Perception

I have always been in love with art. It doesn't matter what kind it is. I love it all.

I remember signing up for my very first painting class when I began high school. The class was held in a second story, corner classroom of my old brick high-school. It was one of the original classrooms, had super tall ceilings with duct work hanging out of the plaster, and floor to ceiling windows along two walls. It was the sunniest, most magnificent room I'd ever been in and was the work place of an art teacher I admire to this day. He inspired my dream of becoming an art teacher myself and I have always dreamed of teaching in that particular classroom.

This teacher had collected a variety of art work from students over the years and these perfect pieces adorned the classroom walls with bright colors and an impressive sense of three-dimensional skill. I was slightly intimidated at the time and didn't think I'd ever be able to make art like that. This feeling, along with the encouragement of the teacher, drove me to give art making an honest try.

I immediately fell in love with the smell of canvas, paint thinner, and the ease with which painting came to me. Over the next couple years I proceeded to take every art class the school had to offer in a variety of classrooms not half as awesome as my original painting classroom. After I'd taken them all, I asked my school counselor if I could keep taking painting.

He told me I had to ask my original painting teacher for special permission to take advanced painting classes in his classroom. "Advanced" painting in high-school actually meant, "the same painting class over and over again." The only thing that actually "advanced" was my ability and that was a direct result of my teacher's ability to teach students with differing skill levels during the same hour. He let me in.

My goal in "advanced" painting was to paint photograph-like copies of various things. I'd worry about abstracting and creating "original" ideas through art later, but first I wanted to master realism.

I became obsessed with painting trees to look like trees, water to look like water, and faces to look exactly like the faces I was trying to replicate. I wanted a person to be able to look at my painting and say, "Oh! That's so and so!" I sucked at this by the way. It was never a natural gift and I had to learn how by working hard at it.

One day, as I was wrestling with painting an image of a tree I had a photograph of, my teacher came over to see what was wrong with me. "Why can't I get my tree to look like this tree?" I asked him, showing him the photograph and tearing up. It was right then that he told me a valuable secret. It's one I use to this very day.

"You're too busy looking at the details," he said, "See? You're perception of the whole tree is off as a result. Do you see how the whole tree is shaped like this in the photograph, but it's shaped slightly differently in your painting? As long as the shape of your tree is off then your details, no matter how accurate you get them, won't match the photograph. You have to look at something and see what's actually there instead of seeing what you think should be there."

I've just had a more recent lesson in this very same principle.

My Cale's newest favorite thing is the sound of shattering glass. I have been so threatened by this that it has seriously colored my perception of the situation. When you see a kid that shatters glass things, what do you think of? I don't know about you, but I see an incredibly disobedient and out of control child. I also see a bad mother who hasn't enough control to keep her child safe. The problem is that this mother is me.

Cale has always liked the sound of things crashing into the floor. He throws his plate of food on the floor with EVERY meal, not because he's not hungry, but because he cannot resist the sound it makes as it hits the floor. As a result he goes hungry a lot because at my house, once your plate of food hits the floor, you are done whether you're autistic or not. I don't care.

Lately it's become more of an obsession than usual. It's become more intense. It's no longer enough to throw his dinner on the floor. He actually wants to hear glass shattering. He waits until I'm busy with one of the other kids and then he quickly pushes a chair over to the counter top, climbs up onto it, grabs a glass or a dish, holds it up as high as he can and drops it onto the kitchen floor. If there isn't anything breakable on the counter top then he gets into the cupboard and gets out a plate or a glass.

He absolutely squeals in delight as it shatters against the floor and sends shards flying in every direction. Yes I know. He could fall. He loves to fall. In fact he jumps, arms flying into the air, off the counter tops. So far I've always been there to catch him. But, if I'm not one of these times then he could fall onto the floor. Into GLASS. He's broken almost all of my dishes.

We also have a balcony (loft, or whatever you want to call it) on our second floor that opens onto our living room. It's tall (we have tall ceilings) and is probably at least a one story drop (inside the house). We bought the house BEFORE we knew about Cale. He loves to hang things over the railing and drop them off the balcony into the living. Not stuffed animals. No. LAMPS. If someone ever walked in at the perfect moment...oh man.

I do have a time out chair that Cales hates that he's put into every time he does these things, but it doesn't seem to teach him to stop. I've always gotten this vague feeling that he genuinely cannot resist.

