Maybe

I woke up feeling unsettled today and the morning has continued to follow a downhill spiral.

Maybe it was because I went to bed feeling down – I’d said something that wasn’t intended to be hurtful to David but came across that way.  I get so frustrated with myself for rarely thinking carefully before I speak.  I cause myself untold problems because of this propensity.  Apparently, some people don’t choose to vocalize their every waking thought.  Who knew?  <sigh>

Maybe it was because Kerry got irritated due to these factors:

1. He was running late and I had only tried to wake him up 3 times.  Gah!  What is my problem?
2. His hair was not doing its flip-thing properly.  He said, and I quote, “I should always dry my hair before I go to bed at night.”  Umm…and how many times did I ask him last night if he wanted a little help drying his hair?  Twice.  He of course said, “No,” with that mildly irritated scorn that 13 year old boys have mastered.

(To Stephen’s credit, he was lovely and sweet and happy this morning.  Thankfully.)

Maybe it was because I tried to do too much before leaving for work (my fault, but I love to come home to made-up beds).

Maybe it was because after I finally got on the road the lady in front of me started moving when the light turned green then inexplicably slammed on her brakes instead of continuing to turn right.  No cars coming.  No emergency vehicles coming.  No small children wandering in the street.  I didn’t hit her, thankfully, but did this cause me to slosh coffee all over?  Oh, yes.  Yes it did.  Did I have a napkin?  No.  No I did not.  Did I dig a used paper towel (used for what?) out of the side pocket of the car door and clean it up?  You bet.

Maybe, just maybe, it was because I realized I had to get gas, that cute little gas icon mocking me as I contemplated trying to make it to work without getting gas (quickly surmising that with the morning I was having, running out of gas would NOT be a good thing – like it ever is?).  Or perhaps the fact that it took approximately 47 minutes (give or take) to fill up my car because the pump kept clicking off after 0.000032 gallons went into the tank.  *squeeze pump*  *CLICK* *pump, pump, pump* *CLICK!!!*  Repeat sixty-two times and you’ve got it.  ARGH.

Maybe it was because there was a record number of idiots who should have never been given drivers licenses on I-65 this morning.  You know, those people who whip around you like they’re on the vice squad and involved in a chase, only to find out that the cars in this lane are at a standstill just like the other two lanes?  And somewhere down 65 from my exit there must’ve been a collision of two of those model drivers, and it slowed down everything, and I was running late already from having to get gas…

Maybe it was because I dragged myself into the office with my various bags, purse, lunch, etc. and accidentally bumped someone.  I quickly said, “Oh, sorry!” only to be fixed with a glare, eyerolling, and a sort of “hmmppphhh!” kind of noise.  I barely brushed them!  Remember the old “excuse me for living, the graveyard’s full!”?  I should’ve yelled that, really loudly.  Don’t you think?

Maybe, possibly, it was because when I finally stumbled to my desk and got my computer going, I had an email from my bank with this subject line: “Helpful Ways to Avoid Overdrafts.”  Oh, well, here we go.  Within this email I’m going to find some solid advice.  I can just tell.  I’ll bet I can even guess one of the suggestions: “Keep plenty of money in your account.  This will keep your balance positive and insure no more fees for overdrafts!”  Double argh. 

Well, it wasn’t quite that bad, but it did start off with a bit of chiding:

We realize that it's not always easy to keep track of your spending [HA!] and the exact balance in your checking account [are you kidding? it’s easy – Z-E-R-O] — and Regions wants you to know that we're here to help you maintain financial control [awwww!  you guys are so sweet!]. Our records indicate that you have incurred overdraft fees several times over the last year. 

Oh, really?  How nice of you to notice.  “Several times”?  My OD fees alone have probably financed some CEO’s last vacation to Aruba.

Then it goes on to give me several options about tying my account to a savings or money market account (excuse me while I laugh uproariously) or to a Regions credit card (excuse me…more laughing).

So, eight “maybe’s” later – I think that at the root of it all is that I am just plain old tired.  Tired of being “strong.”  Tired of being “special.”  Tired of astounding people who “just don’t know how you do it.”  (News flash – we DON’T.  We almost always feel worn out, or worried or isolated or misunderstood.) Tired of rarely having a cogent thought.  Tired of not remembering what it’s like to be normal, to have a normal life, friends, social events, of being so worn out at the end of the day that I don’t have the energy to do anything beyond what has to be done.  Tired of watching my husband struggle to deal with things that are out of his control, yet impact him at every turn – with no one to listen or understand or care but me.  We try.  We try so hard to stay positive, to look for the little things, to smile.  But sometimes it just doesn’t work anymore.

So.  There.  BLEAAAGH to this day. 

“I think I’ll move to Australia.”

*For the uninitiated among you who haven’t read the original book which happens to be about Alexander’s Terrible, Horrible, No Good, Very Bad Day – go, find it, read it, and laugh.  It’s a classic.

**Pssst.  Thanks for letting me vent.

Like pulling teeth

Going to the dentist isn’t anyone’s favorite activity, I suppose.  Stephen isn’t fond of it.  Over the years I’ve tried a variety of dental situations: when he was small and “holdable” I took him to a dentist that would give him light sedation (Versed) by putting the medicine in his nose.  Yeah, it sounds bad but it worked – and he couldn’t spit it out.  Anyway, that went fairly well back in the day.  He would get kind of drunky and I could then hold him still enough (usually by sort of sitting on him) to get his teeth cleaned and checked.

Cue a growth spurt.  That dentist was only authorized to dispense so much Versed, and before long, that smallish dose didn’t work anymore.

So, I found out about the Sparks Dental Clinic at UAB, where they see special needs patients.  We started out slow, trying to acclimate Stephen to the dentist, hoping for the kind of step-wise success we’ve seen over the years with haircuts.  I did social stories and pictures, and slowly Stephen got a little more used to going into the exam room, and with much wheedling and coaxing and dental students literally on the floor, upside-down, getting glimpses of his teeth, we “went to the dentist.”  This pseudo-dental care was working well enough, I guess – I kept telling myself that I’d keep an eye out for problems (a cavity or somesuch) and IF something happened, well, the Sparks Clinic folks assured me on more than one occasion that they’d just “have to handle it.”

Uh huh.

Perhaps, looking back, I should’ve been suspicious on our very first visit to Sparks, when Stephen refused to go from the waiting room to the exam room, and the staff stood there and watched me struggle to half carry, half drag my large child, that maybe that whole “we help special needs families” claim wasn’t all it was cracked up to be.

But anyway, as long as Stephen wasn’t having dental problems (that I could see) I kept trying their easy-does-it approach.  Every few months we’d go through the motions.

Until about a month ago, when I noticed that Stephen’s left canine adult tooth was coming in, and the corresponding baby tooth wasn’t loosening up as others had done.  He’d had a few baby teeth that lingered after the adult teeth started coming in, but literally within days of the eruption of the adult tooth, the baby one would give up and come out.

So, I called Sparks to tell them that it seemed we had a problem that was going to need taking care of, as they’d promised me repeatedly that they could handle.  They suggested oral sedation.  After a couple of weeks of back and forth phone calls, and even a doctor visit, we couldn’t agree on a good choice for oral sedation that would give us the best chance of success.  Stephen doesn’t respond well to being forced to take meds, they often have the opposite effect intended, and then he refuses to take his nighttime meds because he’s suspicious.  It’s a slippery slope.  At one point I was facing having to give Stephen an injection MYSELF, and hope that it would calm him.

As I’d observed on prior visits, Sparks does have some papoose boards for restraining patients.  In case you don’t know what those look like, here’s a charming artist’s rendering of a papoose.  It’s a padded board with attached velcro/fabric “wings” that wrap around and hold snugly.

