Another Surrender

There's an old oil painting sitting in my hallway.  I found it while going through the closet the other day.  I started painting it years ago and have never found the time to complete it.  It's one of those that's taken on a spirit of it's own, which means, in a way, it won't be complete until it says it's complete.

Paintings like that are a pain in the ass because they, not the artist, are in control.  And they can go being incomplete forever until the artist finally surrenders to spending all the time necessary with it for it to finally "say" it's done.  They're also, incidentally, the paintings that become masterpieces upon completion. 

It's an image of my daughter walking towards a sunset, off to bigger and better things.  I can't see her face.  Only the back of her head and her dress are really clear.

My problem is with the feet.  I've re-painted them over and over again.  Her dress is so wonderful, so distracting, and has so many glorious things going on it - warm shimmery colors, the glow of the sunset carefully layered up on each fold, and big beautiful, billowy swirls, that it's difficult for the viewer to make out the tiny feet underneath.

"They blend eerily into the ground," someone once critiqued.

"They're getting clearer each time I re-paint them," I answered.

"No, they're not," that same someone replied, "What exactly are the feet supposed to be doing?"

"Well," I answered, "walking the little girl away."

Isabel and Cale both had appointments with the developmental pediatrician the week before spring break, so I left Alden at home with Daddy, packed a diaper bag and made sure I had suckers in it, and drove Isabel and Cale twenty million miles to this doctor's office.

When we got into the doctor's office I pulled out a sucker for Cale, and the doctor said, "Oh, no food in here please."

"Oh," I replied, "okay... but then it won't be long before he starts screaming.  Just so you know.  And once he starts screaming I won't be able to give him the sucker, because a sucker can't be the consequence of screaming."

I think this doctor might be Asperger's himself.  He and Isabel have all the same stiff body mannerisms, and he hates loud noises as badly as she does.  Have you ever been in a room with someone who can't stand loud noises (and I don't mean the grumpy old lady at the grocery store who claims to have weak nerves but who really just has a shitty attitude - I mean someone who genuinely can't stand loud noises?) and another someone who can and does start screaming as loud as physically possible at the drop of a hat?  It's exhausting being in the room with such people even before the screaming begins.

I designed a child's "Scream Muzzle" one time.  You know?  Like one of those kid leashes made socially appropriate by sticking a stuffed puppy dog onto it and making it look like a cute little backpack?  My muzzle was just a drawing - I never did make a prototype, but I've often wondered if I could've made a fortune with such an invention.

This muzzle, like the backpack leash, was cute too - pink with butterflies on it for a girl and blue with puppy dogs on it for a boy.  I made the drawing back when Isabel still screamed and slammed her head into the floor multiple times each day.  Hers was a combination helmet/muzzle with pink ruffles and a teddy bear on the side.  Brilliant idea don't you think?  Or maybe it flies straight over the edge of sick and wrong.  I'm not sure, but Shane appreciated the idea so much he laughed so hard he almost peed his pants.  He, too, has lived with screamers for eight years in a row.

"Okay," the doctor said, "go ahead and give him the sucker."

I pulled out the sucker.  Cale said, "sucker" and "open" so I opened it up and gave it to him.

Then the doctor asked me about Isabel.  And do you know what I did?  I proceeded to talk about Cale.  He didn't mind switching the appointments so that Cale went first, so we talked for a long time about all the things going on with Cale.  And when it finally became Isabel's turn again, guess what happened?  Cale started screaming of course.  And we spent the entirety of Isabel's appointment listening to and trying to figure out the "function" of Cale's tantrum. 

"Why is he screaming?" the doctor asked me (cringing and gritting his teeth at the height of each scream), "What is the function?"

"My best guess is that he's pissed his sucker wasn't a Tootsie Pop with tootsie roll inside.  See how he bit off the end of the stick?  I'm afraid I'm out of Tootsie Pops," I said, as I realized I should've thought of that ahead of time and picked up some more.  I really thought the dums dums would do.

"Give him another sucker, just to see if that's what he wants," he suggested.

"All I have are the dum dums," I said.

"Yeah, but try it," he insisted.

