Bridge to Shore - Part 2

“Because Divine energy is inherent in our biological system, every thought that crosses our minds, every belief we nurture, every memory to which we cling translates into a positive or negative command to our bodies and spirits.”

Caroline Myss

I’m sure that I have some irrational fear when it comes to my children.  Who doesn’t, right?  But the problem is that my fears aren’t entirely irrational.  It’s hard to explain actually.  People often tell me, after they’ve been around me and my kids, that the behavior of my children really isn’t that bad.  And Isabel’s really isn’t that bad anymore, although I still don’t trust her entirely.  Just last week, she was pissed at her teacher after school, so she banged her head on the window of the car all the way home.  And yesterday, she walked out the front door and all the way down the block.  And if I hadn’t noticed and stopped her, she would’ve kept right on going.  These are things that come out of nowhere too.  They’re completely unpredictable.

People often to say to me, “Isabel and Cale behave pretty well, don’t they?”

Well, they say this if they haven’t been around us for an extended period of time.  And this gives me a bit of an out actually, because I can usually agree with them that Isabel does really well for the most part.  But what I’m not able to tell them is that I’ve spent nearly every second of any time we’ve ever spent around them (if Cale’s been with me, that is) in full management mode over Cale, foreseeing and preventing (or at least minimizing) melt downs that include self/other harming or the destruction of property.  I’m also not able to tell them how truly exhausting it is to be around them (with Cale) as a result, as this would be quite rude.

People invite us to their houses, and they tell me to bring my kids.  And they say that they really don’t mind my children, but then they seem to get irritated when my son actually does throw a platter of food that the host has spent a good deal of time preparing, right onto the floor, spreading food from here to hell and back, and breaking the platter, just because I got distracted by a ten second long conversation.  I mean, are you seriously irritated?  Didn’t you actually talk me into giving this a try?  And didn’t I tell you specifically what it would be like?  Did you think that I was kidding?

And this is the easy part.  The hard part is when the tantruming starts.  I mean, even the closet of my friends (along with their children) seem a little scared when my son is piercing the air with screaming that sounds as if it could be coming from someone who might actually be having his feet ripped right off of his legs, and banging his little head onto the floor, or trying to hit them and their children (and when he hits, he throws the entire weight of his body into it, other children actually go flying through the air), or throwing things at them and their children, or scratching his own skin and drawing blood, or pulling his own hair.  Of course they’re scared.  And it doesn’t seem to help much for me to say, “It’s okay, it’s okay, we’re having a perfectly normal moment here.”

It’s kind of strange actually, because even though I’m incredibly edgy and scared up until that moment, when the moment finally does come, it’s almost as if I’m able to flip a switch.  I simply turn off my emotions.  I can do it faster than the light can leave a room.  Then I gather myself together, put a peaceful look on my face, and deal with the situation in a calm, rational manner.  And do you know what I’ve noticed about this over the years?  When your child is behaving badly, people don’t actually look at your child to determine whether or not everything is okay.  Because kids are just weird.  They actually look to you.  And if you’re okay, then it doesn’t matter so much what your child is doing at that moment (even when they’re pulling their own hair out by the handful), they can stay calm too. 

I’m usually able to prevent these kinds of meltdowns from getting this bad in the first place, but what it really and truly means is NOT letting Cale get a hold of a platter of food, because he just wants to hear what kind of sound it makes when it hits the floor, that’s all.  And he hates himself for it when the platter actually breaks and people become upset with him.  And by the time he hates himself, there’s almost nothing that I can do to keep him from hurting himself or somebody else.  So for God’s sake, put the damned platters (along with anything else that you care about) where he can’t reach them to begin with.  

People often tell me that I’m being silly when I say that we can’t come over with Cale.  But when we do come, not only do I have to spend the entire time there paying attention to no one but my son (a truly exhausting endeavor in nearly any environment besides my own home), but something or someone usually gets hurt too (hopefully it’s my kid instead of yours – if given a choice, and I often find myself in the midst of a choice, I’ll save your kid before I’ll save mine, because frankly, my kid is the one choosing to behave this way and I don’t have a lot of sympathy for it anymore).  And a year ago, Cale was still too little to do much damage.  But he’s bigger now.  And he seems to have become a lot more aggressive. 