That child looks blissfully content, possibly even asleep. 

I had seen papooses at Sparks, but we never had a reason to use one…yet.  I had pretty much decided that we were going to have to convince someone to agree to putting Stephen to sleep to get this tooth out, and the Sparks folks said that they categorically did NOT do general sedation.  I did some research and found that UAB Hospital’s Dental School had a pediatric clinic – the website said that they handled “difficult” cases, and often referred children for general sedation if the situation warranted.  I made phone calls, talked to a very nice lady who told me to bring Stephen and that she was almost sure they could help, and if they couldn’t, well, they’d refer us to an oral surgeon.  The lady even mentioned papooses and she said, “We’ll help you!”

Music to these old ears, let me tell you.  As the parent of a very special kid, there is nothing like hearing someone who is not related to you and therefore not obligated say, “I’ll help you.” 

So, the weeks passed with much trepidation and fluttering of stomach, and when the day arrived I got Stephen to his appointment, we waited half of forever, and then we were called back.  We met with a very petite student dentist with a soft Chinese accent who asked me the standard questions and then said, “Well, let’s see about getting that tooth out.”  She led us back through a maze of dental chairs and said, “Okay, Stephen, have a seat.”

You might have difficulty imagining the dumbfounded look at my face at this point.  Other staff members gathered and the litany began:

“Stephen!  Here’s a little truck!  Now have a seat!”  “Stephen, look at this mirror!  We’re going to brush your teeth now!  Sit down.” “Hey, Stephen, want a sticker?”

I stood there for a few minutes and then finally said, “I went INTO DETAIL over the phone when I made this appointment about how difficult this was going to be.  He is NOT going to fall for any of those tricks.  He is terrified.  What about the papoose board?”

Muttering and shuffling of feet.  Glances at each other.  Someone said, “Well, get the release so she can sign it….Mom, are you WILLING to sign a release?”

AAAAGGGGHHHHHH….  “Give me the paper.  I was willing to sign it 20 minutes ago.  I TOLD everyone beforehand he was going to have to be restrained.  I just NEED HELP.”

I tried to lead Stephen back to where the board was now set up.  He went to the floor.  Finally, with the help of three students, we picked him up and carried him to the board.  A very brief struggle later, Stephen was tucked peacefully and safely into the papoose.  It’s not easy to see your child trussed up, at least at first, but while he fussed a little, and wiggled a little, overall…HE WAS FINE.  He calmed down.  David had suspected that he might feel oddly comforted by the pressure, and I believe he was.  It isn’t the answer for everyone, but I was so thankful that these contraptions existed at that moment.  Stephen’s teeth got a thorough cleaning, they were able to see that he has no cavities, they numbed his gums and pulled his tooth…it went unbelievably well.  I was in tears – relieved, a bit sad at the overall situation, but mostly relieved.  And I kept thinking…These people HELPED me.  Now, I can bring him here, get him on the board, and we can take excellent care of his teeth!  I was so happy.  A problem, solved.  Love it.  I kept thanking everyone, over and over, tears of relief on my face.  I kept saying, “The people at Sparks wouldn’t help me like this!  They refused!” and the UAB folks said, “Huh…but they’re specifically aimed at helping special needs people.”  I told them that’s what they say, but… “That’s why I’m here!  You guys told me you’d help!”

Then…as we gathered ourselves to leave, someone rejoined the group to say, “Oh, we called Sparks.  It turns out that a while back, an adult patient who was being restrained got loose and kicked a staff member.  So now, their policy is that the caregiver has to do the restraining.”

That’s the policy of the Special Needs Clinic?  I shook my head.  “Well, that’s counterintuitive, isn’t it?”  I was so happy with these UAB folks, and we were all buddies, just having a chat as we walked out of the clinic.  “I mean, if someone needs a papoose to begin with, it sort of goes without saying that some assistance is going to be needed, right?  Wow, that’s crazy.”

We rode down in the elevator to check out at the desk.  As we approached, the dental student who had taken care of Stephen said, “So, he doesn’t need to eat or drink for 30 minutes because of the fluoride treatment.  He shouldn’t have any bleeding from the extraction.  So we are requesting that for his next routine appointment….he’ll need to be seen at Sparks.”  And we arrived at the checkout desk.

I had my dumbfounded look on again.  “But…you all just saw that the papoose is the KEY for Stephen!  And at Sparks, they won’t help with that!  It took FOUR people to get him into it…  How are we supposed to manage that?”

She avoided my eyes, “Yes, well…at Sparks they are set up to have the time and resources to…”

“But…you JUST saw what was needed for him!  And you’re telling me they won’t DO that there!”

“I’m sorry but we don’t have the time or staff resources to see Stephen on a regular basis.”  At this point the receptionist chirruped, “So, we’ll see Stephen back in six months?”  The student muttered, “Ummm…no, we’re referring him to Sparks,” to which the receptionist bleated, “Oh, Sparks!!!  Great!  So, mom, what else can we do for you today?”

I was in shock.  I felt like I’d been handed a million dollars, then had it snatched away.  Someone had solved one of my problems, then taken the solution back.  You just don’t DO that to people so desperate for help. I was in tears again, but these were born of frustration and anger.

I summoned up as much gumption as my depleted resources would allow, and said, “No, there’s nothing else you can do.  I appreciate what you all did today, but knowing that we aren’t welcome here again is very hurtful and frankly it makes me angry.”

Receptionist: “Oh, it’s not that he’s not WELCOME…”  Dental student: “No, we want to help…but…”

I looked at them levelly.  Neither of them could finish.  Exactly.  No answers were possible.  I understand that nobody who works with difficult patients wants to be kicked or scratched or head-butted by those patients.  But when a clinic advertises a certain kind of help, putting unrealistic limitations on that help is downright cruel to families who cannot manage alone.

So.  The tooth is out.  Stephen’s teeth are clean.  We know the papoose is the key.  But my heart is bruised.  I was shown compassion and understanding, I relaxed and felt thankful, then me and my little guy were unceremoniously shown the door with the admonition not to return.  Not a great feeling.

I’m going to keep fighting.  I’m going to get in touch with the Dean of the School of Dentistry.  I’ll write letters and make phone calls and I’ll figure out something.  I’m trying to glean the positives and move on, but there’s nothing like being taken to the top of the mountain…then pushed down the other side.

A Really Useful Engine

Although I seem to have gotten up on the wrong side of the proverbial bed this morning…although I wasn’t in the best mood due to life’s little foibles and frustrations…although I chose the exact wrong time to try to discuss a thorny issue with my teenager (earning a painful criticism from my husband to boot)…

My sweet little Stephen was in a bright and happy mood this morning, cheerful and smiling from the moment his eyes opened.  He laughed and uttered his trademark “digga digga” sound, which is code for “all is right in my world,” as he danced around the living room waiting for his bus.

Needless to say, it’s always a good and joyful thing for Stephen to start the day off thusly.  And as I sit here in my cubicle, trying feebly to get some work done, I decided that I’d try to relate something quite interesting that David noticed a while back.  It’s encouraging and a little bittersweet, and it bears repeating here.

I’ve mentioned many times the love Stephen has for Thomas the Tank Engine and his friends.  This love of Thomas is apparently very common amongst kids with autism – the movement, the repetition, the sing-songy words and phrases.  Stephen will often get on YouTube, find some favorite Thomas videos, and for long stretches of time he will rewind and play the same sentences over and over and over and over: “’Ohhh,’ screamed the cars. ‘Grrrrr,’ growled Diesel, and he scuttled away to sulk in the shed.”  We’re talking hundreds of repetitions of this section of video.  Stephen can look away from the monitor and purely by feel, with a flick of the mouse button, he can pinpoint the spot multiple times without fail.  But what David noticed was that Stephen will play it a few times, then he will repeat the phrases.  Sure, it’s in “Stephen-ese,” but when you hear the video right before Stephen speaks, you can tell he’s repeating it.  Thomas’ Custom Speech Therapy Services, available right in your home, for the low, low price of an internet connection.