Now, think about this for a second.  If I couldn't talk, couldn't put together how to communicate with words or signs or something, and someone gave me a treat - something that, at first, appeared to be what I wanted but turned out NOT to be the thing I wanted after all - I would be frustrated by that in the first place.  But then if I communicated my disappointment, in the only way I knew how, and the result of it was that they kept trying to give me the thing I didn't want?  Then I'd be really frustrated, because I'd be confronted directly by my inability to communicate my disappointment and/or desire.  In fact, this would frustrate me much worse than whether or not I got what I wanted.  Because I'd feel powerless.  And afraid.  And I don't know about you, but when I feel powerless and afraid the first thing I try to do is assert power (tantruming is powerful).

Why didn't I explain this to the doctor?  Because when I'm in the moment I can't think it yet, if that makes any sense.  I can only feel it (and feelings are more difficult to trust).  When I'm in the process of figuring it out, I can't yet explain what it is that's going on.

So I did as the doctor requested and gave Cale another dum dum.  He took one lick, looked at it more closely, and then threw it on the ground letting out a blood curdling scream.

"So it wasn't a sucker that he wanted?" the doctor concluded, missing the point.

Again I explained, "The function of his screaming is to communicate he's mad that the last sucker wasn't the kind he wanted.  And I don't have the kind he wants with me," I said, "I'm sorry.  I can't always guess these things ahead of time.  I try, but I always manage to screw something up."

We tried several other things to distract Cale, but he wouldn't be distracted.  I finally looked at the doctor smiling cheerfully and shrugging my shoulders, "Well, now all we can do is ignore the screaming."

I tried to get the doctor's attention back and talk about Isabel through Cale's screaming, but Cale started trashing the office.  He grabbed a big plastic toy truck off the table and threw it into the filing cabinet.  Then he started knocking over the waste paper baskets and the chairs.  Isabel started rocking in her chair, eyes closed and and hands over her ears.  Then Cale went over and hit the doctor.  Then he hit me.  Then he sat down and started pinching his own legs.

The doctor tolerated this for about five minutes before writing an actual prescription for no less than twenty five hours of ABA therapy per week.  Then he shuffled us out his door.  Cale screamed all the way home.   

"So how did the doctor think Isabel is doing?" Shane asked me when we got home.

"I couldn't tell you," I answered, "We never got to Isabel."  

"It's crucial that you get Cale twenty or more hours of ABA therapy per week for JUST THIS ONE YEAR!" I keep reading and hearing everyone say, "Because he's at the crucial age for learning to communicate.  If he doesn't get it THIS YEAR his chances of ever speaking functionally go way, WAY down!"  I can see why people mortgage themselves into permanent financial despair trying to help their kids.

I spent the next several days researching and calling and trying to find out how to get Cale twenty five hours of ABA therapy per week to teach him how to communicate.  I called every agency in the city that provides it.  There are only four.  And these four agencies service an area of five million people.  The first two don't take state paid kids at all.  The third doesn't service people out where we live (they're an hour and a half away - and no, they can't take him if I drive him) and we're on a long waiting list at the fourth.

SARRC has a pre-school for autistic kids that provides twenty hours of ABA therapy per week as part of their pre-school program (it's an excellent program), but it costs roughly $2150 per month to send a child to and they don't take state paid kids.  I'm afraid that our house payment isn't even that high (even if we were willing to stop making the house payment, I don't think a whole year would go by before the bank kicked us out and we had to pay rent somewhere anyway) and our student loan payments have come due again ($1100. per month).  We've been on our fourth deferment, I think, and if we don't pay them this time they'll garnish Shane's wages - not even give us the opportunity to send the money to SARRC first.  So I'm afraid that we're simply maxed out.

So I called SARRC and got the director of the pre-school program on the phone.  I told her I had a bachelor's degree in psychology and a master's degree in education (the two degrees required to work in their school).  I told her I'd work there or volunteer for FREE if they'd take Cale into their program.  She was so wonderful.  She talked to me for over an hour, she offered to evaluate and make suggestions for Cale's public school IEP (which she later did), and she spoke to me softly and kindly because she could tell I was out of my mind afraid.  I begged.  I actually begged.  But there was nothing she could do.

"We're a non-profit," she explained, "and we rely on grants to make the pre-school program possible.  It actually costs us about $2700. per month per child to run the program, but we're able to charge parents $2150. per month because of the grants.  There's no way we could afford to have your son in the program for free, no matter how many hours you were willing to volunteer.  And we have a tiny program.  We won't be hiring anyone anytime soon."