I’m getting a lot of pressure to start taking my son places again.  Can you tell?  And I really don’t know if I’m having an unhealthy reaction to it or not.  Maybe it really is Post Traumatic Stress, although I have to say that if it were up to me, these particular words would be reserved for people who have experienced real trauma.

I can see how my fears might seem irrational to the average onlooker.  But the average onlooker hasn’t had to deal repeatedly with their children trying to get themselves killed, or had to deal repeatedly with their children becoming so upset that they begin screaming and breaking things and harming themselves and/or others right in front of God and everybody because somebody, in an attempt to make them happy, put smiley face stickers on their shirts.  The average onlooker hasn’t been repeatedly pierced with looks (and sometimes words) of judgment, criticism, and sometimes actual fear, by strangers that don’t understand what’s going on.  The average onlooker hasn’t had to deal with an average, ordinary day in the lives of my children.

Any time I ever go anywhere new, whether my kids are with me or not sadly enough, I immediately analyze the environment.  It’s just automatic, I really can’t help it.  And I’m sure that every parent does it to some extent.  If the environment is open and uncontrollable (like the grocery store or the park or an unfenced yard), then I either find a way to keep Cale contained or we have to leave, because he tends to run off.  Sure, he might get distracted by something and stim for little while first.  But at any moment, he could take off.  And once he does, he doesn’t stop at all until he’s in front of a moving vehicle.  Then he stops.  Of course.

If the environment is somewhat contained and controllable, and I decide to actually stay, then the first thing I do is find the doors and determine how easily Cale (and Isabel too, because I still don’t trust her yet) could get out of them, just in case he (or she) decides to make a run for it, or in case I need to grab my children and leave very quickly.  The next thing I do is look for any objects that could be used by my children to hurt themselves or others with - the most common of which in your average doctor’s office waiting room include lamps, children’s books, magazines, large hard plastic or wooden toys that aren’t nailed down (but even small toys can be quite effective little weapons), small tables, small bookshelves if they aren’t screwed to the walls, and small chairs. 

Next, and as best as I can, I try to foresee all of the possibilities and keep everyone safe.  I rarely succeed though.  One of my children always hurts themselves or somebody else.  Just this week, I took Cale to the naturopathic clinic to see his doctor.  There were two exit doors in the waiting room on walls opposite each other.  One of them had a sign on it that read, “Not an exit,” but it didn’t appear to have an alarm on it or anything so I could’ve used it as an exit if I’d absolutely had to.

This waiting room was so quiet that you could clearly hear the faint trickle of a beautiful little water fountain (that luckily didn’t become a water weapon during this particular appointment) which sat along one wall of the room.  The receptionists were behind a half wall, cheerfully pattering away on their computer keyboards.  And one lone woman sat in a chair along the same wall that the fountain was on, reading a magazine, with a small sign near her that read, “Meditation.”

I knew that it was only a matter of moments before my son totally shattered this peaceful environment, and I seriously considered leaving with him.  But I didn’t.  We stayed.  I held Cale on my hip (he’s nearly six now, and I’m not going to be strong enough to do that for much longer) while I quickly checked us in.  Then I took Cale and across the room from the lone woman/water fountain wall, as far away from them as we could possibly get (like this was actually going to do any good in such a quiet room), and sat down.

There were no heavy objects within short person’s reach anywhere.  There were only a few small pamphlets on an end table, but I decided to distract Cale with my purse anyway (he likes to open and shut it, open and shut it, open and shut it, run around in circles, then open and shut it, open and shut it, run around in bigger circles, then open and shut it, etc.).  Then, somebody called our names.

At first I thought that we were going to the examining room, but we were just going to the place where the scale and blood pressure cups are kept.  “Oh God!  What are doing back here?” I asked, becoming awfully tense as I realized that the screaming was only seconds away now.  I actually found myself looking at a small window near the scale, determining whether or not I could get it open.  “We’re just getting his weight,” the woman told me, “Do you know how much he weighs?”