As if that weren’t helpful enough, we’ve also noticed that Stephen is trying to use the phrases he’s learning as a means to really communicate.

In the middle of a recent tantrum over a choppy internet connection, as he emitted his squeals and screams, Stephen was unmistakably saying, “Help! Help!  I can’t stop.  I CAN’T STOP!”  Yes, sure, in the video it’s James or Percy, out of control on the tracks with runaway coaches…but…  Stephen has now on more than one occasion used these words when he’s having a hard time.  Coincidence?

Another time we were in the car in the midst of a thunderstorm.  It started hailing.  The noise was loud, strange, and totally unexpected.  Stephen covered his ears and said, “Whatever is HAPPENING?”  Thomas says that, I think, when he encounters something on the tracks.  Just a fluke?

Just this past Saturday, again with internet problems, Stephen said, “Oh, no!  I’m in trouble!”  Yes, another quote from a video…but…is that ALL it is?

We are inclined to think that’s NOT all it is.  Somehow Stephen is learning, through these videos and books, that those phrases convey certain things, and it seems to help him to use those same phrases to try to communicate with us.  Frankly, we’ll take it.  We are used to trading bits of dialogue with him just for fun, so why not use the phrases he knows and loves to try to help him understand?  I tried an experiment on Saturday.  He was cranky and agitated about something, and I looked him in the eye and said, “All right, don’t fuss!  All right, don’t fuss!” just like Annie and Clarabel say to Thomas.

You know what?

He stopped.  Just for a little bit, but he DID stop fussing.  As with so many other parts of our life, we’ll just roll with this and see where it goes.  In case you were wondering, though?  We can confirm that Thomas IS a really useful engine. 

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. 

What really matters

I’m having that “you haven’t posted in eons and you expect people to take you seriously as a writer?” feeling.

In some ways, the fact that I haven’t been driven to post should tell you one of two things:

1. Things are going so smoothly that I just haven’t had the urge to vent before my brain explodes, or;
2. Things are so bad that my brain DID explode, and I’m now coming to you live from the laughing academy.

I’m happy to inform you that “1” is more in line with the truth than “2,” but it IS only early June.  Check back with me mid-July.

Thanks to the fact that Stephen’s teacher Heather is helping us by keeping Stephen a few mornings a week, Stephen has been fairly happy and even-keeled since school ended in late May.  He loves Heather and wears a permanent grin when he realizes he’s headed to her house in the mornings.  Afternoons have been manageable….props to the good folks at Apple and their iPad, and to the magical, wonderful, wacky world of YouTube, where people upload Thomas videos, looped versions of the 20th Century Fox fanfare, and various other kid videos backwards.  Forgive me, but it’s an autistic kid’s paradise.

We’ve had some moments, though. 

Like the afternoon Stephen got hold of the index card box where I store all of our laminated pictures for his schedule…see, I stick my head in the sand way too often, and it hadn’t sunk in that my baby was plenty tall enough to reach the top shelf in the cabinet.  So, before I got home from work, he got the box, scanned through it, and found the picture I’d made for “birthday.”  He got David by the hand, and trotted to his weekly schedule, whereupon he decided that Saturday was the perfect day for “open.”  So, when I got home, I decided to sneakily (I thought) take that picture off – because it’s not like you can just wrap presents and open them on a whim – and hope that we could plan something else that would be fun.

Right.

He was so unhappy.  It is a classic autism conundrum and one we have yet to solve.  See, we counted it a triumph when we began to be able to plan for a week in advance, putting a picture of McDonald’s on Friday, and Stephen being okay with that, even on Monday.  He counts through the days, each day getting one step closer to the desired place or event.  Sometimes we’ve put “mall,” or “bookstore,” or “doughnuts,” or whatever, and he can see that something fun is on the way.  So in his mind, anything in that box was fair game, and damn it, he wanted to “OPEN” on Saturday.  To have that velcro-ed picture ripped away must have been excruciating for him and his logic.  Well, long story short, we got through it, after a long time of crying and asking and asking and crying. (And yes, I did get some sense and have now stored the off-limits photos, like birthdays and Christmas and so forth in a separate location.)

Then there was this past Saturday. 

David had figured out through a complicated series of events that Stephen wanted to “open” (buy) a DVD of “The Wizard of Oz.”  That, we could do.  We printed out a small picture of the DVD cover, and we put THAT on Saturday.  So we had our day planned, and things were okay.  To make it even more special, Kerry decided to go along with me and Stephen to run our errands.  (The fact that I promised Kerry a CD he has long been asking for had nothing to do with his choice to accompany us, I’m quite sure.)  Things went along fairly well till we got to the grocery store.  Saturday was a bit windy and rainy in our area, and as we were making our way up to the checkout, the lights in Publix went out.

My heart just sped up, remembering.

So, as the emergency lights came on, dimly lighting the store, we continued, but Stephen was in meltdown mode.  This was DIFFERENT and therefore not good.  As we got to the register he continued to cry.  I looked at Kerry’s face and he was stoic but glancing around to see who was watching.  He finally convinced me to let him take Stephen out to the car.  I said, “But I don’t want you to have to sit out there with him crying.”  His reply? “That’s better than him crying in here, mom.”  So, they went.  I waited till the lady in front of me redeemed her 47 coupons, each of which had to be entered by hand because the scan-thingy wasn’t working.  I finally made it to the car, loaded up, and we headed for our last stop, Burger King.

Stephen had calmed down when he realized we were on the way.  I was still a bit shaky, and Kerry patted my shoulder.  “You okay?”  He is a teenager, through and through, but inside him beats a very compassionate heart.  I was just getting to the point of relief as we pulled up to the ordering speaker. 

“I’m sorry.  We’re closed.”

No….

“Why?”

“The power’s been out.  We’ll be serving again in 30 minutes.”

Well, it might as well be three MILLION.  (extra points if you can place that quote)

So, we drove away from Burger King.  I flew like the proverbial bat to the interstate, flew down the road, all the while tossing words over my shoulder: “We’re still going to Burger King!  We’re going to another Burger King!  That one was…broken!”  Kerry kept trying to calm him too.  We finally made it to another store, somehow got the food (I had to repeat the order three times because Stephen was screaming so loud) and started home.  And somehow, suddenly, he was fine.  It was over.

Throughout the evening, Kerry came to me a few more times, just to see if I was okay.  I kept looking at him – this tall (taller than me) handsome young man with the deep blue eyes and the ready smile, this boy becoming a man before my eyes, who exasperates me when he seems to forget everything but his own name, who plays too much Xbox for my liking…I looked at him and knew, as I’ve known since he was just a little guy, that he is something special.  His heart is sensitive and open, and I believe he will do great things. 

I wish we could be like other families.  I wish we had yearly vacations, instead of NEVER having vacations.  I wish Kerry could talk about his favorite rides at Disney or Universal, or his favorite thing to do at the beach…I wish we could be spontaneous and spur of the moment, and that his little brother was like other little brothers.  I wish all of these things…but I can’t make them come true.  I have to believe, in spite of all that, that our family is going to make it.  Kerry is learning, among other things I hope, that when you love someone, you take care of them in the way they need caring…that when life gets hard, you push through…that listening to everyone talk about Disney or skiing or whatever, while painful, doesn’t mean that you’ll never get to have fun and go on trips…and have a happy life.

