

The other disturbing thing is that I sit here dry-eyed. I can't even lessen the pain I feel by crying. Or sleeping.

Life is good?

I’m beginning today with a comment I only recently received on the last post I wrote, which was back in June:

“…I check your blog often and see you that you have been quiet for a while. While some of the other blogs seem to be more popular and trite at times, yours rings of honesty. ~Leigh.” 

There are two remarkable things going on here.  First, someone checks my blog often?  I’m honored yet ashamed that I’ve been silent for months.  Secondly, that phrase “yours rings of honesty” means SO MUCH to me.  Because if nothing else, I’ve tried my best to be honest – sometimes brutally so – and sometimes I’ve felt that was off-putting, that nobody wants to read about how awful I’m feeling.

And after the weekend we just had, I’m feeling awful.

This morning on the way to work, I saw a Jeep with a “Life is good” wheel cover on the back…and just to the left was a puzzle-ribbon “Autism Awareness” magnet.  These two items in juxtaposition?  Does not compute. 

Obviously, some people are happy.  Life seems to be generally good for 99% of the people I come in contact with, whose cheerful posts I see on Facebook, who seem to float through life with relative ease.  (No, I’m not saying those people don’t have problems.  No, I’m not claiming that my life is the worst possible life.  Of course things could be worse, blah blah blah.)  But I do not see how anyone with any firsthand “Autism Awareness” could also feel that “Life is good.”  I just don’t.

This weekend was bad.  Part of the problem stems from the fact that Stephen has developed a habit of having us do Google searches on his iPad for videos or DVDs that he wants.  He had asked for a certain Blue’s Clues one so repeatedly a few weeks ago that I finally broke down and ordered it, we printed out a picture of the cover and put it on his calendar for the following weekend (I fervently prayed to the gods of Amazon.com to PLEASE make sure it got delivered by that Saturday).  Great, right?  He was happy when the day came and he got “Get to Know Joe.”  Only, in his brain, where precious few things connect and make sense, Stephen quickly realized that if we looked up things, he asked and asked and asked, then Mama sits at the laptop, something magical happens and DVDs show up in cardboard boxes.  (I won’t even mention what happens when Stephen finds an older image of a VHS tape that he has, but of course his cover looks different.  He doesn’t understand that it’s the same content.) 

And so this past weekend, we received a Bob the Builder DVD he had wanted…he was happy enough when I ordered it a week before, but midweek he found a Thomas one he wanted.  Since we already had something on the calendar for Saturday, I kept saying, “Next time,” or “Next week.”  He doesn’t understand that.  He just starts saying, “Next time, please.”  When that starts and I realize anew the limitations of his understanding, I want to pull my hair out by the roots.

Let me insert here that of COURSE we don’t have the money to keep a constant stream of DVDs coming in.  Luckily they’re fairly inexpensive…I told Kerry once that when I buy a DVD, what I’m really trying to do is purchase is a few minutes of sanity.  That’s Stephenomics, and it applies to the financial sector as well as other goods and services.  Buy a bag of Cheetos when I know we have one at home?  Sure.  $2.99 will buy me 3 minutes of peace at the grocery store.  Spend 10 minutes putting wooden trains into the roundhouse when I really want to watch TV?  That’ll buy me 5 minutes of calming down to get Stephen into bed.

And really – before I overdo it on the details of all these transactions – the crux of it all is Stephen’s inability to understand the most basic things, and the pain he feels and CAUSES when all isn’t going to suit him.  It’s so far beyond him being “spoiled,” too – it’s his bizarre reliance on patterns and his insistence on sameness.  If I see this picture, I want that thing, and I can’t stop thinking about it until I see some sort of evidence that shows me I will get that thing in the near future.

If I had hours and hours to spend with him, maybe I could last through the tantrums and after many, many, many hours of repetition, train him away from this type of thinking.  But I don’t have that time, and so I keep going, trying to work with his “logic” within reason, and trying to outlast the upset if I can’t make things work otherwise.  For example, the pool we belong to closed after Labor Day, and there’s nothing we can do but say “We’re all done swim,” when he asks.  And that first weekend?  BAD.  Crying and crying and crying and squealing.  Awful.  It’s slowly gotten better, but he’ll continue to ask well into wintertime.  Another one: he has been on school trips to the local bowling alley.  It’s called “Oak Mountain Lanes.”  He can recognize words quite well, so if we pass a sign – ANY sign – that contains the word “mountain,” or especially “Oak Mountain” (and there’s a lot of stuff around here named that – we have a state park, schools, businesses) – he points frantically.  “Ohhh Mountain please.”  If I say "Oh, we’ll go sometime…”  “Sometime please.”  And I would take him, too – but then he’d want to go all the time.  And we can’t.  So we don’t go at all, lest we start up another pattern.  He can’t understand things well enough to, say, “earn” a trip to bowling.  So that won’t work.

