"Demon of Pride"

“The world always makes sure that you cannot fool yourself for long about who you really think you are by showing you what truly matters to you.”                   

 -Eckhart Tolle

My head has been spinning a bit this week.  A couple of things happened last weekend that I missed, the first of which was that our best friends moved away from our home town in Montana and I wasn't there to hug them way too hard for way too long, sobbing uncontrollably and begging them to stay.  I wasn't there to help load the truck or chase it down the street when they took off.  Why I had the urge to do these things is a bit beyond me, especially since I don’t live there anyway.  What difference does it make to me where they live?  I think I just wish I could’ve helped, wish I could’ve taken the opportunity to show them my love in a way that they could see with their eyes.

 

The other thing that happened was that my old church camp had a reunion, and I wasn't there to… well… re-unite.  Instead I was at my house in Arizona, trying to decide whether or not to remove the ceiling fans and face-plate covers from the electrical outlets before listing it on Monday.

 

I decided to keep the face-plate covers, and as I was unscrewing the stupid little things from the walls and replacing them with the old, white plastic ones, I thought about everything I was in the process of missing.  And it brought to mind an activity we did at that camp one year when I was maybe fourteen or fifteen years old.  The camp staff put together a treasure hunt, of sorts, for us campers.  We had to go through a series of obstacles, and if we made it through all of them then we got to go to heaven.  I know.  But try to set aside any specific religious ideas and humor me for a moment if you can.

One of the obstacles in the course involved getting past the “Demon of Pride.”  It was really just a camp counselor dressed in black with some sort of ski mask over his or her face.  Each camper was given an item.  It was something silly… like a bible maybe.  Or a mitten.  Hell, I can’t remember.  And the idea was for us to give our items up to the demon.  We weren’t told what we were supposed to do however.  We were supposed to just know.

Now, I must say that spiritual principles have never come quickly to me.  In fact, to this very day I have to sit with a spiritual principle for some time before it starts to sink in.  This one sort of makes sense to me now – that you can’t fight pride with pride, because if you do then pride wins anyway.  It also has something to do with detaching from things I think (people, places, things, situations, specific outcomes, old ideas that don’t work anymore, etc.).  But, at the time, I just didn’t think very abstractly.  And it just made no sense to me what-so-ever why anyone would give anything to a demon.

He/she jumped out of a bush, growling loudly and grabbing for our items.  It was so dramatic that I really had to focus in order to keep from rolling my eyes.  The kids I was with handed their items right over to the demon.  That baffled me, and I really wasn’t sure what I should do.  Long story short, I ended up in a wrestling match with the “Demon of Pride.”  And as I walked away from it, still carrying my item, he/she yelled to me from behind, “But you were supposed to give it to me!”

I wasn’t allowed into the next obstacle with my item, so I had to go all the way back to the bush and find the demon.  There was no growling or grabbing that time, just a disgusted set of eyes encircled in black ski mask, and an outreached hand.  I gave my item to the demon with a red face.  And shockingly, I still managed to leave camp that year having no more idea of how to let go of things than when I got there.

Someone is going to buy our house, along with everything we've put into it - granite, built in Bosch appliances (you can stick a whole chicken into a Bosch dishwasher, by the way, and it will magically disappear – just sayin'), and cherry wood floors, for almost $60K less than we bought the house for three years ago.  And we’re among the lucky ones around here I’m afraid.

And we’ve found out why Shane’s company said “no” to Shane doing his job virtually.  They’re re-organizing the whole team Shane works on, which means that everyone on the team is in danger of being “displaced” (which is a nice word for “laid off”).  Now, they’ve assured Shane that he’s a valuable asset to the company (he’s also an MBA hire which is a hefty investment on their part), so the picture probably isn’t as grim as I think.  But still, change is definitely in the air. 

Shane has been applying like crazy for roles on other teams within the company (some virtual and some not) in part because of the re-org., but also because we’re still waiting to hear whether or not Cale will be selected for Montana’s early invention program.  If Cale is selected, then we’ll drop everything and move to Montana (job or no job).  And if he's not selected, then I'm not sure what we'll do.  I suppose it'll depend on whether or not Shane gets stuck working here in Hell, oh... I mean Phoenix.  In a nut shell, every possible thing in our lives is up in the air, and all we can do is wait and see where everything lands. 

 

It’s kind of strange actually.  After all the work we’ve put into our house, I thought I’d feel some sort of sick, heavy sadness about letting it go.  But instead I’ve felt the exact opposite.  I’ve felt relief, almost like I’ve been digging my way out of a tunnel with a teaspoon and I can finally see daylight.  And we don’t mind letting go of Shane’s job if that’s what happens.  We’re creative, resourceful people who can probably get through whatever comes.  Alden and Isabel would probably do fine in any school in any city. 

 

The only thing I really care about is whether or not Cale gets selected for Montana's Early Intervention program, because I still think it might be his last best chance of learning how to talk.  They’ve already had one drawing in which Cale wasn’t selected, but there’s one more drawing before his birthday (which is the deadline for selection) so I still have hope. 

You wouldn't believe what I've gone through to get Cale ABA therapy here in Arizona.  Because we don't have insurance that covers anything for Autism, I've had to rely solely on state help.  Arizona only provides Cale with two and a half hours of ABA therapy per week, and it’s actually ABA parent training, not direct ABA therapy.  The therapist comes to teach me how to do ABA therapy with Cale, not to work with Cale directly.

  

Doing the therapy with Cale myself has been great for teaching him basic daily life skills.  But for something as extensive as teaching him how to talk, I simply don’t know how to put in the needed hours.  Not without neglecting my other two children anyway.  Plus, I don't really know what I'm doing.  When it's me trying to do it with him alone, it just turns into a big power struggle and makes us both miserable.  It's excruciating to be in the position of having to decide whether to do therapy with Cale or to be there for my other kids, especially because Cale screams and cries and fights me the whole time I try to do the therapy with him. 

Every day for the whole past year I’ve had to make decisions like - should help the kids with their homework and make dinner, or should I make Cale scream for another hour?  Should I clean this massive, disgusting house for four hours or should I make Cale scream for four hours?  Should I take Alden and Isabel to the birthday party, or should I make Cale scream?  Because if I don't make Cale scream, he might end up in an institution some day. 

It takes the whole "bad mother" thing to a whole new level.  I'm a bad mother because I don't take Alden and Isabel to the birthday parties and, at the exact same time, I'm a bad mother because I can't get Cale to talk.  And when I decide that I simply don’t want to make Cale scream, I’m a bad mother for not trying.

Not only is this what we've been doing for the past year, but it hasn't brought anything but the slightest of results.  And it's extremely difficult to not resent your child when everyone else has been neglected so that he could have his needs met, when he’s fought it tooth and nail every step of the way, and when he still hasn’t made any progress.

The state of Arizona gives us these two and a half hours of ABA parent training per week, and will for an extra year past the age when they would ordinarily stop, because I'm the biggest, whiniest, loudest mouth around.  I’ve learned how to be a very persistent pest.  But they've repeatedly assured me that this is absolutely the most we’ll ever be able to get for him here.  In Montana, if he gets selected for the Early Intervention Program, he will get 20+ hours of one on one ABA therapy per week, direct from a master's level therapist that isn’t me.  Oh, I hope he gets picked.

Cale is going to be five years old next month.  And if he passes the age of five without talking, then his chances go down.  It's not that he wouldn't sort of learn how over time (maybe), but the chances of any real, significant, steady progress goes way down.  My sister in law (Shane's sister), who has two children with Autism as well, told me that both of her kids were talking by age five. 

And at a party a couple of weeks ago,  I had a two year old hand me a sucker and say, "Can you opin dis pwease?" which caught me off guard and snapped my heart in half.  How do you explain to a two year why opening a sucker makes you cry, while your own son, who's a full head taller, walks around in little circles and screams at his suckers?  

 

Maybe it's God's plan for Cale to not talk.  And maybe, when I finally get to heaven and get my hands around God's neck, he'll explain to me why I had to give this one up to his silly demon.  He/she can have the location of my friends, our houses, income, cars, whatever.  But Cale talking?  That one just seems too important to give up.  Or, maybe, it’s too important to not give up.  That’s the thing that keeps coming to me over and over and over again - that I need to hand over my attachment to whether or not Cale talks.  It’s a terrible attachment.  And being free of it might just be heavenly.

The heaven at camp was a shady spot under the pine trees at the edge of a hill.  It had a perfect view of the lake.  We ate grapes and fresh Flathead cherries, and we got to be with our friends, simply because we gave something to a counselor in a ski mask (amongst other things).  Oh, wouldn’t it be nice if it worked that way today? 

I guess that heaven for me today is loving people so much that I wish I had the money to fly to Montana to help them move.  And it’s loving people who probably barely remember me.  I’m going to make it to that reunion someday, and whether those people remember me or not I’m going to give them full blown hugs and kisses and tears.  There will be none of the old “too cool to hug” shit.  I’m going to find people and I’m going to knock them over.  They’re going to see my love with their eyes, and they’re going to know beyond a shadow of a doubt that any “coolness” I may have once had is completely gone :) 

My love for people, through the process of letting go of Cale talking, has been a sort of repellent for negative thinking.  I’m trying to think of how to explain that.  Or maybe I should give you a scene out of a movie.

