Bridge to Shore - Part 1

“But at last I could not help being gripped by the problem, in all its urgency and difficulty, and I found myself compelled to give an answer.”

C.G. Jung

I think that my nephew spies on my son at school.  This is because every time I’ve gone to the school this year (for a holiday program, or a meeting, or to give Cale his medication because I’d forgotten to give it to him earlier that morning, or to pick Cale up for a doctor’s appointment), I have found my nephew in the hallway outside of Cale’s classroom.

He’s sneaky about it too.  I mean, I don’t usually see or hear him at first.  But then, as if out of thin air, he’s suddenly standing right beside me.  “Hi Aunt Jessie,” he says, looking directly into my eyes until I begin tearing up, and then looking away again. 

This sweet nephew of mine has Autism as well.  I remember watching his behavior when he was little and believing him to be the actual definition of “a parent’s worst nightmare” – no eye contact, no snuggling, hiding under the table when people came over, fits of rage that made the Hulk’s transformation looks like small beans, and hyperactivity that could rival the speed of even world’s fastest race cars. 

This particular combination made for huge and continuous battles to accomplish even the smallest of daily tasks for good number of years.  It also made for a constantly trashed house, regular calls to the police department because he had escaped again, and a mother whose exhaustion eventually settled into her so deeply that she finally just stopped.  She got to the point where she would sit down at family barbeques and refuse to get up for any reason at all.  And when a family member would come to her and say, “He’s running away again,” or “he’s destroying something again,” or “he’s having a fight with so and so,” she would respond with, “Well, feel free to try and stop him.”  Then she would lean back in her chair, put her feet up, and savor her salad like it was the last bit of food on the face of the entire planet. 

This nephew’s early prognosis wasn’t good.  He was just like Cale is now, the only difference being that Cale has always made good eye contact.  Not only did the doctors say that this nephew would probably never speak functionally, they also said that he would probably never even be toilet trained.  But today, not only is he toilet trained, he’s also in a regular education classroom at school (with breaks, obviously, so that he can wander the halls and keep an eye on my son).  And he speaks so functionally that he can make direct eye contact with an Aunt who begins to cry nearly every time she sees him.

I must confess that having a child like my nephew was the worst possible thing I could imagine for a great number of years.  But now my hope is that Cale will become just like him, instead of becoming like my mother in law’s nephew with Autism – the one who’s in his twenties now and is institutionalized because he’s still non-verbal.  And do you know what the difference between these two nephews is?  The one who keeps an eye on my son got therapy (years and years and years of therapy).  The other didn’t.

A few weeks ago, I went in for a treatment with our healer because I wasn’t feeling well.  And, after working on me for a few minutes, she told me that I’m going to have a heart attack.  And not within a matter of years or months, but within a matter of weeks.  “But I choke down vegetables and shit like that.  And I work out every day.  And I don’t smoke anymore.  Well… okay… not very much anyway,” I told her.

“It’s not that,” she said, “It’s stress.  I think that it must be the stress of having two geniuses for children.”

“Oh, here we go again,” I thought.

But then, a couple of minutes later, she amended it to, “It’s guilt!  Oh wow honey, it’s guilt.  What could you possibly be feeling so guilty about?  You know it’s not your fault that your children are the way that they are, right?”

A thirteen year old actually sprung out of the core of being and nearly said, “Um, DUH,” but I quickly stuffed her back down where she belongs so that I could use the words of an adult instead, “Yes, I do know that, thank you.”

“Well,” she replied, “you need three vitamin e tablets per day.  And you’ve got to stop doing whatever it is that you’re doing to yourself.”

“Guilt,” I said to myself later as I was popping vitamin e tablets, “That’s the most ridiculous thing I’ve ever heard in my entire life.  I mean, just because I’ve given up everything that my children had going for them – all the therapy that they had in Arizona – so that we could move back to Montana, doesn’t mean that I feel guilty.” 