She said I could call her any time and wished me luck. 

Spring break was the longest week of my life.  I didn't have time to play with Alden and Isabel at all.  I dealt with Cale instead - didn't let him get away with breaking things and ignored his screaming.  And when he'd finally stop screaming (stop attempting to communicate) he'd retreat back into his old little stimming world.  I hadn't seen stimming like that in months, but that's what happens when I simply refuse to respond to my son's only means of communicating (screaming and tantruming).  He doesn't communicate appropriately instead because he doesn't know how.  So he just stops interacting with people entirely.

The week went like this.  I ignored the screaming until he started stimming, then I pulled him out of the stimming and played with him until he started screaming, then I ignored the screaming (used the opportunity to wash a couple of dishes) until he started stimming, then I pulled him out of the stimming and played with him until he started screaming, then I ignored the screaming (microwaved two hot dogs and put them onto the two clean dishes I'd gotten washed) until he started stimming, then I pulled him out of the stimming and played with him until he started screaming, then I ignored the screaming (put applesauce and pickles on the plates) until he started stimming, then I pulled him out of the stimming and played with him until he started screaming, then I ignored the screaming (realized the hot dogs had gotten cold and the applesauce and pickles had gotten warm - fed these things to Alden and Isabel anyway) until he started stimming, then I pulled him out of the stimming, etc., etc., and so on and so forth.

I'm on my own as far as the ABA therapy goes, and I know how to implement some of it.  I just don't yet know how to find the time to go through the processes required to teach Cale communicative words and actions, all by myself.

I don't really have time today to talk about the processes required to teach Cale (the ABA therapies).  If anyone's interested I could do a blog post on it some time that goes into detail.  Just let me know.  Leave a comment or shoot me an e-mail or something.  But this is a very rough and general description of what it looks like for Cale:

First and foremost, Cale has to be pulled gently out of his stimming and be able to sustain a simple, two way, non-verbal or verbal interaction without becoming so frustrated he starts tantruming.  I have to try to keep him in that space right in between comfortable and freaking out.  It's like a balancing act.  And it can't be interrupted twenty thousand times a day by hot dogs, other kids, constant therapies, dishes, phone calls, etc., or else I can't ever take it to the next level.  This is as far as it ever got over spring break.

Next, he has to be taught how to be taught whatever it is I'm trying to teach him (if that makes any sense), because he doesn't necessarily generalize learning something from one area or activity to another nor does he have much in the way of receptive language (ie - he doesn't understand simple instructions).  This process is long and complicated to explain, and what it ends up looking like depends a lot on what exactly I'm trying to teach.  

Once Cale's been taught HOW we're going to teach him a word (knows what he's expected to do) then he has to see an action (a sign or some other activity to imitate) or a picture of an item (the tootsie pop) and at the same time hear the word associated with that action or item.  "Tootsie," "Tootsie," "Tootsie," "Tootsie."  This is done at the kitchen table because it requires thirty to fifty repetitions at a time - it cannot just be done in the natural, play environment because you'd never get the necessary number of repetitions in during a child-led activity for him to retain the word.  It can be done in the natural environment as well, but not instead of.

Once the word is retained to some extent (and this is tested using distractors) we then begin using the word in multiple contexts and with different demands (i.e. - put tootsie with same, give me tootsie, etc., each command being taught one by one in a systematic way as well).

Once he's done all this and we're quite confident he knows the meaning of a word, then we start using the word across environmental settings to access functional retention (can he use the word in context at appropriate times in multiple environments?  In his bedroom versus in the kitchen for example - he doesn't necessarily generalize recalling "tootsie" in his bedroom and may localize it to the kitchen).  These things  require additional processes (like I said, I can go into all this in more detail another time).  And if we go one whole day without practicing the word, "Tootsie," he loses it.  It's gone.  And we have to go through all the processes all over again.

These are the processes required to teach Cale ONE word.  Then we're supposed to practice each and every single word, each and every single day.