Oh!  I’ve got the perfect one!  And after talking about this, I’ll never be in danger of being cool again :)  In the fifth Harry Potter movie, at the end, just after Harry’s Godfather (along with his dream of having his own parent someday) dies, the evil wizard penetrates Harry’s mind in an attempt to torture him to death with all of his worst fears and all of his very worst memories.  But he sees his friends, and he forces himself to think about them.  

You can see the battle inside of his mind, like a slideshow of flashing memories that flip from good memory, to agonizing memory, to good, to agonizing.  What’s fascinating to me is the nature of the good memories.  They’re such lovely, typical, every day type memories of his friends and family (hugs, laughs, simple hanging out, etc.).  The battle finally ends with such a steady stream of love and friendship memories, that it repels the negative thinking and fear, and ultimately forces the evil wizard out of his mind.

I’ve always been intrigued by the character of Harry Potter (who's actually J.K. Rowling), because I’ve never been able to relate to the way he just seems to think naturally.  I’ve had to learn how to think that way, in part by reading (and watching) J.K. Rowling’s gorgeous little stories.

         

It’s such a paradox that having to let things go brings into focus the things that matter.  Erma Bombeck says in her book - If I Had My Life To Live Over (written after she found out she was dying from cancer) – “I would have burned the pink candle sculpted like a rose before it melted in storage, I would have invited friends over to dinner even if the carpet was stained, or the sofa faded, I would have cried and laughed less while watching television and more while watching life, I would’ve taken the time to listen to my grandfather ramble about his youth, when my kids kissed me impetuously, I would never have said, “Later… now go get washed up for dinner.”  There would have been more, ‘I love you’s, more I’m sorry’s.’  Don’t worry about who doesn’t like you, who has more, or who’s doing what.  Instead, let’s cherish the relationships we have with those who do love us.”

Yesterday, I had a friend tell me that every time he sees me he thinks, “There’s the proof.”

Proof?  “Proof of what!?” I asked.

“Proof that God exists,” he answered. 

My chest almost caved in on itself.  I mean, is that the sweetest thing to say or what?  I managed to refrain from saying, “Are you crazy!?”  Instead I just let myself experience the full course of my very favorite emotion – laughing and crying at the exact same time.

Thanks friends.  And I love you.

   

Miracles

"Anger is a killing thing:  it kills the man who angers, for each rage leaves him less than he had been before - it takes something from him."

Louis L'Amour

I have always had two conflicting, futuristic visions of myself.  And in the past few years, these visions of my future self have become more pronounced, almost well defined descriptions.  It's possible that they've become my actual options.  The potential for either is very real, but I can move towards whichever I prefer.  I have a choice, I think.

The first is that of a deeply embittered, sickly skinny, hunched over old woman, with matted gray hair sticking out of a make-shift bun on the back of her head.  She's probably around seventy years old, but looks ninety.  She smokes two packs of cigarettes per day, walks wobbly using a cane, and dresses in worn, black, second-hand clothes.

She lives in Paris, of course, so that she can soothe herself by wandering the Louvre every day alone, completely undisturbed by interruptions.  She speaks to no one.  Even in Paris, she refuses to even try to speak French (and if you've ever been to France, you know well that goes over).  Instead she spits angry, unintelligible, smoker's hacks at anyone who tries to talk to her, ensuring her alone-ness with perfect completion.

Her very demeanor sweats bitterness (ever met someone like this?), the dripping of which can be plainly seen by everyone.  She knows that it repels people, and she hates it.  She knows she makes it clear that she wants to be alone, but at the exact same time she suffers from an almost indescribable longing for companionship.

She's spent her life needing to be sure, needing to be safe, and needing to be right.  But she hasn't always been sure, certainly hasn't always been safe, and everyone else has usually been "wrong."  She's needed for things to go a certain way, but things have never seemed to go that way.  And she's been angry about all of this for a very long time.  Eventually she dies alone, in her Paris apartment, having missed all the things worthwhile in life because she never could get past herself. 

The second is that of a content, upright and healthy, beautifully maintained old woman, with shiny gray hair smoothed into a little bun on the back of her head.  She's probably around ninety years old, but looks seventy.  She quite smoking so long ago that the doctors can't tell that she was ever a smoker.  She takes calcium and eats vegetables (and makes her husband do the same:), walks comfortably with the exception of a little arthritis, and dresses in a well worn, light gray sweater.  She gets chilly.

She spends her days with her husband.  They take care of their sixty year old, non-verbal, Autistic son, and dream of wandering Louvre and trying to speak French.  Their other children live far away and don't get around to visit that often, so she visits with her husband, the people at the grocery store, and the post deliverers, ensuring her not alone-ness with perfect completion.

Her very demeanor oozes love, the dripping of which can be plainly seen by everyone.  She knows that it attracts people, and she likes it.  She knows she makes it clear that she enjoys companionship, but at the exact same time she doesn't long for it.  Her children never worry about whether or not they visit enough, because they know their parents are happy.  And that's all children ever really want from their parents.

She's spent her life wanting to be sure, wanting to be safe, and enjoying it very much when she was right:)  But she's been okay not being sure, okay not always being safe, and has consistently let go of the desire to make others "wrong."  She would've liked very much for things to have gone a certain way, and she's occasionally become angry when they haven't gone that way.  But she's always recognized anger itself as an enemy, and she's always refused to feed it with much attention.  Anger starves inside of her, so it eventually moves on of it's own accord in order to find better feeding ground.  

She has no regrets, because she's usually done everything she could think of for her son.  And even though none of it ever made any difference for him, she knows she's tried.  She knows she's done the best she could with the knowledge that she's had, which is the only thing she's ever had any power over anyway.  And she doesn't worry about the things that she's missed, because she couldn't have possibly known everything all the time.  She isn't God after all.  But she's done her little part, usually to the best of her ability, and she can smile about that.

She makes it to a hundred years old before her husband dies (that would put him at 105:), and to about a hundred and five herself before finally institutionalizing her son.  She tells her son that she loves him.  She tells him that his parents will always, always be with him.  Then she leaves, trusting that he will be taken care of.  And she dies with the housekeeper by her side, in her house, having participated fully in all the things worthwhile in life because she was usually able to get past herself.

It does seem like, with almost every action I take, I can foresee which vision I'm moving toward.  And lately I've been moving towards lady number one.  In spite of this, the people in my life have literally been taking my hand and pulling me towards lady number two.  You know who you are, and thank you for being brave enough to give me the truth in spite of what I might think of it.  We've had a couple of miracles happen.

We still have hope for Cale getting into Montana's early intervention program.  My husband made the phone call because, frankly, I've been a bit of a bitch lately.  My darling, gorgeous, wise and wonderful husband, called and asked the "women in charge," in Montana, to put my son's name onto Montana's "lottery" list without actually having moved there yet.  And he happened to get a hold of just the right woman at just the right time.

At first she was very discouraging.  She told Shane that there would be a very slim chance of Cale being selected because not only does he need to be on the list before he turns five, but he also needs to be selected before he turns five next month (see, this is where I would've lost it and ruined the whole thing).

Shane responded by telling her that we are under no illusions about Cale's "chances" at anything, but that we are his parents.  He told her that we believe their program might be Cale's last best chance of learning how to talk, and that we need to know we've done everything we can for our son.  He told her that we at least need to try to get him on that list, that it's more about knowing we've done everything we can than it is about him being selected.  Naturally, this woman fell in love with Shane.  And she has bent over backwards to get all of our information in on time to put Cale's name on the list before the next drawing.

She made us commit fully to moving back to Montana in time for Cale to start therapy, should he be selected.  And we did.  If Cale is selected, it will be on or before Sept. 8th of this year.  And if he is selected, then Shane will quit his job if need be and we will move back to Montana.

When Shane got off the phone, we asked each other how on earth we could afford to move if we need to.  And we decided that if it was supposed to happen, it would work itself out somehow.  The next day, Shane brought me a rather curious piece of mail.  A friend of ours has sent us a check for enough money to MOVE if we need to.  We both cried.  And it's going to go into our savings account for that purpose and that purpose alone.  And I don't have the first clue how to thank you enough friend.    

Obviously, my hopes are up high for Cale again.  And I'm in real danger, if he isn't selected, of giving lady number one a hell of a lead.  So I've been making a conscious effort to make peace with the worst case scenario.  And you know the thing that's become clear to me?  Again?  It's never going to be ABOUT whether or not Cale gets better.

Cale is exactly as he's supposed to be right now.  But, at the same time, I have to do the thing my husband told the lady in Montana.  I have to try.  It's all I can really do.  We have to keep doing our part (in this case, simply getting Cale on the list) whether it has any influence on Cale or not.  Because it's more about being able to look ourselves in the mirror and like who we see than it is about anything else.

Finding out that Shane and I are willing to give up our lives here in Arizona, to try to help our son, has been an incredibly awesome and wonderful thing to find out about ourselves.  It means our priorities are in the right place, and that God will take care of the rest.  We've already succeeded I think, whether Cale is selected or not.  Because we're quite happy with who we are at this moment.