Any time I hear the distinct sound of a scooting chair, I run to the kitchen as fast as I can and catch him jumping off the counter. But there's not much I can do to predict the balcony thing. I've removed all the lamps but he's just found other heavy things to throw over. And the baby gate doesn't keep him from going upstairs anymore. He can just push through it (he is almost four years old). So I've told the other kids to just be very careful about walking under the balcony in the living room.

For Alden's birthday party on Sunday we rented a bouncer and someone landed right on top of Cale's head with all of their weight. He cried for a minute and then stopped, but kept grabbing at his head. I've always had a bit of a sense that he doesn't feel pain as intensely as he should, and that he can't tell me if or how bad he's hurt. So it's up to me to guess. Shane looked for an open Urgent-Care, but it was Sunday night and none were open. I seriously considered taking him to the emergency room.

I could just imagine CPS or an investigating police officer saying, "Someone landed on his head and he doesn't communicate or feel pain correctly? Why WOULDN'T you have that checked out?" Then I would try to explain what it's like to chase an autistic child around a gun shot filled emergency room for four hours late on a Sunday night. I can hear myself now, "Believe me officer, you'd risk some one's life to avoid that experience as well." I'd then be arrested and put away for life. Hmm. Oh never mind:)

I watched him for two hours for all the signs of concussion. I fed him a giant bowl of cereal and chocolate almond milk and he didn't puke. I also watched his pupils which seemed normal (but again with autism you never know if the body is reacting the way it should). I had nightmares all night about Cale not waking up the next morning. I cried and prayed, "Oh God, I can't do without my baby. Please, please don't let him be hurt."

The next morning I had an appointment with the developmental pediatrician. I told him about the incident and asked him to check Cale's head. As he ran his fingers over Cale's skull, he reminded me of the fact that Cale doesn't communicate and will not feel pain correctly. "Oh yes," he said, "he's got a heck of a bump back here but he's going to be fine." I asked him if I should've taken him to the emergency room the night before and he said, "Oh NO...it would be HORRIBLE to chase an autistic kid around an emergency room for four hours late on a Sunday night!"

The occupational therapist came last Friday to do an evaluation on Cale. He explained to me the difference between sensory SEEKING behaviors and sensory AVOIDING behaviors. And for some reason it wasn't until right then that it all became so clear.

"Oh my God," I thought as the therapist talked to me. Once again, it's a matter of seeing what's really going on instead of what I think is going on. Cale isn't trying to drive me insane. He's trying to get his needs met.

Isabel's autism is a bit different than Cale's. Isabel is sensory AVOIDING. Her senses are heightened. She feels things too intensely. She can't stand tags in her clothes. She feels movement too intensely and doesn't like to be twirled or do anything that might require balance. She also can't handle a lot of auditory stimulation for long periods of time. She can only stand a grocery store or a noisy daycare room for about an hour before she starts melting down. She also tastes and smells food too intensely which is why she won't eat much and is malnourished. She now sees a feeding therapist for this.

Isabel needs to avoid intense sensory experiences. She requires a lot of soothing sounds and quiet time. She loves to do quiet things like snuggling, reading stories, making art, and doing puzzles. She has recently discovered my piano which she plays quietly. Cale's screaming and chaotic behavior sends her over the edge. She plugs her ears and cries when he screams, which he does all the time.

Cale is sensory SEEKING which means he doesn't feel anything intensely enough. Therefore he seeks out intense sensory experiences. He screams just to hear himself scream.

The O.T. explained to me that Cale actually, physically NEEDS intense sensory experiences and will seek those out in any way he can. He told me he could give me some things to do with Cale for auditory stimulation. Then maybe he won't have to break my dishes and drop things over the balcony.

This explains why my baby doesn't respond to his name or any other words. He doesn't respond to most voices at all unless I yell at him. He actually loves it when I yell at him and will keep doing whatever it is I yelled at him about to get me to keep yelling. He actually WANTS the auditory experience. It's the exact opposite of how my other kids react to my yelling at them.

This also explains why he seeks out intense movement like falling, spinning, jumping, etc., and is why he loves to jump, with all of his might, off the counter top.

It also explains why he lays down and starts humping the floor when he's stressed. He did this right in front of an ABA therapist at SARRC one day and she explained to me that this is called "stimming" which is short for "self-stimulatory behavior."

"Yeah," I said giggling, "I've heard other technical terms for that one." I got embarrassed for Cale and picked him right up. He screamed, cried, hit me, and got so mad!!