Because in the midst of my step-taking (and yes, I’m on steps 6/7 and we’ll go into that another time) and my fretting about all the things I’m so good at fretting about and my daily search for satisfaction in a job that offers very little…like all mothers all over the planet, I want my children to have happy lives.  I don’t accomplish everything I want to during the course of a day and I make countless mistakes.  Some days I get way too caught up in what we don’t have, or what we can’t do, or how hard things can be.  But, when I go into a coma fall asleep at night, there’s peace in my heart because if nothing else, I know I’m trying instead of giving up, to help the boys get there, each of them in his own way.

In his shoes

Wednesday - Today I’m writing from an especially emotional place.  My heart, which could never be called tough by any stretch of the imagination, is about as tender as it can get as of the writing of this post.  It’s raw and fragile and quivering.

This afternoon, David and I snuck into Stephen’s school (that sounds bad, but we didn’t want him to see us and think it was time to go) and, in the nick of time, got to see Stephen presented with an award for walking over 80 miles during the school year in P.E.  Only five 5th graders earned this award – that our baby is one of them is certainly cause for celebration.  And for heartbreak.  And tears…

In these shoes, he walked around the track, holding the hands of those entrusted with his care and instruction.  Not always willingly (at first) but with determination, he walked.  He wore holes in his shoes, step after step.  He has trekked through the halls of his school, met with constant smiles and hugs because that is what Stephen brings out in people.  He has skipped, jumped, and laughed in those shoes – surrounded by adults and children alike, all offering unwavering support, kindness, and love. 

 

Stephen getting his PE award

In those battered shoes, he walked to the podium today to get his medal, not understanding the applause, not full of pride for his achievement, but smiling because his beloved Heather was with him, guiding him and loving him as she’s done for three years. 

As David and I watched him, I experienced such a rush of emotions, I could barely stand.  My sweet little man, walking with the people who have cared for him so sweetly…amidst a sea of kids who have grown up with him, and who have shared their lives with him in the best ways they could…  My heart swelled as I watched him walk, fingers in his ears to block out some of the sensory information.  In an instant, I thought of this innocent soul, plodding along in his bulky pull-up, so very different than the kids surrounding him.  I try to focus on the little pleasant things Stephen does, and his smile…but then there are times when the sorrow just washes over me, and I have to just let it flow.  He will never really know what happened on this day, but I will never forget watching him, or the smile on his face as he walked back to his seat.  In his own way, he felt special…and not in a “special needs” kind of way either.

So, in those ragged, worn out shoes, he walks through his life – comprehending very little about the world around him, at times outraged by the sometimes nonsensical nature of his environment, dependent on routine, difficult to deal with…exasperating, funny, exhausting, precious.  In these shoes, he dances and hops and twirls – laughing that belly laugh that warms my heart…

Thursday - Most posts I knock out in an hour or so, but this one is carrying over into the next day.  Today is Stephen’s last day at his school, and I’m just as teary and emotional as I was yesterday – or more so.  At this school he has been so happy, and so loved.  He won’t be going on to the school where his brother will be in 8th grade in the fall – they don’t have an autism unit and so Stephen is going to another middle school…new kids, new faces, new routines for all of us. 

Right now, as I look at the clock, he has about another hour at his beloved school…and he doesn’t know today is the last day he’ll be there.  He walked in this morning as joyfully as he has nearly every morning for 3 years…here you see him going across the crosswalk.  And that gentleman you see is Mr. Hughes…but Stephen calls him “Stop Sign.”  He’s nothing if not practical.

In my heart, I know that Stephen will probably do just fine at his new school, and that everyone will fall in love with him, just as they did at his old school.

And they have loved him.  So many precious people who have gone above and beyond what was required, and I am grateful beyond words for the way they walked beside my baby – literally and figuratively.

Stephen and “Ponder,” and with his sweet teacher for all three years, Miss Heather.

Stephen’s steps may never take him far from home.  He’ll always need someone walking beside him, watching over him as he follows the path available to him.  He is surrounded by people who love him.  We grit our teeth and get through the hard times (when going through hell, you know, you keep going) and we surrender to the abandon of laughter without reason.  As old-fashioned and clichéd as it sounds, sometimes when Stephen’s really pushing the limits of my patience, it really does help to think of how it must be to walk in his shoes…

And then my heart grows calm, and my love for him grows larger, and we keep walking.

Working at Perfekt

For the last few days, I’ve been working on Step 4, which cleverly leads to Step 5.

• Make a searching and fearless moral inventory of ourselves
• Admit to God (there HE is again), ourselves, and another human being the exact nature of our wrongs.

No big deal, right?

Yeah.  I’ve been dreading these buggers since I first saw them, sniveling and cowering down the page from the quite helpful and good-feeling-generating Steps 1-3.  If there’s anything I am most assuredly NOT good at, it’s looking honestly at myself, with no filters in place, finding some of that dark stuff that doesn’t generate the good feelings, and then…admitting to HP (that’s “Higher Power.”  Or Harry Potter, depending on the day), myself (who?) and…gulp…another human being when I’ve made a teensy error in judgment.

The workbook I have gave a template of sorts that could be used to make a chart for the moral inventory, along with some pre-printed behaviors, actions, thoughts, etc. that might spark some searching and fearless…searching, I suppose.  And if there’s anything I love, it’s making charts and using my favorite pen to fill them in.  So far so good.  Then, I started getting into the meat of the thing.  If taken seriously, looking at oneself with this kind of scrutiny feels uncomfortable at best, horrifying at worst.

Now, I’m afraid that I’m not quite transparent enough to list all my foibles here for general consumption.  Let’s just say that I’m facing up to some things about myself and my behaviors that range from embarrassing to gut-wrenching in intensity.  I’m way too dependent on others for establishing my value as a human being.  I’ve gotten a lot of mileage out of the victim/martyr complex – I’ve mentioned that here before.  That one’s tricky, because, yeah…autism happened and it sucks.  But I digress.  I have way too many crazy kinds of “beliefs” about myself that don’t really bear up under factual examination – but the thing about beliefs is that sometimes you have some that don’t make any sense at all, and yet…you still act on them as if they’re law.  I’m finding it’s okay to question them. 

I could go on, but I’ll spare all of us from my laundry list of crap.  Part of the process of the inventory is not only to enumerate these things, but also to look for ways they manifest in your life, and to assign a number symbolizing the level of pain that particular thing has caused.  In looking over my list, I can see why I’ve often felt burdened, weighed down, and worthless.  My scores are off the charts.  Of course.

Which brings me to step 5.  In my own way, I’ve been confessing this stuff to HP, to David, to friends, to therapists – anyone willing to listen (and some who were clearly cornered and couldn’t get away) – for years.  I’ve beaten myself up, sworn to change, blah blah blah…and then settled right back in.  Sure, there ARE some really and truly painful things I’ve done, some that took years to work their way to the surface – but in my heart I believe I have admitted those to the relevant parties and also to my mental health professional.  I think I’m covered in the “admittance of wrongs” department for the most part.  The larger point here, for me, is that I have often tried to hide my wrongs from myself, somehow perpetuating the very notion that I am still working on being perfect.  How does a person live for nearly 39 years and still think that’s POSSIBLE, even in the remotest stretches of the mind?

Denial is a powerful thing, and I have ridden that wave as far as it’ll go.  I’m so very imperfect.  I’m broken and backwards and mixed up – but SO IS EVERYONE ELSE.  Even those people who seem to have it all, don’t.  Oh, they may have stuff I don’t, but then I have stuff they don’t.  It takes all kinds, right?  The great irony here is that people like me who have persisted in gazing longingly at the model of perfection mess up 84% more than people who just LIVE.

(I made up that statistic.  I did read somewhere that perfectionists actually make MORE mistakes, but I can’t remember where.)