You know the other thing that's become clear?  I'm not sure that lady number two existed at all before my son came along.  Maybe Cale's Autism is a gift in itself.  I mean, it's brought out the worst in me at times for sure.  But it's brought out the best in me as well.  And it's made me aware of the choice.  Shane asked me the other day if I really wasn't aware of the choice before Cale.  And I said, "I don't know.  But I do know that Cale has provided lady number two with lots and lots of good practice."

He laughed.         

Dropped

Have you ever heard the saying, "God didn't bring you this far to drop you on your ass?"

It's one of those trite little sayings that people say to you when your reserves are empty, and the general idea is for you to have "faith" that things are going to work out somehow.  It's a convenient little thing for the people who on their feet to say to the people who are not.

I still wish I could put into words the despair I feel about my son not talking.  It's not like a one time slam of hopelessness.  Instead it's like someone's put a little hole in my tank.  So it just leaks hope, slowly, steadily, agonizingly, during every moment of every day.  It must be what it feels like to bleed to death, only I never seem to die.  I just keep draining and draining.

I can hardly stand to participate in my son's therapies anymore.  It's just means one more hour of watching a therapist fail miserably with my son, one more hour of him fighting and screaming and fighting and screaming, one more hour wasted.  Every moment that he doesn't talk past the age of four years old is a moment closer to him never being able to talk at all.  And every day is filled with an endless number of these moments.  Every time I look at my son, he's still not talking.  And I don't know how to, deep down, make that okay with me.  It makes me resent the therapists.  It makes me resent God.  And, worst of all, it makes me resent my son.  It's enough to kill a mother.

Shane and I, and Cale's psychiatrist, have actually reached the point where our biggest hope is to medicate Cale heavily enough to keep the pain he experiences, by not being able to communicate, to a minimum.  He gets incredibly frustrated by not being able to communicate, and he screams and screams and self-harms and screams.  But if he's sedated enough, he's not as disturbed by it.  Then he at least seems happier.  It's a horrible, horrible thing to have your biggest hope become proper sedation.  It's what should happen for a person just before they die, to keep them comfortable.  It's not what should happen for a child who's just starting out in life.

Well, we've recently had a spark of hope.  We found out, a couple of months ago, that the cut-off age for the early invention program in Montana is five years old.  The cut-off age for the same program here in Arizona is three years old.  What that means is that Cale is too old to enter the program here, but he's not yet too old to enter it in Montana.

The state early intervention programs provide ABA therapy for children with Autism, which is a behavior therapy that, when provided 20+ hours per week, has an 85% to 90% success rate in helping children with Autism learn how to talk.  The way it works in Montana goes like this - you put your child's name on the list and, once every three years, they randomly pick fifty kids (yes, out of the entire state) off of the list.  The fifty kids who are picked get 20+ hours of ABA therapy per week, and the rest of the kids in the state don't get any.  The disgusting fact is that they actually call it a "lottery." 

We've always thought it was too late for Cale to get ABA therapy through a state program.  And since Shane's insurance company doesn't cover anything at all for Autism, and ABA therapy is impossibly expensive to pay for one privately, I had resigned myself to believing that Cale might never learn to talk.  But this news brought us some hope again.  If he did win this "lottery" then he would get 20+ hours of ABA therapy per week until he was eight years old.

The problem, of course, is that in order to put your child's name on the list, you must be a resident of the state of Montana before your child turns five (which, for Cale, is on Sept. 8th of this year).  So we decided that we needed to move back to Montana and that we needed to do it fast.

There were other reasons to move back as well.  I could afford to go back to school and work on my doctorate in Montana.  And, our entire family lives in Montana.  And, we've reached the point, financially, where we can't make our house payment here in Arizona anymore.

When we bought our house here, we didn't yet know that we had two disabled children who would require someone to be around for countless, useless therapy sessions every day.  We also always assumed that Cale would go to all day kindergarten this year, freeing me up to go back to work about the same time our students loan payments came due.  However, as it turns out, he misses the kindergarten cut-off age here by one week.  Therefore, he has to do another year of pre-school (which is only two hours per day, four days per week).  I tried to fight this, playing the special ed. card and everything.  But they still won't let him into kindergarten this year.  So I have to stay home with him for another year, and our student loans have come due, and they've made it painfully clear that we can't defer them any longer.  In a nut-shell, we're losing our house.  

My grandma wants us to move back to Montana and get Cale on this list so badly that she offered to help us buy my mom's old house in Montana.  It's only a two bedroom with an unfinished basement.  But we figured it would be worth it for our three kids to share a room until we could get the basement finished, especially if it meant Cale could get on this list.  So we devised a plan of attack, and tackled several things simultaneously.

We went back to Montana for six weeks and rented my mom's house so that we could get it ready to move into.  At the same time, Shane worked virtually.  The idea was for him to show the company that he works for that he could do his job virtually.  That way, they might be okay with him working from Montana on a permanent basis.  He put in extra hours and took business calls at all hours of the day and night (of course, these are things he always does anyway), and he did such a good job that they complimented him on no one noticing that he was in another state.  And since other employees from this company work virtually, Shane thought it was a no-brainer that they'd let him do it too.

At the end of the six weeks, once we'd really gotten all of the information and had finalized the decision, Shane called and asked his boss about staying in Montana permanently.  He explained the early invention program and what it might mean for Cale, and he asked his boss to support him.  His boss did support him, which meant that it was a go.  However, the boss informed Shane that it could be a bit of a process to get it finalized.  So we came back to Arizona and began the "process."

I have to say, I almost felt like I was coming back to life again.  It was like someone had plugged the hole and my tank was filling up again all by itself.  It had been so long since I'd felt that way.  And I kept repeating to myself and to anyone else who would listen, "There's still hope of Cale learning to talk.  Can you believe there's still hope of Cale learning to talk?"  I can't tell you how it nourished me to have that kind of hope again.  My sweet, sweet boy, would have a chance.  And we would be able to give him that chance.  And we were already devising ways to get him off the medication.  Because our boy might have a chance of learning how to talk. 

I was also excited that I'd be able to go back to school and begin work on my doctorate.  You see, Cale doesn't miss the kindergarten cut-off in Montana.  He'd go to kindergarten all day there, and I'd be freed up during the day to begin school again myself.  We'd have a little house that was our very own, which took a great deal of the sting out of losing our house here.  And we'd be with family and friends again.  Wow.  With all that we've been through in the last few years, it was finally all going to be worth it.  With all that we've been through, we were finally going to be able to pick up our poor, old, brutalized hearts, and go home.  Where our son would have a chance at learning how to talk.  God.  It all just seemed too unbelievably good to be true.

Well, it was of course.  The company said, "No."

The decision didn't come from Shane's boss.  The decision came from upper levels, levels high enough to be completely detached from Cale and whether or not he learns how to talk.  And the whole thing has left my poor husband, my otherwise unusually optimist, cheerful husband, utterly and indescribably down.  He hasn't actually been back to work since he got the news.  

The question for us, at this point, is what exact lengths are we willing to go to to get Cale on this list?  I've already sacrificed my career for the sake of our kids.  Are we willing to sacrifice Shane's as well?  Are we willing to sacrifice the security of all of our children?  Are we really supposed to gut ourselves completely so that Cale might have place on Montana's Wheel of Fortune?  If not, then I guess we stay here.  Where we'll lose our house and hope we can find something to rent with shitty credit.  Where I can't go to school because I have to stay at home to participate in pointless therapies.  And where my son is medicated.  Heavily.  Because he isn't learning how to talk.

I keep trying to find something good in this situation, some little nugget of wisdom to give you here.  But I guess I just don't know what to call this besides, "Dropped on your ass."  And the question for me personally has become - how can a person continue to function when the God that is personal to them, who is supposed to love them and take care of them, lifts them up so high and then drops them with such entirety?  And the answer to that, I'm afraid, is that I really don't know.  Seeing an old camp friend this week isn't even cheering me out of this one.  And seeing an old friend from camp is something, I must confess, I would ordinarily call a miracle.  But this time I'm going to call it a coincidence.

   








 

 

Temporary

"Contentment and well-being at once become possible the moment you cease to act with them in view"

 -Chuang Tzu

I've been thinking a lot this week about the temporary nature of things.  We spent part of this summer in Montana where it was cool and green outside, and where we were able to spend lots of time with family and friends.  Upon returning to our house in Arizona, I became conscious of a deep sense of isolation.  Our big, beautiful house here just feels so incredibly empty, whereas the crappy little house we stayed in in Montana was always teaming with life.   

We're currently without respite care, which is a regular problem for us.  And Shane's parents, along with my dad (the only family members we have down here), are all gone until the end of October (they're all gone for seven months out of every year).

We've been back from Montana for two weeks already, and school doesn't start for another three.  It's too hot to spend time outside.  Even if we could withstand the air temperature, the playground equipment at the park could probably be used to fry an egg.  And Cale, with all of his constant screaming, makes it impossible to attend the indoor "kid" activities at the libraries and museums.  So we're literally stuck in the house together twenty four hours a day, seven days a week.  And we're really feeling the isolation and boredom that accompanies us being in Arizona this time of year. 