“Just because I’ve given up everything that Cale needs in order to learn how to talk, everything that he needs in order to have even the slightest, tiniest chance at becoming a functioning, and possibly even taxpaying, human being some day, doesn’t mean that I feel guilty.  Just because he’s probably going to end up institutionalized (and maybe in the not so distant future) instead of having a shot at becoming like his cousin, or maybe even like Temple Grandin, just because his mother so selfishly insisted on living near her friends and family here in Montana, doesn’t mean that I feel guilty.  And just because my other two children don’t get to have a mother because I’m so damn busy dealing with Cale all the time, doesn’t mean that I feel guilty.  I mean, really?  What could I possibly have to feel guilty about?”

An opening came up for a Medicaid waiver here about a month and a half ago.  It’s called a Medicaid waiver because it’s Medicaid that’s given to children with disabilities based on the disabilities, not on the family’s income.  So they “waive” the low income requirement, so to speak (actually, I think that they base it on the income of the child alone instead of on the income of the family, or something like that). 

Wait, let me explain this first - When we decided to move here, I thought that there were fifty Medicaid waivers available in the state of Montana to children with Autism.  What that meant was that fifty children with Autism, out of the entire state, have Medicaid to cover Autism therapies, and that the rest of the children with Autism in this state whose family’s aren’t yet dirt poor (who either don’t have medical insurance or whose insurance companies don’t cover Autism therapies) are simply being thrown to the wolves, metaphorically speaking. 

I know that sounds a bit like something out of the stone ages, but I thought that it was the reality here in Montana.  And we were (and still are) entirely dependent on Cale receiving one of these Medicaid waivers (and Isabel too, even though she’ll never get one because her need isn’t as severe) since our medical insurance doesn’t cover any therapies for Autism.  Cale (let alone Isabel) won’t be getting therapy until he’s selected for one of these waivers because we can’t afford the cost of the therapies out of pocket (which for Cale comes in at around $4,000 per month for the basics, and for Isabel comes in at around $2,400 per month for the basics – that’s $6,400 per month (just for the basics) that we’re expected to pay for therapy, out of pocket, if we want to feel like good parents – and we don’t have anywhere near that kind of money).

When we applied for the Medicaid waivers for Isabel and Cale, Cale went straight to the top of the waiting list out of all of the children with Autism.  This is because placement on the waiting list is determined by the severity of disabilities.  And, compared to other children with Autism, Cale is severe (he’s almost six years old now and is still nonverbal).  Therefore, I figured that even though it would be a wait (they informed me that they wait for people to die around here for these slots to open up), he’d surely be selected eventually.

When the opening came up, it was immediately filled by somebody else.  So we called the state and asked why.  The reason was because a child with Cerebral Palsy, who had serious and immediate medical needs, filled the slot.  “So, let me see if I’ve got this straight,” I exclaimed, “It’s NOT that there are fifty waivers for children WITH AUTISM here?  It’s that there are fifty waivers TOTAL, for all of the children with disabilities, here?  Do you mean to tell me that there are children with serious and immediate medical needs, along with children with Autism, being thrown to the wolves around here?  And, yes.  That’s actually what’s happening.  This isn’t the stone ages.  This state isn’t anywhere near as advanced as they were during the stone ages. 

Cale has a lot of medical needs, yes.  But they aren’t, and probably never will be, considered serious and immediate, especially when compared to children whose medical needs actually are serious and immediate.  The reality is that Cale is probably never going to be selected for a Medicaid waiver here in Montana.  So, in spite of what all of the research says about how important it is for children with Autism to get therapy while they’re still young, and in spite of all of our family experience, Cale isn’t going to be getting therapy here.  And he’ll eventually be institutionalized for the rest of his life as a direct result, an unimaginable cost to taxpayers compared to what it would cost if they would only invest in him now.  But, whatever.  It’ll be the taxpayers’ problem.  I’ll apparently be dead from a heart attack. 