"Geez," I said, "I didn't think interrupting him would be THAT big of a deal!"

Shane looked at me and said, "Sweetie, he's a boy. And he wasn't done yet." All three of us (including the therapist) laughed until we cried!

Thank God for the O.T. I really started to think Cale was just out to make me crazy. Maybe now that I can see what's really going on I'll be able to stop trying to punish him and try to teach him more appropriate ways of getting sensory input.

By the way, I did become an art teacher myself. I don't teach anymore. Now, I just take care of autistic kids. And I never did get to teach in that classroom (in fact my old teacher is still teaching in that same classroom), but during the year I taught I did get the opportunity to participate with him and a variety of other art teachers in putting together a district wide art curriculum. That was more than I ever could have asked for.

The other art teachers gave him a hard time for not remembering me. "How could you not remember a name like Womeldorf?" they laughed at him. I wish I'd told them all that I'd become a teacher because of him.

One of the evenings that we met to go over the new curriculum, we all met in his classroom. It was exactly the same. The same art work that intimidated me as a kid was still there adorning the classroom walls. It looked different to me though. Instead of an impressive sense of three-dimensional skill, I saw the shotty, rushed art work of stoned high school students. "Whoa," I thought to myself as I let what was really there sink in.

I really hope I can look back on the childhood of my children in the same way. Not so intimidated by the difficulty of it all, but as a seasoned autism mom with some experience to give away. I suppose I will if I can just keep remembering the secret of the teacher with the best classroom in the world.

Expectations

During one of our first dates, Shane told me he liked clean kitchen cupboards. You know? Actually wiped out underneath all of the cans and stuff. He was twenty seven when we got together. He'd been married once already and thought about things like kitchen cupboards. I was twenty two, still somewhat resembled a wild animal, and had never even once considered the state of a kitchen cupboard before this conversation.

"I agree completely!" I lied through my teeth, "I hate dirty cupboards."

Shane was the most gorgeous creature I had ever come into contact with and I really, really wanted him to like me. "I can keep cupboards clean," I thought to myself, "How hard could that be?"

I thought about that conversation this morning as, almost fourteen years later, I set the sugar jar down in the cupboard and listened to it crunch on the layer of crumbs underneath it. I was in the process of digging my way through the cupboard looking for birthday cake mix. We are celebrating Alden's seventh birthday this weekend and I have a hell of a party planned.

Alden has the same capacity for expectations as both of his parents do. Yeah, I know. This is going to make for a long life. So naturally, I'm a bit nervous about his party.

I've rented an inflatable bouncer for the back yard, bought Sponge Bob cupcake holders complete with toppers, balloons, streamers, little lollipops and blow horns as party favors, and invited about eight children and their parents over for an evening of bouncing and pizza in the shady back yard. However, most of the parents have R.S.V.P.ed and there are only about three children planning to attend the party so far. Oh, I hope this is good enough.

The first time Alden ever entered our house, he ran upstairs and thoroughly explored each bedroom. He found the master with it's garden tub, double sink bathroom and it's sliding doors that open onto a private patio, and he decided to claim it as his room. For the next several weeks as we closed on the house, he talked about having his own big bedroom with his own big bathroom in the new house. Unsure of what exactly he was talking about, I didn't tell him that the master would be Mommy and Daddy's room. So it got good and stuck in his head.

On moving day, as we began moving our bedroom furniture into the master, he told us in no uncertain terms that he had claimed the "big room" as his. Then he proceeded to inform me of exactly where we should place his bunk bed.

We couldn't help but giggle, of course, before telling him that the little yellow room would be his. The look on his face as the reality sunk in touched my stomach with a truly odd mixture of sadness and hilarity. I really had trouble believing it. My sweet, ballsy little son actually thought he'd get the master bedroom!

He cried about the loss for two days, periodically trying to get me to change my mind and give him our room. The poor little guy felt genuinely ripped off. I wonder sometimes if Shane ever feels like this about my housekeeping abilities.

Luckily, I know all about expectations. I have thousands of stories in which I've been deeply disappointed in things not going my way. I suppose keeping my expectations in check, ideally having none at all, is one of those supreme lessons in life that make for fabulous birthday parties, whether they are fabulous or not. Wish me luck.