We have some friends that live near us.  And, in fact, they're some of my very favorite people to hang out with.  But most of their children are raised, for the most part, and they like to go out and do things.  It's hard for us to go out of our house and see them because our kids are so difficult.  And I don't feel that they particularly enjoy being trapped at our house all the time.  So I'm afraid that we just don't see them very often any more.     

We'd like to move back to Montana (we decide this every summer), or, at the very least, move across town to the other side of Phoenix where we have more friends that want to hang out with us and our kids.  And, for the last few weeks, I've been just sure that one of these two things would be the solution to our loneliness.

It's funny.  About the time I think I have a working plan in progress, one that will bring us contentment and well-being, things change.  We've just found out that our best friends in Montana (a part of the life that our Montana house teamed with) are going to be moving away.  I can't say that this has seriously dampened that "plan," but it has dampened my enthusiasm for it.  So I've been making the effort to go across town here several times a week to spend time with my friends over there.  And it's been awesome.  So awesome in fact that I've thought that I might actually want to stay.  However, I realize now, that I hadn't actually tried taking my kids over there yet.

Several days ago, some dear friends of mine from over there invited us to a potluck that they were having this afternoon.  I told them we probably couldn't come because of Cale.  He makes things really hard and we'd just as soon have people over to our house rather than try to take him out someplace.  However, since they don't live over here and they can't come to our house very often, they really tried to talk me into bringing my kids and coming to their potluck anyway.

I told Shane that we should go.  It was an hour away (and half a tank of gas to get there and back), but there was going to be food and kids and a pool.  And we were all in desperate need of doing something fun.  He was hesitant of course.  Because we usually don't go and do things like this with our kids.  But our sense of loneliness and boredom had become so intense that we actually made the brutal mistake of thinking that it couldn't possibly be worse to go out than it was to stay in.  We thought that this time it was going to be different.  So we decided to give it a try.

We were in the car for an hour and a half (road construction coupled with getting lost) before we finally got there.  Once there, we found so many people in the back yard and in the house that it took us fifteen minutes to get to the bathroom.  When we finally had our swim suits on, we went out to the pool.

Cale screamed his high-pitched, ear-drum-splitting scream (at which everyone in the back yard cringed and stared) until we found him a cup and gave it to him.  FINALLY we all got into the pool, Cale started pouring water with his cup, and everyone was happy.  So I began to relax.  And I actually thought to myself, "WHEW!  Thank God it's over with."

My friends began commenting immediately about Cale's scream, "Wow.  WOW.  He's got some lungs on him.  That is really high-pitched and loud."

"Yeah," I replied with a sigh, "It's actually damaged my hearing."  

"I'll bet," they said, "That's really something."

Realizing that these particular friends of mine had never spent much time with Cale, I couldn't help but say, "He screams all the time.  And if he doesn't start talking by the time he turns five, I'm going to talk to a veterinarian about having his vocal cords clipped.  You know?  Like they do to those yappy little dogs?  Then when he opens his mouth and screams, no sound will come out."

Yes.  I actually said that.  Luckily, they thought it was hilarious.

We were told that all the kids should stay outside of the house because they were going to be visiting in the house (and they needed it to be as quiet as possible).  And that would've been fine except that we were only in the pool for about fifteen minutes before a thunderstorm started up.  At that point, the house owners ordered everyone out of the water.

Alden cried and cried and cried.  Isabel cried and cried and cried.  And Cale?  Cale screamed and screamed and screamed.  And I really didn't know what to do.  The idea of having to stay outside with the kids in a thunderstorm for God knows how long, with them not being able to be in the pool (Cale's obsessed with swimming pools), was horrible.  It would mean that for the next hour (or longer) I'd have to chase Cale away from the water, with him tantruming profusely the entire time.  The other option was to go inside and try to make Cale be quiet.  Can you actually hear me laughing out loud about that one?

As I stood there trying to figure out our options, Cale ripped his shorts and swim diaper off right in front of everyone and ran, screaming, into the grass and through a pile of dog shit.  I grabbed him and a towel and laid him down on it, fumbling through my bag to find baby wipes and clothes.  As I did so, he kicked me repeatedly as hard as he could in the throat, chest, arms and legs, with his dog shit covered feet, all while screaming at the top of his lungs.  Just then I looked up and saw the entire back yard full of people staring at me.  You see?  Not only was he piercing their ear drums, but I was still wet with pool water.  So as the dog shit met my skin it turned into brown, oozing liquid which, I noticed as I looked down at myself, was dripping down over my entire body in thick, steady streams.

And I remembered, "Ohhh, that's right.  We don't do things like this."


We left immediately.  Obviously.  I couldn't even take my wet swimming suit off or get cleaned up first because I couldn't bare the thought of a fifteen minute battle for the bathroom, trying to scoot my dog shit covered body in between the people inside while my son shattered their eardrums (if you think it's loud listening to it outside, you should try listening to it inside).

We were there for just over half an hour.  But the entire process took over three.  Shane and I worked our asses off to provide some "fun," we were exhausted by the time we all got back into the car, and our children were more upset than they had been in a very long time.  And, you know?  Suddenly I wasn't that excited about moving over there either.

As we got onto the freeway to begin the long drive home, I have to tell you that, for a moment, I felt really really sad.  And it made me think about all these terrible things, all at once, things that break my heart.  I thought about the mother who let her Autistic son drown in their pool in Phoenix here last year.  And about the Phoenix man who put his Autistic son in the car with him and drove off a cliff last year.  And about the woman in New York who'd been waiting for respite care for nine years, who finally finished waiting and shot her Autistic son and then herself.  These are just the recent instances I've heard about at support group.  Who knows how many there actually are.  This isn't just some little inconvenience for people.  This is life and death stuff sometimes.  And God I wish I could help.  I wish with all of my wishes that I could make things better for Autism parents.  But I can barely make things better for my own family.  Oh God, my powerlessness sunk straight to the bottom of my stomach.  And I began to cry.

As I sat back in the seat of our mini-van, just short of full blown sobs, I noticed that I was freezing cold from the air conditioning blowing on my still wet swim suit.  And just then we must've rounded a bend because the bright sun poured in through the window, warming my skin instantly and drying the dog shit all over my body into an invisible, sticky film.  And it made me laugh.  

You know?  The Buddha lived a completely sheltered and wealthy life until adulthood, upon which he came out into the world and discovered sickness and poverty.  He was so disturbed by the things he saw that he went into a quiet cave and meditated for six years straight (a quiet cave sounds so awesome to me, I think that's why I remember this story), after which he came out and announced to the world that the nature of everything is temporary.

My son's Autism, and all the things that accompany that, seriously disrupts the life of our family.  But it's temporary in that it's not going to last forever.  Our whole family, in fact, is temporary.  Time spent with specific friends is definitely temporary.  And the places we live are temporary.  Thinking about all that makes me want to appreciate things instead of being upset that they don't go the way I think they should, or that they always eventually change or end.  It also makes me appreciate my family, and all of our thousand little idiosyncrasies, much, much more.

So why am I constantly trying to arrange our lives in certain ways?  So that we live someplace in particular?  Or so that we can hang on to particular friends?  Or even so that we can be less lonely?  What's so wrong, exactly, with being lonely?  Because, in the big scheme of things, that's temporary too.

It seems like the more I try to arrange, the more I try to hang on, the more the universe conspires against it.  So what would it hurt if I just let all of that go?  What would it hurt to spend just one little lifetime being with Cale?  And loving my family as much as if it was the last day I ever got to see them again?  And loving my friends in the same kind of way, whenever I see them, without worrying about hanging on. Wow.  That dried dog shit got me thinking about much, much better things.

When I got home I'd gotten an e-mail from one of our old summer camp friends.  He's moved to Arizona, and he wants to hook up somewhere in between where I live and he lives and meet my family.  Isn't that cool?  I think it's been around fifteen years since I've seen him and I'm definitely looking forward to spending a little time with him.  I'll be hiring a babysitter of course.  I'll bring my husband and a short stack of photographs of our kids for him to meet.  Because it'll be temporary, that's why.

Summer Vacation

It’s a warm evening in my home town of Billings, Montana, which is quite possibly the greenest place on earth for a little while each year. I had forgotten how tall the trees are here, and how green the grass gets during the month of June. It won’t last long. A month from now it will get hot, and the grass will dry out and turn yellowish brown unless watered aggressively by the people who own it. People will start to complain about the lack of rain and about their creeping water bills. And I’ll remind them of how often it rains where I live in Arizona, where people plant gravel instead of grass, rolling hills of what looks like pink, glistening cat litter instead of lawns.

Listen to me, talking like I’ll be here in a month. A month from now I’ll be back in Arizona actually, staring gluttonously at the tiny oval of green grass in my front yard, a reminder of home if I don’t look too far out the corners of my eyes, and longing for the miles of watered green in Montana.

Cale’s in the bathtub for the fifth time today, pouring water from one cup into another and back again, and screaming periodically because the water didn’t pour the exact same way as it did the time before. He’s using disposable, plastic cups, one of which has been bent slightly and is messing up his whole bathing experience. He could give a crap about the grass.