This, along with the long, slow realization that my healer really isn’t helping Cale in any kind of significant way, sent me into the strangest bout of sadness.  The weight of it has been truly unbelievable.  I mean, I’m a person who has a lot of tools for keeping the blues away.  But that’s the problem with this type of thing, isn’t it?  You just don’t care enough to actually use the tools.    

I’ve had to come to accept that not only is there not going to be any therapy, but that no doctor or healer or anything or anyone is ever going to be able to help Cale (I’ve officially tried everything that I’ve ever been able to think of).  And future institutionalization is something that I just don’t know how to make peace with.  And it isn’t going to change.  No matter what I do.  It isn’t going to change.  It’s going to stay like this.  And, for a little while anyway, I thought that a heart attack might not be such a bad thing.  In fact, I even quit working out and doubled my cigarette intake so as to expedite the process.

Did you know that the orphans in Uganda are the lucky ones because the children there get more care in the orphanages than they do in their own homes?  We have a friend who just came back from there.  I could never go to Uganda.  I’d come home with a baby if I did and, with my luck, it would end up having Autism too.  I guess my point is that if you ever find yourself feeling sorry for your child that the state in which he lives couldn’t possibly care less about him or his future, you don’t have to look very hard in order to find more intense suffering. 

This is ordinarily how I derail self pity - I find people who have real problems.  But somehow, that just hasn’t been good enough this time.  Somehow, I’ve been hurting like I did when I first found out about Cale’s Autism, and I didn’t think that it was possible to ever feel like that again.  Well, not only have I come to know that it’s possible, but I’ve also come to know the full weight of not being able to get myself out.

At the rather insistent urging of both of our spiritual advisors of sorts, Shane made us an appointment with a counselor (and, come to find out, this is the one thing that Shane’s insurance company is good for – it won’t provide the therapies that a child needs in order to avoid future institutionalization, but it’ll provide all the counseling the parents need in order to get through the pain of it).  And I thought that this counselor was going to be your average, run of the mill marriage counselor, but she turned out to be a master’s level psychotherapist instead.  “Uh-oh,” I thought, as I was looking over her credentials on the way to our appointment. 

You see, I have a B.A. in psychology, which basically means that I know just enough to be dangerous.  And I’ve often thought that I might be developing symptoms of depression from all of this Autism stuff, but I’ve never really wanted to land in front of a psychotherapist and have it confirmed.  Sure enough, however, Shane and I went in for a session of marriage counseling, and I came out with Post Traumatic Stress and symptoms of ongoing grief – the magic combination for a real, live chemical change in the brain.

The words Clinical Depression nearly hit me in the head as they flew out of her mouth.  And I didn’t even tell her about the really traumatic stuff – like all the times that Isabel threw herself onto the ground in parking lots and started banging her head onto the pavement in front of or behind moving vehicles, or about how Cale still escapes from the house, or struggles free from my grasp (he’s getting so strong), and runs out into the street in front of moving vehicles, or about the tantruming - the sometimes truly unbelievable and constant tantruming (yea, there’s no “Post” in the Post Traumatic Stress of these last two because these are things that still happen all the time).  I also didn’t tell her about the fact that these things are never going to change.  I mean, call it guilt, or trauma, or grief, or depression, or whatever you want to.  The point is that my sweet little boy is never going to get better.

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

Bridge to Shore - Part 3

“To me the supreme meaning of Being can consist only in the fact that it is, not that it is not or is no longer.”

C.G. Jung

Just before we left our counseling appointment, the counselor said to us, “Gosh, it’s really too bad that your son can’t get the therapy he needs here, and that you guys don’t have respite care.  You really need the respite.  Have you considered moving back to Arizona?”

Shane answered, “We’re going to give it a year here and see what happens.  After that, I don’t know.  Moving here was a big change for the kids.  We’d hate to change everything on them again.”

“Well,” she said, “You two need a support structure in place, an entire support structure underneath you.  You need your whole community to come together and help you.  You need your community to rally.”