It’s funny.  I originally named this post “Step OFF” (homage to Seinfeld there) because I was kind of frustrated with these steps.  As I’ve written these words, though, I’m seeing things a bit differently.  It’s good to “come clean” to myself, and to recognize the futile nature of trying to attain perfection.  That realization, along with the tools of steps 1-3, help me to feel as if the escalator has moved ever so slightly in an upward direction.  So, I changed the title – credit to Geddy Lee for this one.

Working at perfekt

Got me down on my knees

Success to failure

Just a matter of degrees

*Note: thanks and admiration to my dear friend Jim, who made my snazzy new blog header. You, sir, ROCK. Thank you.

Paying the price

Because I’m a glutton for punishment concerned parent who wants to stay informed about things, I subscribe to a Google “autism alert.” It’s a daily email that collects stories related to autism and gives you links to conveniently click ‘n read.

Most days, I give it a scan – every few days I’ll click on a story if it sparks my interest.

And then, there are days like today, when I saw this:

There’s so much to take in, just from the blurb. You have to take it horror by horror. Mother kills son. Mother kills autistic son. Mother strangles her severely autistic son. So she could get rest. She had marital difficulties.

Okay, let me say this right up front, lest I come across as completely morally superior. There’s a part of this that I understand.

Read that again. I understand. To a point. Having a severely autistic child is horrible at times. I’ve written enough here that most of you have at least a general idea. When it’s bad, it can be very, very bad. I know what it’s like to think of desperate measures. I believe I once shared a story about driving Stephen to school while he grabbed handfuls of my hair and yanked with all his might, screaming unintelligibly, and about how I kept thinking that maybe I’d just floor it and head for the next concrete block wall I saw… The mom in this story tried to kill herself but didn't succeed.

So, I get that things get so bleak and so dark and so heartrendingly excruciating that you find yourself wishing it would all go away.

There’s a line, though, isn’t there? As parents we all toe that line from time to time – even parents with “regular” kids. But it’s about reaching inside yourself and stopping before you settle in on the other side of that line. Because it’s a one-way street over that line…you spend too long over there and you’re not coming back.

Here’s where my soul absolutely ached, though, as I read through the story. In one letter the police found in the hotel room, the mom had written: “It is funny. He was laughing when I was strangling him. That is when I knew he was happy. I had to do it because now no one can point fingers at him.”

Dear God. That child, completely unaware, laughed while the person entrusted with his care ended his life. That innocent spirit was so disconnected from reality that he didn’t even know to fight to save his own life. And the mother saw that as an acceptance, as validation of her actions. In my mind I am in that room, listening to the otherworldly laughter that we hear from Stephen all the time. I am chilled to the bone.

So while I understand the pressures, the insanity, the misery, and the utter desolation…children like this boy – the very same age as my own son – who cannot comprehend the world around them must be cared for with the most compassion we can muster. It isn’t easy. It’s rarely rewarding. It’s just damned hard. You don’t get to rest sometimes. You DO have marital problems. But caring for those who cannot care for themselves constitutes a higher calling. We don’t care for them because they ask for help, because many of them have no voice. We don’t care for them because in the end it’s all worthwhile – sometimes it falls short. We don’t love them because they love us.

My son was born into my life and the life of my family, and we are charged with his well-being. That’s the beginning and the end. We may not always be able to provide his care personally; it’s hard to know that now. But, as hard as it is and as exhausting as it can be…what we do, we do because it is right. If character is exemplified by what we do when no one else is looking, then caring for a severely autistic child even when no one is looking counts just as much.

We will pay the price, but we will not count the cost.

A failure to communicate

I’m not sure I’ve ever written mid-chaos, but if I don’t get these words out right now, I’m going to break something, or smash something.

Stephen won’t stop asking for “something to EAT,” and I am finishing the journey toward madness trying to convince him that “something to EAT” isn’t a place or a special kind of food.

I have pleaded and cajoled.  I brought him Burger King for lunch – “Look – something to eat from Burger King!”  Then we went a few more rounds, and I took him to the grocery store, the whole time saying, “All these things are foods we eat.”

He doesn’t get it.  The simple, basic concept of what this phrase means escapes him, and he cries and hits and looks bewildered, and I am going nuts here.

Just now?  I grabbed his hand, took him into the kitchen, and threw the door of the freezer open.  I pulled out garlic bread: “This is to EAT.”  Tater tots: “To EAT.”  Hot dogs: “To EAT.”  I spun over to the pantry, yanked the door open.  Went through the same routine with foods in there.  When I paused to take a breath…”something to EAT?”  I hit a shelf so hard I broke the skin on my arm.  The frustration has reached epic proportions and I am clueless.  Powerless.

Damn it all to hell.

Those steps aren’t looking all that helpful now, are they?  I’m powerless.  And where’s my Higher Power?  Not stepping in to help me? 

I just don’t see how to keep going.  I marched him down the hall, shut the door to his room, and left.  I couldn’t take it anymore.  He’ll come out, and I bet I know what he says next.

Baby steps to sanity

Remember Bob and his baby steps? Baby steps to the elevator, baby steps to four o’clock…

So apparently I’m taking baby steps on the road to recovery. I mean, sure, at times they’re steps that the tiniest little micro-baby in the world would take but…I feel the trend, in general, is upward.

In general.

I’m hovering between steps 2 and 3 on my 12-step journey. They’re related, and since these are THE GOD (AS YOU UNDERSTAND GOD) steps…yeah, I’m spinning my wheels a bit. Officially, we have:

1. I’ve come to believe that a power greater than me can restore me to sanity.

and

2. I’ve made a decision to turn my life and will over to the care of God as I understand God.

As far as God/religion/spiritual stuff is concerned, those of you who’ve read my stuff before know that on a good day I’m a seeker of sorts, intrigued by rituals and spiritual matters…on a bad day, I’m one of those doubters who just can’t quite let go of the idea of God (mainly ‘cause I’m scared of the lightning if I do). So where does that leave me on the staircase of codependency recovery?

This morning as I was meditating (which means sitting on Stephen’s bed since he migrates to the couch every night, sleepily drinking my coffee and scribbling in my journal) I came to the conclusion that I can confidently say that I DO believe in a “power greater than me.” As simplistic (naïve?) as it looks when I write it out – I believe in the transforming power of unconditional love. Is it possible to love in that way as humans? Well, probably not, but it’s a noble goal toward which to work. Anyway…how that belief ties in with my idea of God is still a bit murky, but as I’ve mentioned before, the few transcendent experiences I’ve had (mostly involving nature/landscapes/outdoors) combined with this idea about love as a powerful force is going to have to do for now. Don’t try to pin me down because I can’t get any more specific than that. (Defensive much?)

So with one foot on step 2 and the other on step 3, right now I’m pretending the steps are really an escalator, and I’m cruising along, moving upward but also staying where I am, for the moment, whilst things settle in and become a bit more…comprehensible. Loving as unconditionally as possible seems like a great place to start – and what’s more, the first person who is benefitting from this notion is ME. I’m also trying to love those around me without conditions – no expectations, no projecting of my teen self onto my teenaged son – and it really is freeing in a way. Love them as they are, and that includes yours truly. No false hopes, no unrealistic goals, and (this is vital) no condemnation for failure to be perfect.

Whew. That one hits me where I live.

Looking at #3 through my custom filter, I see “turning my life over” in this way: it brings to mind the admission from step 1 that some things (and all people) are out of my control. To some extent, what is, is. While the way we live our lives may influence people or events, ultimately, sometimes things are going to happen. We have the choice to either have a big old freak out (holding up the mirror now), or, try to breathe, get perspective, and make the best choices we can to deal with what comes, hoping that choosing a higher path will (eventually?) lead to a higher place. [How this fits in with evil things that happen to innocent children, why some people beat cancer and some don’t, why bad things happen to good people is not clear at this time, and I doubt it ever will be. Which frustrates the hell out of me.]