I went through weeks of anxiety before coming here, wondering exactly how selfish it was to consider stopping all of the therapy/support for a six week break in my home town. Since Isabel and Cale’s therapies are funded by the state of Arizona, they don’t get any while we’re in Montana. We also don’t get respite care while we’re in Montana, and since Cale makes doing the most basic things, like going outside, incredibly difficult, we have to rely solely on friends and family for help. All the way around, the decision felt selfish. But Shane and I were both in so much need of a strong dose of friends, family, and green, that we decided to come anyway.

Being home again has been nothing short of a little adventure. We’re renting a little house from my mom while we’re here, and it didn’t take Cale more than a couple days to figure out how to escape from it. At my house in Arizona, I have locks up high on all of my doors. But I didn’t want to put holes in my mom’s doors here, so I bought those door knob snap things instead. You know, the ones designed to keep toddlers from being able to turn the door knob? Well, I should’ve realized that, physically, Cale’s not a toddler anymore. He’s almost five. And while he certainly seems to have the brain of an eighteen month old, he has all of the physical coordination of any five year old. So rather than attempting to turn the door knob, he simply broke the snap thing off.

It was early in the morning. Shane, who gets up at the butt crack of dawn every day, was down in the basement working. My other two children either didn’t notice, or didn’t care, that Cale had escaped. And I was still asleep in the bedroom. No, I haven’t drank in years. I simply have a bad case of exhaustion, mainly due to my age and to having had screaming babies for the last eight years in a row, one of which has never grown, and will never grow, up. So I sleep in whenever I feel like it, and I’m often unsuccessful in feeling the slightest bit guilty about it.

I woke to the sound of banging on the front door. I sprung to, realized what was probably happening, and ran into the living room. An intense, pissed off, blond-haired neighbor lady was already in the living room, setting Cale down onto the floor. My other two kids were giggling at the nerve of their brother. And the lady looked at me, seemingly disgusted that she’d gotten me out of bed, and yelled, “He almost got hit by a car!!”

“So? What else is new?”

No, I didn’t actually say that. I only thought it really loudly.

“Oh, I’m sorry,” I said, “I haven’t had a chance yet, but I’ve been meaning to go around to the neighbors’ houses and let everyone know he’s Autistic.”

She looked at me with that blank stare, the kind that said she had no idea what that meant. I often wonder what people are thinking when they stare like that. Are they trying to recall twenty-five year old, vague, images of the “Rainman?” What possible reference could a regular person have? How could they possibly know about the constant drama? Or about how regularly life-threatening situations occur? Or about how these two things in combination eventually burn a mother’s nerve endings down to useless little stumps, rendering them almost completely non-reactive? How could she have any idea what it’s like to live this way? And how could I really blame her for that?

“He doesn’t talk and doesn’t necessarily understand what you’re saying either,” I smiled and shrugged my shoulders, “And he escapes. A lot. So if you see him out, don’t bother trying to talk him out of the street. It’s okay to just grab him… like I’m guessing you just did. Umm. Thanks.”

If Montana’s CPS shows up, I’ll politely introduce them to Arizona’s DDD by phone. And, in the end, everyone will tell me what a good job I’m doing rather than providing us with any real help while we’re here. Whew. The sarcasm is thick tonight. Needless to say, there’s a lock on the door now. And it’s going to leave holes.

The last renters tore up my mom’s fence, which Shane is fixing slowly in between meetings for work. So I’ve had no way of containing Cale outside here, even though he’s become completely obsessed with getting outside. Every single time I’ve taken him outside, he’s run full force directly into the street, right in front of vehicles that seem completely unaware of the speed limit. I dropped my laptop onto the sidewalk the other day to save his life.

I could buy him a collar and dog chain, complete with one of those tiny metal, hang down tags with my phone number etched onto it. “When (not if) Lost, Please Call %$#-*&^%.” Hmm. Maybe I’ll put Shane’s number on it. I do have to wonder what the neighbor lady would think if she saw my son chained like a dog to a fence post in the front yard. It’s actually quite tempting to find out. It’s either that or let him get plucked off by a fast moving truck. Or the third option, which is banning him from going outside at all until Shane gets the fence fixed. I’m going with the third option for now.

He’s bored out of his mind in the house. He won’t play with toys, blocks, or puzzles. He won’t color or look at books. He doesn’t pretend play at all. He doesn’t even watch T.V. He doesn’t do any of the things that normal children do. Instead, he takes baths. And when he’s done with that, he walks around in little circles and screams. Non-stop. The consistency of the screaming has been unbelievable.

I’ve been considering going home early. But the problem with that is that it wouldn’t be any different there than it is here. While there’s fence at my house, he still wouldn’t be able to go outside because it’s 112 degrees out there. So I just keep reminding myself that this is what it’s like to live with my son while he’s out of school in the summertime, no matter where we are. Summer vacation is my version of Hell.

It’s been interesting to watch everyone try to help Cale. We’ve spent a lot of mornings at my best friend’s house, where there’s not only a fence but there’s a trampoline too. But he gets tired of jumping after half hour or so and starts back in with the stimming, screaming, stimming, screaming. So far, my friend’s six year old daughter has been the only one who’s been successful in temporarily pulling him out of his stimming, and getting him interested in one of her toys.

My grandma has bought Cale a bunch of toys, musical instruments, and flash cards, none of which he’s been the slightest bit interested in. And she keeps asking me for more activity ideas for him, which I’m afraid I’m about out of now.

Shane’s mom tried taking him to the park last week, but after chasing him repeatedly into the street with her replaced knee, she called and asked me to come get him. And she hasn’t offered to take him again. My eighty year old grandmother, God bless her, came over this morning and decided that he needed to get out for awhile. She tried to take him for a walk. I really should’ve known better than to allow this, but by that point I would’ve given my left leg for a ten minute break. So I let her, and they didn’t make it around the corner before he had her chasing him around in the street. She brought him back immediately.

After having spent some time with Cale again, my family has started calling every day and saying, “I’d like to take Alden and Isabel to the movies,” and “I’d to take Alden and Isabel to the toy store,” and “I’d like to keep Alden and Isabel over night,” and “Can I pick up Alden and Isabel and take them to the park? I’d take Cale too honey, but I can’t run very well anymore.”

Who can blame them? I don’t even want him right now, and I’m his mama.

So Alden and Isabel are having a spectacular time here, spending oodles of time with family and getting to do fun and interesting things every day, which is so much better for them than sitting around our house in Arizona with no family around, waiting for their brother to grow up so they can begin living their lives. And Shane, God bless him, has been spending all of his spare time on the fence. And so far, I’ve been spending the majority of my days alone in the house with the screamer. And wow. I hate him so bad right now.

A woman asked me, recently, if she could give a friend of hers my phone number. When I told her she could and asked her why, she told me that her friend has two Autistic children. She also told me that her friend said that none of her friends understand what it’s like to have two Autistic children.

My heart sunk when I heard those words, because what that really means is that the Autism mom herself is probably in a bad spot. I looked this Autism parent’s friend in the eyes right then, and I realized that she felt so bad and so defeated by this, that she was almost in tears just telling me about it. So I said to her very softly, “You know, you’re not there to understand it. It’s not your job to understand it. All you can do, in being her friend, is to share your own life experiences with her. Then she can take your experience, your help, and apply it to her own life. Or not.”

She understood what I was saying to her immediately, and it softened her eyes. Then I told her about some little ways she might be able to help her friend, one of which she was already doing just by thinking of her and getting my phone number. I told her she was already being a good friend, and this made her smile.

People can’t always help parents with their children with Autism directly, because they don’t always understand. Not only is each child with Autism different, but the things we do with them can be incredibly hard to explain. I often find myself doing things intuitively for my son, things I couldn’t explain if I tried. And there are times when nothing at all can be done for Cale at that moment, for a million reasons, and that must be as confusing and frustrating for my friends and family as it is for me at times. But, I have to say, that hasn’t stopped my friends and family from finding ways to help us anyway.

My best friend has loaned me her house, fence, and trampoline, almost every morning. My family members have taken Alden and Isabel to do something new, fun, and interesting every single day. And in the evenings, the neighbors let Alden and Isabel play in their yard with their kids. People have brought meals and more meals. And Shane’s got a little troop of helpers working on the fence this weekend. Even the crabby neighbor lady is watching out for my son. These things don’t go un-noticed. In fact, they make us feel loved. And that’s been worth every minute of being here. We’re absolutely surrounded with love, by people who don’t understand. But I can’t afford to let that stop them.

I’m still waiting for that poor Autism parent to call me, although I’m not sure what I’d tell her exactly. I’d probably tell her to let her poor friends off the hook. It’s been my experience that friends who stay near Autism parents are indispensable. I’d probably also tell her to take their love, even if it’s lasagna instead of understanding. And maybe I’d even give her my floaty, swishy, Zen answer, “While your son’s locked in the house screaming again, go outside and enjoy the grass while it’s green.”

Journey off the Porch - Series of Four (Part One)

"...the Holy Spirit overshadows me and sends angels to guard me."