It's not only time consuming, it's excruciatingly slow.  And exhausting.  And I do have two other children to care for.  I'm not sure I could fit twenty hours a week of this in (after his school in the afternoons and in between all of his other therapies) if I DIDN'T have two other children to care for.  I simply can't do the necessary number of ABA therapy hours alone.

After several days of spring break in the pointless cycle (screaming, stimming, screaming) with Cale, and with all of my desperate thinking - worrying about getting him the therapy, trying to figure out how on earth I'm supposed to do it all myself, trying to figure out how he'd be okay if I didn't find an ABA therapist, everything, all of it, trying to figure "IT" out!!! - I finally shut down.  I stopped everything completely and fell into a short, but suffocating, depression.  I got so sad.  Scary sad.  You know?  The kind where you can't breathe.

After four straight days of having an un-showered, crying wife and no clean clothes or dishes, my husband finally said, "Your being "down" is affecting the whole family negatively."

"So?" I replied, "My being "up" doesn't affect them positively."

He sighed.

"You need to accept that Cale may never change," he said patiently.

"I can't.  Time's slipping away.  What if he doesn't get ABA therapy this year?  What if there's no one to do it but me?  What if I can't give him enough?  What if he keeps tantruming or retreating forever and I always know it was because I couldn't give him enough?  It's unbearable.  What if I can't accept it?" I asked.

"Then you'll stay miserable," he answered.

"Do you think that God really exists?" I finally asked him.

He looked at me for a long time.  Because this isn't something I usually have to contemplate.  Then he put his elbows on his knees and started rubbing his hands back and forth, the way men seem to do just before they say something important.  Then he said, "It doesn't matter."

"Doesn't matter?!" I exclaimed.

"No," he continued, "My spirituality comes from acting like God exists, not from whether or not he actually does.  Being attached to whether or not God exists is no different than being attached to the outcome, the end results, of what happens with Cale (being attached to him talking some day).  You can drive yourself crazy with it.  There are just some things we don't get to know for sure.  But I see it this way - if I spend my life acting like God exists, and acting like Cale will talk (keep doing the footwork) then what am I out if he doesn't?  I've had a good life.  And I've done everything I could for Cale."

It took some time to wrap my few brain cells around that one, but I finally got it.  "Act like God exists?" I thought, "I suppose that's better then dying a slow, painful death on back porch sofa."  I pealed my ass off the stupid cushion, opened up my stupid swollen shut eyes, and got into the fucking shower.  It was a start.

Shane and I reviewed everything over the weekend and concluded that we've done all the footwork, done everything we can do for Cale up to this point.  Now we have to leave the outcome, the results, up to God. 

Shane's friend (and spiritual adviser of sorts) told Shane that this is the worst kind of surrender - giving the outcome for a child up to God.  He said it's one we'll probably repeat over and over again with our kids, and that Shane will probably have to accept that a "bout of depression" may follow each time.  My counselor calls it a "perpetual problem."  It's one that comes up over and over again.  In my case, a giving up on having it MY WAY RIGHT NOW for my kids, over and over and over again, each bout accompanied by, in my counselor's words, "a grieving process." 

Thank God for my patient husband and his friend.  I got through another play date with grief without the slightest lecture about the house being dirty.

So I'm "acting" like God exists.  I took Alden to school Monday morning and then put the other two on the bus.  Then I cleaned the house and it felt good.  I rested my brain on the way the oil soap sprayed onto the floor, about the way the mop moved over the wood, and about how nice the floors look when they're clean.  I dusted.  I wiped down each and every item in the house, which slowed me down and allowed to be appreciate and contemplate each object in this house.  That's how I found the painting from the closet.  These neglected objects were in need of my attention I think, and my attention was in need of them.  What a nice day.

I did hire a new hab. worker because I need the help.  She says she has no experience in ABA.  Sigh.  But who knows what will happen.  I've done everything I can do.  Now, "Cale getting ABA or not" is up to God.  If he wants Cale to talk then he'll make it so.  Maybe God will make it his masterpiece.  I don't know, but I'll be busy.  I've got a painting to spend some time with, some feet to get right. 

Maybe this painting will become my masterpiece.  And maybe it won't.  It's a beautiful painting irregardless.  I started working on it right after my very first pregnancy.  I had the miscarriage on August 3, 2002.  How do I know it was a daughter?  I don't actually.  I was only seven weeks along.