As I’ve come to look at this blog as a confessional of sorts, right away I’ve got to admit that last night I pretty much embodied the exact opposite of the serene, Zen being I’m espousing in the prior paragraph. After a long day in the office, pushing papers around as I try to feel some sort of meaning, I was a bit blah. A nice supper, a couple of eps of M*A*S*H, and a hot bath (during which Stephen popped in and entertained himself and me with a Blue’s Clues songfest in the mirror) later I was feeling a bit more like myself.

Then it was bedtime. I try to time Stephen’s pull-up changes so that it’s just time for a fresh one as we do our bedtime routine. This time I missed the window, and walked in to find that he had leaked onto his bedspread and top sheet. Clever gal that I am, I just whipped those two things off the bed, grabbed a nearby comforter to replace them, and patted myself on the back for being so resourceful. Stephen continued watching YouTube on his iPad, and we finished the bedtime routine. But he kept squealing in a way that only Stephen can – he grasps his hands in front of him and squeals. LOUDLY. Sometimes he gets cranky like that when he’s tired and will eventually calm down…

I went back to the living room hoping to hear the sudden silence that means he’s given up fighting and gone to sleep…only he didn’t. I finally went back in, saw he’d thrown the comforter in the floor, and somehow surmised that he was unhappy without his tucked-in sheet and bedspread. So, what to do at 10 p.m. when you can’t do laundry fast enough to fix the problem? You grab the Glade Fresh Linen spray, spritz the sheet and bedspread, and go on with your life. Sorry, folks, that’s life with autism. You spray, and go on. Putting the covers to rights helped, but still…there was squealing.

I went back to my chair, trying to relax…yet every time he let loose another cry, my muscles twitched and it felt like an electric shock. My mind ramped up…What do I do now? What next?

Then, it came to me. I knew exactly what I needed to do.

Nothing. It was out of my control at that point. I had helped him in the only ways I could, I had hugged him, loved him, and I had to let it go. I forced myself to relax, to stop anticipating his squeals, to know that it really was going to be okay. I realized, maybe for the first time, I REALLY realized that, while a few times things really have gotten difficult (stomach viruses, 3 hour tantrums, etc.) most of the time things really DO turn out okay… Well, okay in a kid-with-serious-autism kind of way.

When I finally laid my weary head on the pillow, I felt the weight of the struggle – not only the struggle to get Stephen calm, but the fight I’m waging both for and against my self. I fell asleep almost instantly and slept soundly. I’m fighting to let go, to use my energy in increasingly positive ways, to strive for a higher place – and finally, I can see that the benefits of the effort are worthwhile, and I deserve no less.

We gather together

Remember the Coke commercials where people joined hands and sang joyfully about sharing a coke and keeping the world company?

Humans are social animals, present cynic-with-low-self-esteem company excluded, and it seems that now more than ever, we are anxious to find common goals around which we can gather and celebrate.

The more whimsical and fanciful example I have would be the hoopla over last Friday’s Royal Wedding (and yes, we capitalize it…it’s just. that. important.). Leading up to the events, I honestly didn’t care. I didn’t! I’ve grown up from that 9 year old who watched in awe when Diana became a princess, dragging that impossibly long train down the aisle. Brits and their monarchy – I mean, come on! Who gives a rip?

Then, in spite of myself, I caught a glimpse of Kate’s dress when I innocently opened up a web browser. (Thanks Yahoo). And...she looked beautiful. Radiant. Classically lovely. Grace Kelly-esque. So what if I then typed in “www.bbc.com” just to see how Westminster Abbey was decorated –it was totally so I could scoff at the pomp and circumstance over those silly Brits and their figurehead royalty.

But as I watched the bride walk down the aisle, something changed. I couldn’t help myself. I didn’t want to be there milling around in the crowd waving a Union Jack, or even in the Abbey itself. I didn’t suddenly think that the Queen and all that royal stuff is a great and meaningful thing. No…I was just swept away by the beauty – a pretty, elegant young lady, a handsome prince in his uniform, beaming at his bride, British reserve be damned, the timeless glory of the Abbey, the soaring music…

And it occurred to me that I (and maybe a few million other people) are simply starved for beauty, for civility, for the ageless grace of love eternal. People gathered to celebrate this – and it ALMOST didn’t matter what they were celebrating at that point. Do some people take it a tetch too far? Of course. There are always excesses (see the commercials for the knockoff copy of the engagement ring for $19.95 – comes with a certificate of authenticity!). I decided to stop berating myself, and simply enjoy the pageantry and stop telling myself what a waste it was. Of course there are better ways to spend millions…pro football, for example, is ridiculous, but I’ll save that whole rant for another day.

As people got back to normal after all that wedding business, last night the President came on TV to tell the world that U. S. Navy Seals had killed Osama bin Laden. It’s big news, no doubt, coming years and years after the search started.

And the celebrations began…outside the White House, at Ground Zero in Manhattan, and, I presume, all around the world. Some pundits declared that bin Laden’s death would bring closure to families affected by his evil. I don’t know…closure is a funny thing. Maybe it does give comfort to think that justice has been served – but how many others are standing by to take his place? To avenge his death? Is the “war on terror” really over? These and other questions didn’t matter to the revelers of last night. People gathered, spurred to excitement by a common cause. Humans are starved for connection. These celebrants didn’t get on Facebook, by and large. If at all possible, they wanted human contact – to look into someone else’s eyes and smile, and whoop and holler.

In my own state, volunteers and donations continue to pour in for victims of last week’s monster tornadoes. It’s remarkable to see people go into action when help is REALLY needed. Think of 9/11, of Katrina. And these storms that wreaked such havoc…times like these bring out the very best in humans as they seek to connect, to soothe and comfort, to help in real ways. We have it in us to be so kind and compassionate and giving. Why does it take such devastation to bring it to the surface? Shouldn’t we live in such a way each day, striving to choose the highest choice, recognizing the divine nature of every human we meet?

But, we don’t. Wall Street tycoons steal outright, and continue on their merry way, causing a different kind of destruction and chaos… People hate each other for things that shouldn’t matter. Kids are mean to other kids – often to the point of driving a teen to suicide. This dichotomy, this duality of our nature…it confuses me, and makes me think I’m going nuts at times.

Yearning for community…it’s a big part of the human condition, and as much as I try to pretend otherwise, I want it, too. I write this blog, not only to vent and to neatly fold the thoughts from the tumbling clothes dryer of my mind, but to share. To put a piece of myself “out” there, and hope that someone else says, “Yeah…me too.” The power that’s in those two little words can’t be underestimated. “Me, too.” I understand. I feel what you’re feeling. I know.

Knowing that someone else shares your experiences eases the burden – even if they’re still IN that situation, struggling along with you. It helps to know you’re not alone. And people look for opportunities to share, both good and bad times.

When I tell you that right now I’m struggling to get my sweet son to understand that “Something To Eat” is not an actual food or name of a restaurant, that he found a button labeled “Something To Eat” in his iPad communication app and is now obsessing over “Somefing to EAT!”, that I have placed approximately 5 (at last count) sticky notes that read “Something To Eat” on various foods around the kitchen…someone out there (hello Karen!) will go…”Oh gosh…I know what you mean. I’ve been there.” And that helps. It soothes the agitation. It binds me together with other human beings.

There will always be dark nights. My soul, I imagine, will look rather weary and battle worn by the time it’s all said and done. I will still cry, and rail against the unfairness of it all. But, a little at a time, I’m learning that I’m NOT alone. And it means more to me than I can express.