Aleister Crowley - Diary of a Drug Fiend

Sometimes I sit out on the front porch in the evenings, waiting for Shane to get home and watching the neighbors as they come home from work.  They drive up the block slowly, carefully avoiding small children on bikes, strangers walking dogs, and mothers jogging half naked while pushing strollers with tires that look like they belong on small S.U.V.s.

These neighbors often drive right past my house and I can sometimes, for just a moment, catch a glimpse of their faces right before they're swallowed whole, one by one, by the garages that line our block, a row of car sized mouths that ensure no one need be bothered by actually seeing one another.

Their faces often carry the remnants of small worries, what happened at work maybe, or whether or not they have all the ingredients for the dinner they're planning, doubts about kids getting to Cub Scout meetings on time, rush hour traffic.  And I sometimes find myself envious.  Envious of them and their normal lives.  And envious of the people they so carefully avoid running over.

My children aren't the ones out front on bikes.  Cale still runs out into the street if I let them out front.  It's not every time, but it's still often enough.  He's almost five and he's never had any interest, whatsoever, in doing something appropriate like sitting on a bike.  He prefers, instead, to repeatedly try and get himself killed.  Or to start screaming suddenly for absolutely no reason at all, slapping himself as hard as he can in the face with his own hands, leaping into the air and throwing his body into the street, and pinching his own legs until bruises remain.  It's really quite the scene.  It leaves strangers staring and wondering what the hell I've done to my kid.
I'm experienced with this now though.  I have an emotional mommy shield six inches thick, specifically designed to ward off looks of judgment.

My son does this partly because he has no safety awareness.  That's the Autism in him at this point.  But he also does it because he can't communicate.  You know that annoying stage somewhere between 18mo. and two and a half years old when a child becomes frustrated because you don't know what they want?  ALL the time?  There's a reason it's called the terrible twos.  It's about lack of communication and the need to overcome it.  And the moment words finally come, the terrible twos seem to magically disappear.

With Cale, the lack of communication has never been overcome.  So the frustration grows - becomes uglier and uglier.  His tantrums may last for thirty seconds, or they may last for over an hour.  There's absolutely nothing anyone can do to stop it other than attempt to hold him down (which is incredibly fun while the neighbors are watching), and there's absolutely no way of predicting how long it will last.

These behaviors make hanging around out front, well, doing anything actually - camping, hiking, swimming, going to the park, the store, leaving the house at all, anything whatsoever, noisy.  And sometimes life threatening.  And, therefore, a bit of a drag.  So we stay in the back yard or in the house 99.9% of the time.

We don't have a dog.  We had one for a minute once, but it didn't work out with the kids.  And I haven't jogged in a long time.  I used to, although usually not half naked, but that was before Cale outgrew the stroller.  After that he proceeded to get us kicked out of every single gym within a five mile radius of our house.  Now I just sit on the front porch, trying to glimpse neighbors' faces, and feeling the fat cells multiply on my ass like some viscous yet benign cancer.

I sit on the porch a lot these days in my spare time, smoking cigarettes and waiting.  Waiting for the kids to come home from school, or for Shane to come home from work.  Waiting for the therapists to show up.  Waiting for them to make Cale talk or, at the very least, stop tantruming so that I can carry on with my life.  Waiting for my purpose to be something other than doing the dishes and acting as a shield between Cale's head and the floor as he attempts to hurt himself again.  Waiting for the motivation to fold another meaningless load of laundry.  Waiting for the paint to peel.  Waiting to live.

I feel like a coyote in a trap watching everyone else go happily by.  They worry about their dinners and their Cub Scout meetings.  And I quietly contemplate chewing my own leg off.

I was sitting on the porch this morning, waiting for my kids to come home from school, when I had a "moment of clarity."  I was smoking cigarette after cigarette after cigarette when I suddenly, and quite profoundly, thought of someone.  At the exact same time I just as suddenly, and just as profoundly, became keenly aware of the fact that I'm dying on this porch.  And I was able to remember something crucial.

After that I was able to recall several more crucial somethings, things that had been coming to me over the previous weeks but that I hadn't put altogether yet.  I'll get to these a little later though.  First I'd like to talk about this someone.  Well, several someones actually.  I'd like to talk about Reminders.

My dearest friend and I recently had a conversation about "Crazymakers," as Julia Cameron calls them in the Artist's Way.  Crazymakers, in an incredibly brief nut shell, are people who can cause me to forget my own truth.  Or rather, I should say, my reaction to them can cause me to forget my own truth.

Crazymakers' activities are, but are not limited to, showing me limits, doubts, and fear.  They cause unnecessary chaos in my life, try to get me to live by their agendas instead of my own, and try to make me believe that I can't, or shouldn't try to, do this or that.  They have logical and compelling arguments, a lot of times, that are specifically designed to stop me dead in my tracks.  For a full description go to p. 44 in the Artist's Way. 

A tiny, yet classic, example of a Crazymaker in my life is the psychiatrist's office, "Sorry ma'am.  There's absolutely no possible way we can get Cale in to see the psychiatrist, nor can you talk to the psychiatrist, until Cale's next scheduled appointment two weeks from now (no matter how hard, how often, or how suddenly he's slamming his head into the floor)."

In that moment I may really perceive this to be a dead stop, which can turn me, in my own mind, into a powerless mother who has no choice but to sit back and watch her son self-harm until the psychiatrist's office decides it's convenient enough to see us.  I become a victim.  Someone who has to watch her son suffer with nothing that I can do about it.

This is absolutely not the truth of course.  I'm a powerful mother.  Sure I may feel sorry for my son and myself for a little while that the psychiatrist I've chosen doesn't mind if my son cracks his skull.  But I don't let that stop me from moving forward in the situation.  I simply keep calling the psychiatrist's office multiple times a day, politely presenting detailed descriptions of my son's current behaviors.

I also called the state right away with the detailed descriptions of my son's current behaviors.  And they too started calling the psychiatrist's office multiple times a day.  The state even sent someone over to the psychiatrist's office to speak with them in person about the situation.  And the next step was going to be the state filing an official complaint against the psychiatrist's office.  Not surprisingly, the psychiatrist managed to find the time to get back to me relatively quickly. 

These people don't mean to be Crazymakers.  It isn't personal and they aren't bad.  They simply may not share my truth at that particular moment.  They have a different truth of their own perhaps, their own agenda to follow.

Learning about Crazymakers got me thinking about another character in the play that is this life of mine.  I'll call them Reminders.  These are the people who remind me of the truth about who I am.  They're the exact right persons at the exact right moments who just appear, as if by magic, to remind me, usually unknowingly, of something crucial.  

Now, I feel it important to point out several things.  The first is that I cannot necessarily choose whether I am being a Crazymaker or a Reminder in someone's life.  I can certainly be present, give a person my undivided attention, and really try to see their truth.  I can try to help.  I can be a good friend to them.  But I cannot possibly claim to know another person's truth.  Only they know about that.

I act as a Crazymaker in the lives of some people and as a Reminder in the lives of others.  I don't always get to know which role I'm fulfilling either.  If I try to be a Reminder for someone then I'm probably being their Crazymaker.  The best I can do is to live my own truth.  And my truth may then act as a reminder for someone else of their truth.

Second is that most people, in my relationships anyways, end up acting as Crazymakers at some times and Reminders at others.  Which brings me to my final point which is that I have a choice.  I can turn a Crazymaker into a Reminder.  It's not near as much fun as encountering Reminders that don't make me crazy, but it is possible.  I'll use the psychiatrist's office again as an example.  They tried to teach me that I was powerless in the situation.  But I learned about the power that I did have in the situation instead.  

It's not easy turning Crazymakers into Reminders.  It often requires learning about who I am in relationship to things.  Things like power, fear, faith, the nature of my own truth, the nature of someone else's, just to name.  And the Crazymaker may absolutely resist me as I turn them into a Reminder.  They may threaten to remove their love or approval as I draw that big fat line in the sand.  But sometimes, especially if I can snip away at my attachment to what others think of me, Crazymakers make very good Reminders.

Cale's Autism, if you haven't put this together already, is my single biggest Crazymaker.  But I still have hope that it might, one day, become my ultimate Reminder.  I suppose it will all depend on what I'm willing to learn about myself in relationship to the Autism, and what I'm willing to do with that information.  And this brings me to the those crucial somethings I spoke about earlier.

I'd like to tell you three of my Reminder stories.  I'd like to tell these stories mainly because story telling is funner and more productive than sitting on the porch.  But also because each of these stories contains a powerful truth for me.  These are truths I've used my whole life.  And I'm finding myself drawing on their power again now.

 Reminder Story #1 - Guardian Angel
(It's safe to move forward.)

My very first Reminder was a boy on a dirt bike.  This is my smallest, most precious, and most succulent Reminder story.  It's also my least profound and most boring but that, I think, is what makes it so gorgeous.  It was so mysterious to me for so many years, but then turned out not to be so mysterious after all.  I love that about it because I'm one that would take an ounce of reality over an ocean of mystery any day.