“No,” I answered.  And a moment later, when we put Cale on the scale, the entire clinic found out why I didn’t know how much he weighed.

I managed to get him calmed back down again with my purse when we sat back down in the waiting room.  But then, when the doctor came out to get us, Cale destroyed the quiet yet again with the best of his eardrum shattering screams.  Only this time he didn’t stop right away.

He threw himself onto the ground (nearly ripping my shoulder right out of its socket) and started rolling around, flailing, raging, and trying to bang his head onto the floor, which I’ve become pretty good at preventing, but that’s kind of hit and miss actually.  I mean, to be truly thorough in preventing a head bang, you have to get your knuckles crushed between the head and the floor.  But a less painful approach is to try and get the child up, get the head away from the floor.  This gets harder and harder to do though, as Cale gets bigger and stronger, because he hits me in the face and pulls my hair and fights me with all of his strength.  So sometimes, due to the repeated action of the head banging, and the fact that my vision is temporally blurred because I’ve been hit in the eyes again, his head actually makes contact with the floor.

The nice thing about being at a doctor’s office when this happens is that the doctor can check for signs of concussion right away.  Not that I don’t know how to do that myself.  I’ve been an expert at it for years now.  But it’s still nice to have a professional right there to make sure that it’s done right.

As I dragged my screaming, flailing child down the hall to the examining room, I saw another little sign that read, “Meditation,” which I pondered for a moment because any time things start repeating themselves in my little world, it requires pondering.  And I could swear that I heard a still small voice say, “No human power can relieve Cale of his Autism.” 

Obviously, I was a little too busy to stop and listen to a God, the one who wasn’t exactly rushing his butt down here to help me drag my son across the floor.  “Well, we’re going to have to talk about this later because I’m a little BUSY at the moment, dealing with this child that you’ve so graciously blessed my life with,” I said rather sarcastically, either to myself or out loud, I’m not exactly sure which. 

The doctor handed Cale a bucket of wooden blocks (that somehow, neither of us got hit in the head with when they later flew through the air in a fairly massive little spray) as I tried to get the examining room door locked.  “There’s a lock on this door but it doesn’t line up!” I actually began to panic.

“What?” she asked.

“The door won’t lock,” I answered, breathing deeply.

“Oh, would you like to put a chair in front of it?” she asked.

“Okay,” I said, knowing that it might not be secure enough, but what was the other option?

In an hour’s time at the doctor’s office, Cale only screamed and flailed and threw things and banged his head onto the ground, four times.  Not bad actually, but I still couldn’t relax.  Things just happen so suddenly with him.  He’ll be quiet and smiling his gorgeous little smile one second, and be trying to throw a plant or crack his skull or hit you in the face or escape from the room, the very next.  The unpredictability is the worst part of it.

As we were checking out at the front desk, I found myself staring at yet ANOTHER little sign that read, “Meditation,” but was quickly distracted by the reception, “Would he like a sticker?”

“NO!!” I replied, “thank you.”

Yea, I suppose that it might seem a little Post Traumatic Stress-ish.  I can even see how it might seem a bit debilitating, since I refuse to take all three of my children (or even Cale alone) anywhere by myself unless I absolutely have to.  This is the reason that a couple of my children haven’t been to a dentist in nearly three years now.

Not only is the dentist unable to get everything accomplished in one appointment, so there have to be multiple appointments for each kid (cleaning and x-rays during one, and any needed work in another) but it’s also hard to find a dentist that will just knock Cale out for his cleaning and x-rays during the first appointment.  They always want to “try it without anesthesia first, and then if he won’t hold still (and he won’t) then we’ll schedule ANOTHER (fucking) appointment and put him to sleep for that one.” 

So we have to go to TWO appointments just to get a cleaning and x-rays for Cale, plus additional ones for any work that needs to be done.  And there are all of these things to contend with at the dentist’s office - long waits, machines that are just waiting to be broken, and very hard floors available for head banging.  I just won’t do it, not even if my children’s teeth begin to rot right out of their heads.      