I thought this was an interesting choice of words actually, because one thing that our community does, and does incredibly well, is rally.  I’d go into the details, but it would only be bragging about a bunch of fantastic people who probably don’t want to be bragged about in a blog.  So I won’t.  But I will give you a little example.

One time, when Shane was willing to watch the kids for me so that I could get out for an afternoon, I went to a barbeque amongst my friends and sat down next to a woman that I didn’t yet know very well.  “Hi, how are you?”  I asked.

She squirmed in her chair and said, “You know, I was really scared to come here today.  I was afraid that I wouldn’t know anybody very well, but it turns out that it doesn’t matter that much how well you know people.  I was incredibly uncomfortable just before I got here.  Isn’t that silly?  But now I’m really glad that I’m here.”

Refreshing, isn’t it?  Tell me how you’re REALLY doing.  My point is that small talk is practically non-existent in my little world.  Yet I’m afraid that I’ve recently been guilty of saying, “I’m fine.  I’m fine.  Just fine.  How are you?” 

Boy is that an effective way to let my own mind devour me completely.  Unfortunately, I know how to look good.  I know how to put on nice clothes and a smile big and tell you want you want to hear.  And lately, when someone has asked how I’m doing, I’ve said, “Fine.  Just fine.  So glad to be home again.”

It didn’t take long for somebody to call me on it.

 “Are you just saying that?”

Pause.

“Yes.  Yes, I am,” I answered.

I spent the next fifteen minutes vomiting chunks of everything that’s been going on (the state stuff, the money problems, the worrying about my son) onto this guy, and he didn’t mind a bit.  But finally, he looked at me and said, “You know that God is the answer, right?”

“I know, I know, I know,” I replied.

“No, really,” he said.

“I know,” I said, trying to sound just a little bit more sincere.

“Hmmm,” he said, “Can I do something with you right now?  Can I pray for you?”

He took my hands (I actually looked around to see if his wife anywhere wondering why I was holding hands with her husband in the parking lot) and he prayed for help, guidance, and direction for me in a moment when I couldn’t have done it for myself.   

After that, Shane and I asked this guy if he would come and finish out a room in our basement for us, as we were never going to be able to get it done ourselves.  And this guy was in our basement every day for the next few weeks, getting a taste of the exact nature and consistency of Cale’s behavior (the non-stop screaming, the non-stop sounds of things hitting the floor, the daily flooding of the bathroom, a house that always looks like it’s been hit with a tornado, and two other children that hide in their room so as to escape all the chaos).  And one day, he found me upstairs crying.  I hadn’t showered in days.  Again.  And I found out later that evening that he had just been downstairs telling Shane that we’re his heroes because he doesn’t know how we go through what we go through with Cale.  Whoops.  What a hero to have, huh?

We proceeded to have a conversation about self-discipline.  He said something about always thinking that he can discipline himself into better living, but that the word that always sticks out to him is “self.”  We spent a few minutes correlating “self” and ego, and then began talking about how using our own egos to discipline ourselves with is a bit like using the same hammer that gave you a headache, to relieve the headache with – you can’t fix the problem with the problem (or by even focusing on the problem).  You can’t make things go your way by being attached to them going your way, because it will always fail eventually (if it even works at all in the first place).  Then he talked about letting God discipline him instead.  He said that our relationship with God is the only the thing, the ONLY thing, that really matters.  And when I’m focused on that, everything else seems to fall into place.

Now, this doesn’t mean that we don’t look at our lives and figure out what’s working and what’s not.  In the case of this therapy that I might be getting, for example, for what the counselor is calling “clinical depression,” I’ll be taking an inventory of sorts, of all of my experiences regarding my children.  And once I’m through the pain of it (taking inventory is painful so I don’t draw it out for too long), I’ll have an objective list of my thoughts and ideas about things.  Then I’ll be able to discard the ideas that are no longer working for me - I like to put them on a piece of paper and give them to God (burn them).