When I was a little girl, four years old to be exact, I used to walk about three blocks home from kindergarten every day.  I rather enjoyed these walks until, one day, this little girl in my class started telling me graphic and horrible stories about kidnappers who liked to steal and hurt little girls.  She told me she'd seen them in the neighborhood and that I'd better be careful walking home from school in the afternoons.  Naturally I became terrified of walking home alone.

One day, I only made it half a block before my anxiety reached such heights that I couldn't go any further.  I turned around and ran, as fast as I could, all the way back to the school and into my kindergarten classroom.  Sobbing, I explained to my teacher that I needed my mom to come and pick me up.

My kindergarten teacher was this young, beautiful woman with long, dark hair that draped down to the bottom of her back.  She had soft eyes and an unusually kind face.  She got married that year and changed her name, which confused us all a little.  All year long, whenever someone called her by her maiden name, she gently corrected them with her married name.  She was also allergic to dandelions and would sneeze when I would bring her a bouquet of them the size of my head.  Just sayin'.

She talked to me softly that day.  Then she took me by the hand and walked me out to the street.  She knew the neighborhood was perfectly safe (this was thirty two years ago by the way) and I think she wanted me to face my fear.  She told me she'd stand there and watch until I made it up the block and around the corner.  That way I'd only have two blocks left to go.  I started walking and every three steps or so would stop and turn around to see if she was still watching.  She stood there and watched the whole time it took me to get up the block like she promised.  Then I went around the corner.

Realizing I was alone again, I got scared.  Very scared.  I started hiding behind bushes every time a car drove by, not knowing if the drivers were out looking for little girls to steal and hurt.  Pretty soon I began to shake uncontrollably under the weight of the knowledge that I was very, very small, so I stopped in the middle of the sidewalk and began to cry.  Then, just before I turned around to run back to the school again, this big boy on a dirt bike flew out of an alley, spraying the sidewalk with gravel and skidding to a stop right in front of me.  He wore a baseball cap and was absolutely gorgeous.   

"Hi," he said.

"Hi," I said back.

"Where do you live?" he asked.

I told him where I lived and he said, "Come on, I'll take you home."

I was speechless as we walked.  He acted like this was a bit of a chore for him, yet he was doing it anyway.  I stared at him all the way to my house, didn't take my eyes off him one time.  I couldn't figure out why a big boy like him was being so nice to a little girl like me.  I had never had any big boys be nice to me before.  But there he was.  He may as well have sprouted wings because I actually thought, with my four year old mind, that he was a guardian angel.  "What grade are you in?" I asked him.

"Third," he answered, "Is this your house?"

"Uh huh... thanks," I said.

Then he sped away as fast as he could on his bike.  I didn't catch his name.  And I don't remember ever seeing him around the school again.

Throughout elementary school, whenever I thought of this incident, I remained perplexed as to why a third grade boy would stop and be kind to a little kindergarten girl.  I thought for sure that he couldn't have been a boy at all.  He had to have been a angel, sent by God to deliver the truth It's safe to move forward.  I went around for several years telling the other little girls at school not to be afraid to keep going.  "When I got scared," I would say, "God sent an angel on a dirt bike to help me keep going."  And eventually, when I got older, I filed the incident tenderly in my mind under Miracles.  

Years and years later, when I was in my early twenties, I made a terrible decision one night.  I'd been ditched by my friend at the bar (no doubt because she wanted to go home and I wanted to keep drinking).  Then I met some guys who invited me to an after hours house party.   "Sure, I'll go!" I answered, my blond curls especially thick and seeping disastrously into my brain.

I had been drinking, obviously, and any wise judgment I may have otherwise had had melted like cheesecake on a radiator.  If you've never put cheesecake on a radiator, try it.  It's funny.  So I got into a strange car with a strange group of guys and off we all went to this house party.  As we were driving through what seemed to me like the middle of nowhere, I suddenly became profoundly aware of how incredibly stupid this was.  I got a very bad feeling and started getting scared, but I didn't want to say anything just in case I was having nothing more than an irrational overreaction.

When we got to the party, everyone was getting sloppy drunk and there wasn't one other girl anywhere.  I did not feel safe and I could foresee a thousand possibilities, none of which boded well for me.  "How could I be so stupid?" I thought to myself, "And what the hell do I do now?"

I knew that I was a very long ways from where I lived.  It was winter, freezing outside, and it was the middle of the night.  So I was afraid to leave.  I didn't have any money for a cab, didn't have any friends I could call, and certainly didn't have the courage to ask one of these strange guys for a ride home.

I felt like crying.  I wanted desperately to go home.  I sat down on the couch and started to shake.  And that's when I remembered, vividly, all about feeling very, very small.  I'm not kidding you when I say that that is the thought that was interrupted by his voice.

"Hi," this gorgeous creature on the couch next to me said.

"Hi," I said back.

"What's your name?" he asked.

"Jessica," I answered.

"And where are you from Jessica?" he asked.

I told him where I was from and politely asked him where he was from.  We started talking and quickly discovered that we were both born and raised in the same town (the one we were both still in) and that we'd gone to the same elementary school.  However, since he was older than I, and we'd therefore never been in class together, we quickly gave up on trying to figure out if we'd ever met before.  But we talked for a long time about the school and the neighborhood it was in.

He told me he spent his entire childhood riding dirt bikes with his buddies through all the alleys in that neighborhood.  He reminisced about popping wheelies and creating make shift jumps out of plywood and concrete blocks.  Nope.  Still didn't make the connection.  But then I proceeded to tell him about my kindergarten teacher, no doubt because feeling small was still fresh on my mind, and he said, "Oh wow!  I had her for kindergarten too!  Only her name was different when I had her.  She got married and changed her name the year I was in third grade."

I stopped and stared at him.  "That's the year I had her for kindergarten," I said, "So you were in third grade the year I was in kindergarten?"

"Yeah.  I remember that year clearly.  Oh I was so bummed when she got married," he continued, laughing rather nostalgically, "I had the biggest crush on her.  She was really beautiful wasn't she?"

"Yes she was," I replied, "So... did you... well... do you remember ever walking one of her little kindergarten girls home from school one day?"

"Oh yeah," he answered, rolling his eyes, "She had me walk hundreds of her little kindergartners home from school over the years.  And I did it every time she asked.  Like I said, I had the biggest crush on her."

I kept on staring at him.  Then, "I thought you were an angel," actually slipped out of my mouth.

I might've been more disappointed that my angel story had been a sham had I not desperately needed to remember that particular truth at that particular moment.  I also realized that my kindergarten teacher may, in fact, have wanted me to face my fear, but that she hadn't just sent me to do it all alone.  And this healed a little something somehow.

So he wasn't an angel.  But, as it turns out, "a regular boy on a dirt bike" works just as well for me.  I remembered that I could move forward.  I didn't have to stay at that party.  I could call my dad if I absolutely had to.  There's always a way.  But by then, of course, I wanted to stay for just a little longer.  I kept on staring at this guy, my eyes filling uncontrollably up with tears.

He looked me in the eyes for a long time.  Then he smiled.  I wanted to hug him.  I wanted to do more than that to him actually.  A lot more.  I wanted to keep going forward!  He considered letting me too, for a little while.  He enjoyed being a momentary hero I think.  But, ultimately, he decided to honor himself, and the girlfriend he confessed to having, so we didn't.  Instead, he offered to take me home.  Again.

Whew.  I'll tell my next Reminder story tomorrow.  For now I have to sleep.

Journey off the Porch - Series of Four (Part Two)

"He wanted to be an analyst.  I said to him, "Do you know what that means?  It means that you must first learn to know yourself.  You yourself are the instrument.""
Carl Jung - Memories, Dreams, Reflections

Ever since I found out about Isabel and Cale's Autism, I've wondered why in the hell I ever went to college.  I spent a lot of money on college.  And if God's plan was for me to be a stay-at-home mom - to do the dishes six hundred and fifty thousand times each day, try to mother three children, and be required to participate in a multitude of never ending therapies for Isabel and Cale for the rest of my life - then why on earth did I waste all that time, and all that money, getting an education that I'd never be able to use?  It's been a serious sore spot in my relationship with God for several years now.

About three weeks ago, I had to rearrange some book shelves to make room for Cale's therapy tools.  In order to do so, I had to move all of my old college text books into one location.  I got them all lined up in two perfect rows and then sat down, feeling satisfied that I completed my chore, and began reading their titles.  It had been a very long time.

Psychology, Social Psychology, Social Problems, Infancy, Childhood, and Adolescence, Theories of Developmental Psychology, Human Behavior, The Nature of The Child, Interpersonal Communication, Sensation and Perception (no shit), Learning and Behavior, Educating Exceptional Children, Exceptional Lives - Special Education in Today's Schools, Psychology of Learning and Instruction, Educational Psychology, just to name a few. 

I sat there in absolute shock.
 
I have the foundation, just about, for a career in ABA (Applied Behavior Analysis).  ABA is what's been missing for my kids, the thing I've been searching all over the city desperately for (with seriously varying luck I might add, but which got me learning about the education requirements for an ABA therapist/educator).  "So why," I thought, "don't I just finish up my education so that I can use ABA with my kids myself?  Plus, then I'd be able to use it to go back to work once Cale's in school all day next year."