When you live in a household that quite often hums with the chaos that autism causes, the last thing you want on a “peaceful” Sunday morning is for some unforeseen something to happen that will start up the squealing.  But of course that’s what happened yesterday.  First the internet froze up.  I fixed it but it was too late.  Then he tried to watch one of his old DVDs with a million scratches.  The main content works fine (miraculously) but oh, that would be too simple!  No, Stephen wants to watch the “sneak peeks” on one of the obscure menus – and he wants to watch it at 32x speed.  And because that section of the disc looks like a cat used it for a scratching post, the damned thing just won’t PLAY at 32x speed.  So the squeals started.  And he gets louder and louder, gritting his teeth and clenching his hands.  Knowing that David and Kerry were still asleep, my gut locked up.  It felt like I’d swallowed a 20 pound weight.  The pressure built in my head, my heart raced.  “Shhhhh!  Stephen, PLEASE!”  I pressed on his head, his shoulders, trying to find something to calm him.  (Actually “squeal” sounds way too cute for the noise he produces.  Maybe screech?  Scream?  Something of a mix of those two is about right.  It gathers your nerves into a tangle that takes a long time to untwist.)

Nothing worked.  By this time, everyone was up.  We all walked around in silence, almost avoiding each others’ eyes.  Why do we do that?  Is it just too painful to see the anger, the hurt, the confusion in the other person?  You feel angry – who is there to be angry with?  Stephen?  Sure, sometimes, I get mad at him.  Completely and unreasonably angry, then I feel like the worst person on the planet.  Sometimes I just snap at the others around me, knowing that I’m being ridiculous and petty.  And I do it anyway.

And so, what?  What is the answer?  There isn’t one, and it is the most awful feeling.  I’ve been told to accept that someday he just won’t be able to live with us.  And then the next day I’ll read about the abuse of mentally handicapped people.  And my stomach turns.  How can I trust this innocent soul will be cared for?  He has no voice and could never, ever tell if someone hurt him.  So there’s that.  There’s the guilt I carry around for what Kerry deals with, things his friends never have to worry about.  Does he feel pushed aside?  Angry? 

There’s David, and our marriage.  The stress is unbelievable.  By the time Stephen finally succumbed to sleep last night, I felt (and looked, I’m sure) like the walking dead.  I could barely string three words into a sentence.  I had done laundry and cleaned the kitchen and defrosted the deep freezer and mended some of Kerry’s clothes and tried to study for the GMAT like an automaton – why?  Why not sit and relax?  Do some of those calming activities I read about?  Because that gives me too much time to mull over the unsolvable problems.  As long as I keep busy, I can concentrate on problems that I CAN solve.  Dirty laundry gets clean, dry, folded, put away.  Chipping away the permafrost in the freezer is rewarding.  That ice saw the fury of my putty knife, and I chopped at it for all I was worth.  I need problems that can be solved.  I have too many – too many really BIG problems – that have no solutions.

It’s really ugly inside my head right now.  Seeing happy people, or reading about pleasant things that other families do together, or wondering for the gazillionth time what it must be like to just live casually, taking your kids to see their siblings play ball instead of having to scope out sitters a month ahead of time…all those things literally bring tears to my eyes.  Why?  Why can I not accept that this is it, that it’s not fair and them’s the breaks?  The sorrow lingers and twists and burrows into everything.  Nothing is safe.  When Stephen is quiet, my body still reacts to every sound.  I can’t sleep anymore – I wake constantly from dreams I can’t remember, but that bring me to wakefulness with a start, hearing sounds that aren’t there. 

I know I’m going to upset some people with what I’m going to say next.  I may alienate a few of my small number of readers, but I just can’t hold it in.  I cannot accept it when people start telling me how “special” we must be, how there’s a “special place in heaven for mothers like you,” or, the worst…  “God has his timing and things are going to work!  He’s there for you!”  I’m sorry.  I just can’t hear that any more.  Life for my baby boy, who didn’t ask for any of this hell, for me, for my family…it can be awful.  It is often hellish and miserable. It has been this way, at varying degrees of intensity, for ten years.  It promises to continue in a similar fashion.  And I just can’t stand to hear that stuff any more.  I need help NOW.  I’ve needed help for years, and it rarely comes.  People offer help, then forget as they go about their lives.  It’s expensive to have a kid like Stephen – diapers alone are outrageous.  My 76 year old mother is our only real backup.  What happens when she’s no longer able to help?  These and other questions make it nearly impossible for me to believe that God – whoever or whatever that means – is just hanging out up there, waiting for…what?  For me to ask?  I’ve begged, pleaded, prayed…  For me to “give up control”?  I never had it to begin with.  For us to learn some vital lesson? 

So there it is, unvarnished.  Ringing of honesty?  Too loudly, perhaps.  But as before, it was get it out or risk exploding.