Focusing on the problem for long enough to take an inventory is appropriate I think.  But taking a good, honest look at the problem is only a beginning.  There must then be a solution to the problem - a way to live on a different basis (it’s different because it’s no longer based on old ideas that no longer work).  I have to acquire some new, good ideas.  And in this case, this guy was asking me to let the God idea be my new (well, not so new actually, but refreshed) idea.  He was asking me to step onto the shore of faith, and begin to live again as though there were a God in my life.

When I get really honest about it, I want my son to learn how to talk so that he’ll stop tantruming so that my life will be easier.  And while this isn’t an entirely unjustified desire (because his tantruming sucks, frankly, for him and everybody else), it’s still motivated by “self.”

Motives based on “self,” no matter how well intentioned, never bring about the desired results.  It’s like it’s one of those funny laws of the universe or something.  And until I actually change my motive - Dear God – what do you want to have happen?  Give me the knowledge of your will for me (and just me, I don’t get to have the knowledge of God’s will for anybody else) and the power to carry that out – I’ll never have any peace.

Finally, he asked me if we could pray again, only this time he had me say the words.

After this, it was almost like the top came off.  People started coming out of the woodwork all over the place asking what they could do to help us.  Things like, “So, I was driving down the road yesterday and I couldn’t get you out of my head.  I’d really like to do something for you.  What can I do?”

And do you know what to do when someone asks you that, that specifically and that directly?  You think of something.  Anything.  You also see what you can do to help somebody else.

I had an Autism parent over for coffee last week.  I cleaned up all of the evidence that Cale lives in our house, so that it didn’t look like a depressed person lives here.  We planted non-depressing flowers in the front yard.  I put pots of non-depressing flowers on the front porch.  I took a non-depressing shower before this person came.  And I made a non-depressing cups of coffee for each of us to discuss our children over.  It was the least depressed I’d felt in weeks.  It’s amazing how that works.

 “When I got your message,” I said, “you said something like, “One of our shortcomings as parents is… “  And the part that actually bothers me is that you think you could possibly have shortcomings as parents.”

This person said, “So you don’t think I should beat myself up too badly then, huh?”

“No, you shouldn’t,” I said, “In fact, I think that you should take the entire idea (that you could’ve somehow failed, or be failing, as a parent) out into the woods and shoot it dead,” only I can’t remember if I actually said that last part out loud or if I only thought it really hard.

Good advice, huh?  And it seems as though I should be practicing what I preach.  The guilt is definitely going onto my list of ideas that no longer work for me.

The people here have been really helpful.  I could go on and on, but again it would be bragging.  But one thing that’s brought a tremendous amount of relief is that we have a couple of financial experts (ha ha!) that are going to help us with our finances.  They refuse to make actual decisions about what help Cale will be getting and what he won’t be (an example – do we stop taking Cale to the psychiatrist for his ADHD, which costs us $360 per month, not including medication, until our high deductable is met for the year, and use that money to get him a little bit of speech therapy each month instead?) as these kinds of decisions are brutal and can only really made by us.  But they will help us to set a budget for our family, and help us to allot an appropriate amount of money to Cale (because Cale is only one of five people in this family).  Then we’ll be able to take the appropriately allotted amount of money and get whatever we can for him with it. 

Yes, he’ll still have a great number of needs that won’t be getting met.  But I won’t have to feel so guilty and unsure all the time about every last penny we ever have NOT going into Cale alone.  It’s an incredible relief not to have to make these kinds of decisions by ourselves, because frankly, Shane and I are too emotionally attached to the situation to be able to make objective decisions about it.

The room is the basement is nearly complete now, thanks to our friend.  This will give Alden and Isabel a quiet place to play while Cale is screaming.  And people have been babysitting for us, and have taken Alden and Isabel out to do things and get some attention that certainly wouldn’t have gotten at home. And I’m so grateful for these things that I can hardly keep it in.