(A parting note: at the age of 9 I had “Charles and Diana” paper dolls, bought at the little bookshop in my hometown. Do I hear a “Me too” out there?

No?

Oh well. I guess sometimes you’re bound to be the only one.)

Out of control

Yes, it’s official.  After 30-odd years of trying, I am finally ready to admit that there are things that are out of my control.  These things include, but aren’t limited to:

• Other people’s actions
• Other people’s reactions
• Other people’s choices
• People who have autism; namely, one adorable 11-year-old I know
• The weather

Local readers will understand just exactly why I tacked on that last one – yesterday our state was positively covered with monster tornados, literally a mile across.  Lots of people died.  The more fortunate ones kept their lives but lost homes, cars, businesses.  The really, really lucky ducks (like me ‘n mine) kept their power, kept their internet, and literally watched the tornados do their damage live and in color on the telly.  It was horrifying, and more than once, as I sat there feeling almost ashamed because I was so glad the storms were going around us, I could hardly hold back tears at the sheer power and horror and chaos wending its way across the state.  And, there was nothing I or anyone else could do to stop it.

This is really, REALLY hard for me.  Things that I can’t fix or manage or suggest my way out of?  Those things cause physical discomfort for me.  Trying to let a situation just happen requires herculean effort.  The thing is, intellectually I do understand that the things on the list above are naturally out of my control – but emotionally it’s a whole other thing entirely.  And that’s where we really live, you know…heart, soul, and gut.  I react as if I were responsible, and you would not believe the trouble that’s caused in my lifetime.

The amount of stress I’ve brought upon myself by worrying about things I couldn’t control is highly significant.  Last night, two of the five things listed above combined into a big ol’ maelstrom of STUFF…and I will admit to you that I was a mess.  The storms had the trees in our neighborhood doing the twist, and the lights would flicker just enough to make me twitch uncontrollably because WHAT IF THE POWER GOES OUT?  And/or the interwebz?  Knowing exactly how Stephen would react to either of those scenarios made me want to assume the fetal position in a dark corner.  But here’s the kicker: I worried enough for 20 people and nothing had even happened yet!  I was making myself sick because I could visualize it all happening so clearly.  Autism’ll do that to you, you know – you live through a few F-5 meltdowns, and you just don’t want to venture into that territory EVER AGAIN.

I couldn’t even enjoy the really nice meal I managed to throw together in between panic attacks.  And friends – when *I* can’t enjoy eating, it’s a big deal.  News flash: you can’t control the weather, no matter how hard you try, or how little you eat, or how piteously you wring your hands.

You can’t control an innocent little boy unable to comprehend understand why power sometimes blinks off, or why a video shows up on the computer YouTube but not the iPad YouTube, or why his teacher took a day off, or that Band-Aids really will help a boo-boo.  He lives in a country mostly created in his own mind, and I am rarely granted a visa to travel there.  Oh, I plan, and use common sense, and make some neat PECS cards complete with velcro. I do my best, but control – real control when circumstances are out of my hands?  Not a chance.

While we’re in the confessional, I might as well admit that no matter how many heartfelt speeches are spoken in love from this mother’s heart – a mother trying to be firm but kind, cool but not a “buddy” – I cannot control my 13 year old and his choice to play xbox instead of, I don’t know, reading a little Shakespeare.  I mean, yes, we make rules and we try to enforce them, but at some point you have to give up ultimate control and hope you’ve taught them well.  At least that’s what I keep telling myself (usually when I’m mid-speech about how studying hard NOW will open up so many doors for you, Kerry!).

There are other situations – professional and otherwise – in which I try too hard, and go way too far down the path of trying to “prove” myself, or make up for what I think might be perceived as shortcomings.  Pointless.  Doing my best is about as far as I need to go – anything else is a waste of time, and most definitely out of control.

So.

I admit that I am powerless over others – and my life has become unmanageable.*

*A caveat: by unmanageable I really mean that I can't continue trying to manage every single little thing, often missing managing the kind of big, important things.  That kind of unmanageable.  Because I’m compelled to tell you that I am one helluva manager, when you need something managed.  Or at least I’ll kill myself trying to manage it.  All by myself, ‘cause I’m a big girl!

You can now see how I got myself into such a predicament.

Technorati Tags: Step One,autism,control

Working the steps

Gah.  I hate all this lingo.  In Codependent No More, Beattie insists that recovery is possible by working through 12 Steps (similar to AA’s Steps) that have been personalized for recovering codependents.

I really am learning a lot about myself from this book, and feel a sense of commiseration, knowing that there are others out there like me.

[There are others.  That reads like a tagline for a new M. Night Shama-however-you-spell-it movie.]

Anyway.  While I’m finding some positive things in studying the book, I feel really weird about the whole “working the steps” thing.  I don’t know – maybe it’s just my initial resistance to change – but it all sounds kind of weird and hinky.  “No, I can’t volunteer for that!  I make my own decisions! I’m working my steps.”  Ewww.  I picture a smoke-filled room with a table in the back loaded with bad coffee and store-brand cookies, crowded with folding chairs holding people in various stages of anxiety.  I walk up to the podium.  “Hi.  I’m Michelle.  I’m codependent.”  A chorus: “Hi, Michelle.”  Ewww again.

If you’re at all familiar with the traditional pattern of the steps, you know that God is mentioned.  A lot.  Or, “God as you understand him.”  So, what if you don’t understand him?  What if you’re not sure what you think or believe?  Sometimes Beattie cleverly uses “Higher Power” as a synonym, but I’m not sure that helps me out a whole lot.  But, because I’m determined to get the hell over myself and this clingy codependent claptrap, I’m going to figure out a way to make this work. 

I have a sense of the spiritual, of the divine – sure I do.  Those moments that stand alone in time – when your heart nearly stops in reaction to beauty (have you seen a sunset in Death Valley, looking out over miles of empty hot vastness, knowing you are but a speck?  I have, and I felt closer to God/Spirit/My Higher Power at those moments)…when a child’s arms voluntarily go around your neck, their warmth and humanity elevating both of you to something more…when a mere human’s brain produces thoughts that become words in a poem, the sum total of which rises off the page and affects you…when a musician’s touch on a guitar produces melody that physically jars you to your core, and you are a different soul than before you heard it…these things and others like them convince me that there is a higher place.  Maybe that’s not how you’d explain it, or see things, or believe things.  But I think that’s okay.

So, to borrow a phrase shared with me by David (and attributed to the late Dr. Eugene Sledge), I will press on, with renewed vigah (Southern accent please), and meditate and reflect upon each step as I come to it – perhaps sharing some insights I’ve found, and perhaps not.  This soul-searching business is extremely personal, as a rule, so we’ll see how transparent I happen to be feeling.

See you in group!

(ugh…)

Technorati Tags: codependency,beauty,Higher Power

The DaVinci Code…pendency

I know, that was bad. I couldn’t help myself. However, it’s entirely apropos, corniness aside.

Have you read The DaVinci Code? I confess that I did. I enjoyed it in spite of myself. Silly conspiracy theories, digging for clues, reading the signs, interpreting codes…I was fascinated.

So: codependency. As much as I’ve grown to detest psychobabble and words that come and go in the world of psychology, this word I can’t escape. It’s me. Completely and totally me. In my 38+ years, I have done three lifetimes’ worth of searching for the reasons why I am the bundle of neuroses you see before you. It started way back when I was a tiny little neurotic, dependent on the love and support of my parents for my total existence as a human – and my parents, God love ‘em, with their baggage and issues…

So, let’s examine the parallels:

Silly conspiracy theories? Yep. It’s my parents’ fault, for expecting perfection and forbidding wandering from the path. It’s my nursery school teacher’s fault for telling me I was smart. It’s because I’m an only child. It’s because I am a klutz, but also a great dancer – how’s THAT for an oxymoron?