We didn’t actually spend much time discussing the trauma with our new psychotherapist (as we’ll be doing that one on one later, if I decide to go through with the suggested trauma counseling), but we did spend some time on the nature of ongoing grief.

I’ve always preferred to think of the grieving process as more of a “surrender” process, because the word “grief” is just a little too psycho-babble-ish for me.  What it looks like for me is this – each time we try something new to help Cale (a therapy or doctor or healer or medication or diet or vitamin or supplement or combination of supplements, etc.), I really try not to get my hopes up.  But it’s awfully hard for me not to become attached to the possible results of each thing that we try.  And we keep finding things to try because we want to feel like good parents, we want to feel like we’re doing our part to get him anything that might help him.  And each and every time, even though I try not to get my hopes up, my hopes actually rise a great deal.

What happens next is that the thing doesn’t work.  Nothing changes.  And my hope is shattered again.  Then I have to surrender (or grieve) all over again to the fact that Cale is probably really never going to learn how to talk, and that he’s probably really going to tantrum for the rest of his life as a result.  Then, in order to feel like a good parent, I find the next thing that might help, try not to get attached to the results but do anyway, the thing doesn’t work, and I have to surrender (or grieve) all over again.  Then I do it again.  And again.  And again.  And again, etc., all with this future institutionalization thing hanging over the tops of our heads.

I guess I thought that grief had a shelf life.  I mean, the text books say that grief can last about two years and then the person finally accepts the new way of life and moves on.  Do you see what I mean about knowing just enough to be dangerous?  But in this case, we don’t get to know whether or not Cale will ever talk.  And we have to live day after day after day after day, month after month, year after year, with the frustration that he feels as a result of not being able to.  I mean, it would be one thing if he was happy not being able to talk.  Then I really wouldn’t mind it a bit.  But he’s not.  He’s smart.  Very, very smart.  And he’s stuck inside of his own mind, with no way of letting the world know about all of the things that he’s thinking about.  Frankly, I’d be screaming and flailing and head banging and scratching my own skin and pulling my own hair out too.

It would almost be easier if the professionals would just say, “There’s no hope for your child,” and give him a lobotomy or something.  Or, at the very least, clip his vocal cords so that the rest of us could live in peace.  You know?  Like they do to those yappy little dogs?  I’ve actually asked professionals how I could get this done.  Cale’s psychiatrist has been the only one to understand how I could ask such a thing.  Everyone else has been completely and thoroughly horrified, but I’ll tell you, stopping the screaming alone would improve the quality of our lives more than just about anything else in the whole, entire world would.

The professionals really can’t ethically say that there’s no hope, can they?  And what kind of a horrible thing would it be to have to learn to live without hope anyway?  We have to hope that he’ll learn how to talk.  We have to keep trying things.  We have to keep setting ourselves up for the next round of grief.  It’s a horrible, heart breaking, never-ending process.  And you would think that each time you went through it, it would get easier and easier.  But it doesn’t.  In fact, I have found it harder and harder to spring back from each time.  Because it’s not really surrender at all (true acceptance of the way things are right now).  It’s grief.

In addition to our marriage counseling, this counselor also suggested trauma and grief counseling for me.  And, near the end of our session, she finally looked at me and said the words that I was dreading, “Would you consider taking an anti-depressant?”

Shane piped in, “Hey, wait a minute.  I’m unhappier than I’ve ever been too.”

“Uh-huh,” she said to Shane.  Then she looked back at me again, “I don’t think that you would need to take one forever, because you don’t have a history of clinical depression.  And you’ve both had perfectly normal responses to the experiences that you’ve been living with, but I think you should consider taking a serotonin uptake inhibitor for a little while, maybe even just for as long as we’re going through this counseling.”

“Wow,” I said laughingly to Shane on our way home, “A heart attack risk, PTSD, ongoing grief, and Clinical Depression, not to mention the fact that I was already a bit of a nut job in the first place.  I just keep getting better and better, don’t I?”

But I think that he might’ve been too busy wishing for a little magic pill to hear meJ