Shane and I were talking about all this help recently, and I asked him why he thinks it is that I start crying every time I think about someone helping us.  I mean, it’s a happy thing right?  So why the tears?  And he said to me, “Because when you’re asking for a lot of help, it means that you need a lot of help.  And that’s kind of hard to swallow because it’s very, very humbling.  But it’s also okay.”

I was at coffee with my spiritual advisor of sorts last week, telling her that I don’t know how to make peace with the future institutionalization thing.  And she told me about a friend of hers who ended up institutionalized when she reached adulthood.  She told me that this person’s parents dreaded this for the entire time she was growing up, but that when it finally happened, this person actually thrived in the place.

Then she said to me, “You know, maybe Cale is beyond human aide.  Maybe no human power will be able to relieve his Autism.”

“What?” I asked, “What did you say?”

“I said that maybe no human power will be able to relieve Cale’s Autism,” she said, echoing something that I thought I had heard somewhere before, “I mean, I know that you’re feeling guilty about giving up all the therapy so that you could move here, but didn’t Cale get back to back therapy sessions all day every day for over two years straight in Arizona?”

“Yes,” I remembered.

“And there were no results, right?” she asked.

“Nothing that lasted,” I answered.

“So maybe Cale is beyond human aide," she continued, "Maybe nothing can be done for him.  Maybe you’re not here for Cale at all.  Maybe you’re here for the rest of you to get healed up for awhile."

Bridge to Shore - Part 4

“I will remember, day by day, My love, that I’m not you.”

Anonymous

I have decided to go through the trauma and grief counseling, but I don’t know if I’ll be taking an anti-depressant or not yet.  I mean, I’ve prayed about it.  And for some reason the thing that keeps coming to me is the story about the woman with the boat.  The woman needs to get to the other side of the river, and she has faith that God is the answer to that.  So she prays, “God, please get me to the other side of the river.”  And she keeps praying, “Please get me to the other side of the river.  Please get me to the other side of the river.  Please get me to the other side of the river.”  And she’s so busy praying that she doesn’t notice that there’s a boat in the river right in front of her.  So she just keeps praying, “Please get me to the other side of the river.  Please get me to the other side of the river.”  And God finally says, “Get in the damn boat!”

I’ve come to see an anti-depressant as a boat.  It’s even a good, God given boat.  But since I don’t have a history of Clinical Depression (my depression is situational, if it’s even depression at all), and because an anti-depressant would be a temporary solution for me, I’d really like to start with something that might be a bit more permanent.  You see, I believe that God is infinite.  And I believe that he has an infinite number of boats.  So if I don’t like one boat, I can try another.  And another.  And another.  He loves me so much that he’s never going to stop sending me boats.  And if turns out that I absolutely have to take an anti-depressant, I will.  But I’ve decided to try something else first.

I’ve decided to give Cale to God.  I’m taking my hands off of him (off of the results of the state stuff, off the idea of getting him therapy, off of finding new things that might help him, off of absolutely everything) entirely.  All the footwork has been done already.  So, for one year’s time (after that, we’ll re-access maybe), I’m not going to do a damn thing but love him.

This might be kind of sad to say, but I’ve come to think of God as an alcoholic father who’s leaving Cale on the front porch waiting to get picked up.  And Cale has his little suitcase packed and everything.  And he’s waiting and waiting, and suffering as result.  But God’s not showing.  He must have other plans.  And there’s nothing at all that I can do about it.  I mean, I can’t manage and control God’s relationship to Cale.  I have no choice but to let him have whatever kind of relationship he’s going to have with Cale.  I’m just the mom, not the dad too.  I’m just one person, not God.  The only thing I can do is decide what kind of relationship I want to have with Cale, and do my little part to bring some joy into his life. 

I can try to help Cale make good decisions (don’t throw the platter of food, dump a bucket of Lego's instead, which makes great sounds too and doesn’t piss anybody off), I can try to help him understand things, I can take him out for ice-cream when he’s sad (through a drive through, of course, so that he doesn’t destroy an ice cream shop), and I can love him with my whole heart.  But I cannot protect him from everything (he wouldn’t learn anything if I did).  I can’t even always protect him from himself.  And I cannot manage and control every aspect of his relationship to life (to God).  Because I’m not Cale.  And the relationship between him and God is truly none of my business.