Digging for clues? Oh, mercy yes. Not until college and immediately after, but I did some digging. Therapists, counselors, self-help gurus, God, religion… Somewhere in there, I was going to unearth THE ANSWER and when I did it would be so appallingly obvious that I would have myself figgered out in a jif.

And along with those clues, I did some reading of signs: if the sun shines tomorrow, then all this stuff bothering me right now will be okay. If I ace this exam, then my future is secure. If I make it through this horrible experience, then I will NEVER do THAT again (drink too much, talk too much, share too much of myself)…

Worst of all, I began to see patterns. Codes, even. I studied people so closely I made Margaret Mead look like a slacker. I made some amazing discoveries:

• IF [boyfriend looks unhappy] THEN [I have done something wrong] (note: this statement is absolute and “boyfriend” is interchangeable with: “parents,” “friends,” “person at mall”)


• I do not deal with conflict well. I cringe and shrivel up inside when something contrary to what I know is introduced. Gathering data via keen observations, I created the following graph which illustrates my reaction to conflict or differing opinions:

• Overheard in many a high school/college classroom: “This essay is great; you need to cut some wordiness and add more description but overall it’s really good” - translated this means: “You suck, and you’re dumb and ugly.”


• Any bad things that befall anyone I know are all my fault – many people don’t even realize it at times but I step in with my apologies and my secret shame because in the big scheme of things I’m SURE I did something to cause it, and helpfully take responsibility for pretty much anything.


• If forty-seven things need doing to achieve a common goal, I will bust my ass doing forty-six of them, then break down, weeping, when I have to ask someone else to do the last one. Not because I’m so capable or so IN CHARGE…no, I’m just compelled to drive myself into an early grave.


• If Michelle’s [friend, loved one, co-worker] wants to talk about 2 problems, and Michelle is so busy thinking of the 47 things she must get done or be labeled a lazy bum, and simultaneously is thinking of the friend’s 2 problems plus 8 other problems other people have mentioned that are probably her fault, then how many problems are there? BONUS: Why can’t Michelle sit calmly and listen to 1 problem at a time? Why can’t she LISTEN at all without a bizarre compulsion to FIX everything? (I’m pretty sure Fibonacci sequences come into play here.)

I could go on. At some point, I probably will. I’m reading what’s considered the classic on codependency (Codependent No More by Melody Beattie – isn’t that a fine, firm, don’t-take-any-crap title?) and I’ve already met myself on about every other page. No doubt there will be a myriad of topics that compel inspire me to write.

The good news is that supposedly one can recover from this codependency business. Oh, and lest I give the wrong impression, I am not married to an alcoholic or drug addict – many people are codependent because of years of upbringing, then you add any other kinds of conflict into the mix (and we all know how THAT goes with me) and bam. You’ve got yourself a raging case of DaVinci Code-pendency.

Wish me luck.

Authenticity

I had a post all typed up, even hit “publish” on it…it was all about my struggle to eat well – or perhaps my struggle to stop eating so well – and it even had a really hilarious Jabba the Hutt reference, complete with a picture of Jabba himself.

Then a few things happened.

The Jabba picture would not load.  Period.  Big blank white space.

I didn’t have time to mess with it, so I left it, and walked out of my building to go to a meeting across campus.  And I noticed what an incredible day this is, weather-wise.  The sky is that impossible shade of blue that almost hurts your eyes.  The trees on campus looked like they’d been processed by Technicolor.  Students were walking around in their Chaco sandals and running shorts in every possible hue sold by Patagonia, and from a distance, it was like I’d stepped into a Chagall painting.

Which brings me to the third thing.  The unadulterated beauty I encountered suddenly made my self-centered food blog post seem crass and silly (in a bad way).  And I started thinking about why I blog…about why I started to blog…I had all these thoughts and feelings and needed someplace to put them, and this wonderful, free blog provided that and more.  I found a voice.  I found that I could write well, sometimes really well, and that I’d touched a few people.  The first time someone told me they cried while reading what I wrote, I was stunned and so very gratified to know that I’d managed to put my feelings out there as authentically as I could, and that people got it.

I’m not saying I regret trying out some different things here lately.  I enjoy a good laugh as much as anyone, and have struggled to hold in the giggles when I’m reading some of my favorite funny writers’ blogs while at work.  I think (mostly unconsciously) I tried to copy them.

The lesson I learned today is that this whole writing thing only works when I’m really being who I am…

And as soon as I figure that out, you’ll be the first to know.

Those WERE the Days…Weren't They?

Thanks to everyone who commented on- and off-blog about my last two entries. The reviews were mixed – some of you liked them, some…not so much.

But hey, life goes on and my struggle to find a voice continues.

This morning on the way to work I was behind someone who had a tiny little bag hanging from their rearview mirror. I have no idea what it was (air freshener, bag of garlic to ward off vampires) but I noticed it, because I notice and ruminate upon tiny, obscure details while forgetting to put the milk back in the fridge.

Anyway, the bag…

It put me in mind of some chewing gum I used to like when I was a little girl. The gum itself looked like gold nuggets, and it came in a little burlap-ish, drawstring bag. Anybody remember it?

Of course almighty Google has promptly given me a picture.

So, yes, <<< THAT gum.

In the space of mere seconds, in my mind’s eye I could see myself at age 5, holding my grandmother’s hand as we walked from her house, up one street and over half a block, to the little grocery store in town.

Three things were vividly real to me about this memory: the feel of my grandmother’s hand in mine – she would’ve been well past 70 then, and I can still feel the smooth, papery feel of her skin; the dim interior of that little shop that was only in a storefront space but somehow had everything people in town needed to bake a cake; and the fact that my grandmother used one of those little pouches to keep her money in…and she pinned it to her slip.

Do women even wear slips anymore? I’m sure to my grandmother, born in 1895, putting on a slip was as natural as putting on her dress or her shoes. It’s amazing how seeing such a small, insignificant, random thing that only a weirdo like me would even notice brought a flood of memories rushing in…my grandmother in her navy blue dress with white polka dots, money pinned in a Gold Nugget bag, white sweater over her shoulders, snow white hair in a bun on the back of her head… She died the month I turned six, and yet those images and scents and feelings are right there, you know? Right under the surface of the churning chaos of my mind…

My grandmother…her slips and housedresses and sweaters… She never wore pants in her life, I’m sure. Thinking about her naturally got me thinking about my recent obsession interest in “I Love Lucy.” When I was off work for a month, I watched the first 2 seasons on DVD (which I had picked up a couple of weeks prior for a mere $13 each) and was reminded of summers at my Aunt Mary’s, eating Campbell’s Chicken Noodle Soup on a scarred TV tray and watching Lucy followed by “Perry Mason.”

See? Those WERE the days.

Well, what I really meant in that title is that I feel some sort of nostalgia for those seemingly innocent days of the 50’s. Can you be nostalgic about something you never experienced?

I’ve often said that I was born in the wrong era. I adore vegging out happily watching Lucy re-runs: her house dresses, her aprons, her little kitchen with its plug-in percolator…her evening gowns, her tidy little hairdo, her relentless drive to get into the act… So formulaic, so predictable…and I love it. I want to be Lucy. I want Ethel to drop by unannounced, popping in the back door with her hair in a scarf: “Hi girl!”

<sigh>

But, those days are gone – and it seems like all the gentility, gracious living, and simplicity went with them. I’ll never be Lucy.

Well, maybe I could be.

But I’d be the Lucy who lit her fake nose on fire while trying to disguise myself from Bill Holden.