What this means for me, basically, is going into the therapeutic education of children with Autism.  This would serve my own children for the rest of their childhoods and probably beyond.  I also might be able to participate, some day, in getting ABA into the public schools.  Because the public schools need ABA training for students with Autism worse than people in Hell need ice water.  That's just my own opinion of course.

The more I thought about this over the next few days, the more it sunk in that God, in spite of me, had been preparing me for my children for years before I actually had them.  All I need to do is finish it up.  Since I already have a B.A. in Psychology and a Master's degree in Education, it would only take me about a year. 

To be this close to it, however, seized me instantly with fear.  Not so much the heart pumping, sweat pouring down the sides of my face, unable to move kind of fear.  And not even so much the procrastinating type, the can't call because I'm paralyzed on the front porch kind... wait a minute.  Huh.   

Seeing that I was paralyzed, and because she was looking into the program for herself, my hab. worker brought me the paperwork on ASU's Autism/ABA programs.  She handed it right to me.  The next brick in my road could not have been more clear.  But, I began coming up with excuses about why I couldn't do it, the old gas tank that is this head of mine fueling itself up for a clean get away.

"I've been a stay-at-home mom for a long time now.  And I've let my teaching license expire.  They probably would never let me into the program."  But, actually, that's not it.  "I'm getting a little old to be stepping back into college again."  But, actually, that's not it either.  "I wouldn't be able to leave my kids long enough to attend classes every day.  Scheduling it in would never work."  But, that's not it either.  "Where would I come up with the money for such an endeavor?  Can I really justify stealing time and money away from my already strapped family for my own personal gain?  And then what if I failed?  What a waste it would be."  All of this is bullshit of course.

"Why am I afraid?" is the only real question here.  And most of the time, I can't figure out the answer to that question with my brain.  I have to look back, again, at my actual experiences for the answer.  So I did.  And I came upon an old hurt, which surprised me a little.  And in facing this old hurt, I remembered a tired and incredibly typical old truth.

 Reminder Story #2 - Becoming Something Different

(When one door closes, another will open - if I let it.)

My education was a total fluke.  I never knew what I was interested in, nor did I ever have any idea what I wanted to be when I got done with it.  But I absolutely loved college.  My idea of heaven on earth was a college classroom.  So I just kept randomly picking classes that I thought looked interesting.

When I finally had to graduate, I'd put together enough psychology classes and enough art classes to get B.A.s in both in Psychology and Art.  Then I went to work as a counselor in a group home for about a year before I just had to get back to my preferred environment.  So I went back to the college, opened the catalog to some random page, which Master's Degree in Education just happened to be on, and thought, "That'll do."  Then I went on to get a Master's Degree in Education without any actual interest in becoming a teacher.

In an eventual attempt to use all this education of mine, I became an Art teacher at an alternative high school in my home town.  "Alternative" meaning that most of my students had been kicked out of the regular high schools.  It was hard for me at first.  Soon after I started, Shane asked me if I liked it.  I told him that I loved it.  I loved my classroom with the old black and green checkered linoleum floors, the smell of charcoal, paint, and rubber cement, the sun pouring into the windows in the afternoons, the ability to make art every day.  "I absolutely adore it," I said to him, "I just wish I didn't have to have all these kids in my room all the time."

I very quickly, and quite dramatically, grew to adore my students.  But in order to bring that about, I first had to change my thinking a bit.  You see, I'd always had a huge passion for Art history.  And I'd always just assumed that others felt the same.  So I started out the year delivering long, heady lectures about one hundred year old, dead, french painters.  I jumped around the room, wide-eyed, discussing them as if my current life depended on it.  Then I assigned essays to see if my students were actually listening.  They weren't.

I genuinely couldn't understand why my students seemed more interested in huffing the rubber cement than in learning about Matisse.  But I knew that many of them didn't have the easiest of lives and I could understand the need to escape into rubber cement (amongst other) highs.  What became clear to me right away was that my students needed people in their lives that they could trust.  People who loved them.

Providing entire groups of kids with love that they can trust, all at the same time, and throughout each and every day, requires structure.  A lot of structure.  And providing structure to that extent exhausts a person like me.  I dumped all of my energy into it, sunk deep down into the furthest depths of my reserves, to access the strength to provide that kind of structure.  Because whether or not my students felt loved depended on it.  I got very, very clear about the expectations in my classroom.  And this helped things a lot. 

The other thing I had to do was to distract them from the rubber cement.  I had to make Matisse meaningful somehow.  Fun.  Fun for them, not me.  So I created projects that I thought might interest them.  And, as it turned out, cutting out giant chunks of cardboard, painting them, and then creating individual wall sculptures, which we later glued all together into one, giant wall sculpture and hung in the school's main hall, was much more interesting for them than listening to lectures.  In fact it made their own Art larger than life.

For weeks I watched my students stand in the main hall with their friends, pointing out their part in the giant, unified sculpture.  They told their friends and the other teachers all about Matisse, how we'd made the sculpture exactly, and that they thought the sculpture should stay in that spot forever.  Our principal agreed completely.  So the card board, large appliance boxes that several of my students had rummaged alleyways to find, were transformed into something that had a permanent place on our school's wall.

Many of these kids had never actually done anything like this before.  Watching their genuine awe through the whole process made me feel kind of sad for them, but incredibly proud of them at the same time.  And that's when I realized that my students, not Art history, had become my passion.   

Money was always tight in the school district we were in and one day, in an attempt to spot places they could cut spending, the school board began looking into closing down our school.  We, the staff and students of our school, responded with a polite fight.  We all went to board meeting after board meeting after board meeting after board meeting, attempting to persuade the board to keep our doors open.  We had to evaluate and specify every detail of our program.  We had to demonstrate, clearly, the value of our students, the value of our staff, and the value of our school for the future of our community.  It was such an eye opening and magnificent experience to do this. 

I watched my students, the ones who'd started the previous year huffing rubber cement (and doing meth) show up, repeatedly, to these board meetings with purpose, and intent - bright eyed, dressed up, and there to share their experiences about how the school was their home, about how it was changing their lives to get a second chance.  "Please don't give up on us," came politely and calmly out of their mouths.

My students were present the day the other students came to a board meeting, ONE board meeting, and presented their arguments about why they should get the school district's money instead.  Some of these were my husband's old students, although he no longer lays any claim to them.

These were incredibly bright kids with ridiculously articulate mouths.  They were clearly the Honor roll batch - fresh hair cuts, clean clothes, gifted, snooty - debate team types, from wealthy families, who'd probably never seen one single real problem in the entire course of their young lives, ones who seemed to believe that elitism is still the wave of the future as opposed to that flat, dead thing in the past (whew - still a little bitter I guess).

They showed up, laid out their arguments, and then one of them finished with this, "We don't do drugs (like hell they don't) and we don't get kicked out of school.  We get excellent grades, we will succeed in life, and WE are the future tax payers in this community.  Invest in us.  We should not be deprived of the opportunities to run our extracurricular activities." 

The shock of it ran all the way down my back, through my legs, and hit the tips of my toes with a thud.  Those words - so perfectly articulated, so beautifully laid out by debate team standards, so thoroughly and sincerely brutal - stay in my memory to this very day, clear blocks of ice left standing on my brain.   

In the end, the school board did decide to close down our school.  But they, at least, let us finish out the school year.  During the last weeks of school, I didn't provide a drop of structure.  Not one.  I told my students they could do whatever they liked in my class.  Yet they remained absolute angels.

One of my students came to my desk one day, during these last weeks, and asked me, "What should I do today Mrs. Spears?"

"You can do whatever you'd like sweetie.  You can draw or paint or doodle.  Whatever you want," I told him.

"Wow.  They're really going to close down the school aren't they?" he asked.

I stopped what I was doing and turned around to look him in the eyes.  "Yes, they are," I replied, "But you are going to be just fine in the regular high school next year."

He looked down at the papers on my desk and said, "But I didn't make it in the regular high school before."

"You were younger then," I said, "And you're more grown up now.  Just show up.  And try.  And doors will open for you.  You can succeed.  I know it.  You'll be okay."

"But Mrs. Spears?" asked this big, tough, sixteen year old boy, with tears filling his eyes, "What if we never see you again?"

I can't count how many identical conversations I had during the following weeks.  And, shockingly, I didn't tell him, nor any other student, to round up some buddies, find some debate team kids, and kick some future-tax-paying ass.  It would've been unprofessional of me.  Instead I told him, and every one of my other students, that he would always be able to call me, or any of the other teachers, any time he ever needed help with anything.  But you know how that goes.  Kids like these don't call.

The whole thing broke my heart at depths I didn't know existed in me, and left an awful taste in my mouth for any future public school teaching.  I politely declined applying for other available Art teaching positions in the district.  By then, Shane had been accepted at Thunderbird anyway.  And a month after school got out, we moved to Phoenix so he could begin work on his M.B.A.  I never, one time, looked for teaching jobs in Phoenix.  That door, for me, had closed.  I never wanted to be a teacher again.

They didn't just close down my old school.  They demolished it.  And turned it into something altogether and completely different.  Now it's a Walgreens.  And I'm a stay-at-home mom.