Now, the idea that God isn’t showing up for Cale might be something that has to go down on my list of ideas that don’t work anymore (I certainly hope it does), because it’s hard to develop a relationship with “he who doth not show the fuck up.”  But, if you think about it, it’s incredibly self-centered to assume that because God isn’t doing things my way, he isn’t doing them at all.

At this very moment, for example, Cale is locked in bedroom, screaming like he’s in more pain than he’s ever been in for his entire little life.  And do I know why?  I haven’t the first clue.  All I know is that his room’s been cleared of absolutely everything, so that there’s nothing that he can hurt himself with.  He’s been so wild that I’ve actually been praying for protection from evil for him, in the name of Jesus Christ.  And I haven’t believed in the devil (or Jesus Christ for that matter) in a great number of years now.  Cale’s teacher’s said that he had a four hour long, very destructive tantrum at school last week, “it was as if he was possessed or something.”  Maybe I should call the Catholic church and see if they still deal with that sort of thing.  Anyway, Cale  could be hurting himself in his bedroom right now, but if I go in there to find out I’ll get kicked right in the face.  And I don’t know why.  Because he can’t tell me why.

Maybe someday, when he can tell me (if there even is a “when he can tell me”), I’ll ask him why.  But for now, God only knows why.  And if he wants to do something about it then he will.  I’ve begged for help from the insurance company and the state.  And they won’t help.  And I’ve tried everything I can think of as far as doctors and the healers, but Cale is beyond human aide.  It’s excruciating to watch.  But, I guess that’s just the way that it is.  And that is exactly what I need to accept.  That’s true surrender.  That is what I can do to make a new beginning in developing my own relationship with God.  I can surrender.  And I can focus on God because, like my friend said, it’s the only thing that really matters.  It’s good to know that I can truly be okay no matter what.

For some reason the thing that keeps coming to mind here is that line out of “Under The Tuscan Sun” when the blond lady says, “Go work on your house, and FORGET about it.”  So that’s what I’ve been doing.  I’ve been scrubbing and organizing and painting the walls.  I’ve been working on my house, and forgetting about it.  Oh, and I’ve been writing too.

Just last week, I heard somebody talk about how important it is to feel everything.  And, a few days later, I went in for my second counseling session.  During this session, the counselor talked to me about how important it is to “take the time to grieve.”  Imagine me sticking my finger down my own throat right now.  I mean, could we please come up with less cheesy language for this crap?  Then she said that if you don’t take the time, it comes out sideways in inappropriate ways (depression) instead.  And, after this, I had a bit of an epiphany about my writing.  I’ll tell you a little secret that you’ve probably figured out already.  I have a horrible writing process (and, coincidentally, I have a horrible grieving process as well).

I write for two or three days straight (whenever my kids are at school and/or not destroying my house), and I mean all day and all night.  Then I “emerge remorseful and make a firm resolution not to do it again.”  Then I don’t write again for a month or two, while the pressure builds.  Then I reluctantly find myself in front of my computer again writing... oh, let's see where I'm at here…  FIFTEEN pages all at once, that I’ll now have to break up into all of these separate little posts so that they’ll actually be readable.  It isn’t a healthy way to write.  Nor is it a healthy way to grieve. 

It’s occurred to me that maybe my writing is just taking the time to grieve.  And not JUST grieve, obviously, but process all of the feelings.  I mean, I never wrote a word in my life until I found out about Cale’s Autism, nor have I ever had a dream of becoming a writer.  But it’s good writing I think, and it does help me a lot.  But it’s painful material to process, so maybe that’s why I tend to avoid it.  But maybe it wouldn’t be so painful if I didn’t actually wait until I was so much pain to do it.

I once had somebody tell me to forget about writing a book (the idea of sitting down and “processing grief,” amongst other things, for the duration of an entire book, might just kill me dead), and just focus on cranking out a four page blog post every week.  So, in an attempt to avoid an anti-depressant, I’m going to take an hour or two every day and just write in the damn blog (amongst other things, like a refreshed daily commitment to thirty minutes of prayer and meditation).  There.  I’ve said it.  So it’s officially a commitment.  You’ll probably get four pages of gibberish every week.  It’ll be worth it for me, but not for you I’m afraid!

It’s strange.  And quite wonderful.  This coming back to life again.  You really can see God everywhere, you know that?  I have this magnificent opportunity to look back on my life, through all of the nasty little distractions, and see where God has been.  He’s been in the dead center of it all, helping me through everything.  So I know that he’s in the dead of center of today too.  He’s in the rain.  He’s in the morning light.  He’s in the leaves of all of these leafy Montana trees.

I once went out of town for a weekend with a bunch of friends of mine.  And, on the way up the mountain, we stopped at a Starbucks.  Now, before this weekend, I hadn’t been out of my house for any extended period of time in close to a year.  So the Starbucks looked unusually beautiful to me.

“Wow.  It’s really beautiful here, isn’t it?  The color.  The light.  That gorgeous, succulent smell (I’m a hopeless coffee addict).”

“Yes,” my friend said, looking at me rather strangely, connecting the dots, and then looking at me again like it wasn’t strange at all, “it really is.”

“Why do you think God keeps me trapped like a prisoner in my own home all the time?  Do you think I’m being punished for something?” I asked her.

She looked at me and smiled and said, “Oh honey.  God isn’t the reason that you’re trapped in your house all the time.  God is the reason you’re at Starbucks today.”

I’m so funny in the head.  I mean, we took my brother to Disneyland a few weeks ago.  And we had to share a hotel room.  And at 4:00 in the morning, I was laying in my bed listening to him snore.  He has such a strange and horrible snore that I’m quite surprised the police didn’t show up and arrest him for disturbing the peace.  And I found myself absolutely seething at God, “You know, if he had medical insurance, he could get that Sleep Apnea taken care of.  That’s probably why he gets fired from his jobs all the time.  It’s because he can’t sleep right.  It’s already hard enough for him you know!  And now you’ve let me know that he can’t sleep either?!  He doesn’t get to have insurance, does he?  Because he can’t keep a job for long enough!  He’s just one more person with Autism that you won’t take care of.  I should probably be getting used to THAT by now.”

Okay, now think about this for a second.  We were at Disneyland.  DISNEYLAND.  My brother had wanted to go to Disneyland for his whole, entire life.  And there he was.  Yet I was chewing on God for not taking care of him.

I can see God anywhere, anytime, by looking at the good things instead of focusing on the crap that’s not going my way.  God’s in the timing of all things I believe, whether I can see it right then or not.  He’s the reason that I’m home right now, completely surrounded by people that I love.  And with the knowledge that I might not get to live here for very long, I get to savor every single moment with them.  It’s gorgeous actually, like savoring a quickly melting ice cream cone.  And this summer a bunch of us are going up to Flathead Lake to go camping!  And I absolutely cannot wait!  I figure that since one of Cale’s favorite things is water, I’ll stick his little toes into that massive reflection of God himself.  I’m going to let him pour the real water.

God is with Cale in all of his endeavors, so I get to stop killing myself by trying to be in all of them too.  And what a relief to know that God’s watching over Cale, even if it is, at this time, only in the form of my sweet nephew.

My mother in law took Cale out to dinner with a bunch of our family members (she's very brave) while we were at Disneyland.  And she said that my nephew was there (the one who spies on Cale at school).  She said that he spent a lot of time playing with Cale, and that he finally looked at his mom and said, “I was like him, wasn’t I Mom?”

“Yes,” she said, “you certainly were.”

And he kept staring and staring and playing and playing with Cale.  So see?  He is being watched over.