Our Common Welfare

I have watched something bright in my son fade further and further away over the past two years. It feels like a traffic light in my rear view mirror during a soft rainstorm at night. The windshield wipers are making their frantic sounds, anxiously chasing the rain off the windshield. And through the noise the light is growing smaller and streakier and fuzzier and blurrier, the further I drive away. I'm afraid with all of my skin of the moment when all that's left is the tiniest hint of red, unsure of whether it's still a light or just a reflection of something else on the slick black street. And all that will be left is the noise.

Yet somehow I think that if he could talk it would take me in the other direction, letting the light grow bigger and redder and closer and brighter until I'm right up underneath it, commanded to stop by it's glowing, undeniable presence.

I finally got a call back from SARRC this morning about getting Cale evaluated so he can begin Specialized Habilitation (HabM/HabB). The woman asked me a series of questions including, "Cale has a few single words that he uses? Correct?"

"Yes. He did anyways, after your Jumpstart program," I answered.

"Oh good!" she said.

"He's lost most of those words again now though," I continued.

Silence.

"Oh it's okay," I responded automatically to the silence, "it was the first real hope we'd had for him in a long time!" Ooops. Here I was trying to sound encouraged, but I think I just ended up sounding pathetic!

The Jumpstart program has ended for us. While we were in the program, Cale made some real progress for the first time. He was saying some words, the disruptive behaviors lessened, and we knew when he started to slip up that we'd be back again the following Tuesday or Thursday for another round. But the program was only five weeks long.

Now I feel a bit like a baby bird that's been kicked out of the nest. You know what it's like to find a "nest" for an autism parent? It means so much more than anyone can ever say. But once again, like so many other good things throughout my life, it's over. Just like that.

"Goodbye and good luck," all of us parents said to each other on the last day, a mixture of desperation and sadness leaking out of our eyes just above plastic smiles. What is that look? The one in the eyes of autism parents? I know I've got it because my own face seems to draw it out in the eyes of others.

Shane and I recommended, in the evaluation of the program, that they put together a parent contact sheet for Jumpstart alumni. But I can't help but wonder if something even more organized than that isn't necessary for autism parents. There are support groups, but the ones I've been to seem to be all about the kids and "finding the next thing that will help the kids!" Am I just selfish to ask, "But what helps the parents?"

Anyways, this program called Jumpstart that's offered by SARRC (Southwest Autism Research and Resource Center) is fantastic and I highly recommend it to any autism parents. It was a five week long program during which Cale got five hours per week of ABA based therapy and Shane and I got five hours per week of parent training (all for $100. per week). Ridiculously cheap and must be subsidized in some way. It was single-handedly the best $500. I have ever spent in my entire life. It gave me an fantastic over view of autism, and provided some real live tools for how to begin our journey.

The two and half hour long classes (Tuesday and Thursday mornings) were divided into two parts. During the first one and a half hours, the parents would drink Starbucks and look at power point presentations (worth $500. in and of itself) while professionals worked with our children using the ABA based techniques that us parents were in the classroom learning about. During the last hour, us parents would get to practice the techniques with our own children utilizing one on one professional guidance.

The class covered ABA therapies (PRT, DTT, and PECS) as well as other issues regarding autism (disruptive behaviors, potty training, feeding and sleeping issues, quality of life issues, accessing state services, and utilizing the special education system).

Cale is still saying "pretzel" and "cereal" through a whisper, but I generally have to listen to fifteen minutes of screaming and breaking stuff before he'll say them.

I finally put a high chair in my office (that he can't knock over or break out of) and every time he starts screaming and breaking stuff I put him in there and shut the door so the rest of us can have some peace. I'm not supposed to punish him, but the rest of us shouldn't have to listen to screaming and cut our feet on broken glass (the constant sweeping can't keep up with my Cale any more). I really don't mean for the time out chair to punish him, I just need for the rest of us to be able to function. The fact that it punishes him is just sort of a satisfying by-product.

It's important to remember that Cale losing his words again is not a reflection of the Jumpstart program. If anything it's evidence that Cale might need ongoing professional behavior therapy. As good as the parent training was, obviously, Shane and I can't do all of this behavior therapy by ourselves. And, contrary to popular opinion, that doesn't mean that we're inconsistent and bad parents. It means we have five people to take care of in our family, and Cale is but ONE of them.

I'm sure it DOES mean we aren't consistent enough for Cale. Seeing as how ABA therapies require the consistency of a woodpecker's pecking and any slight variation means Cale loses anything he's learned immediately, and we do have two other children to care for, it is probably is our fault. But that is okay too. We're doing the best we can.

For the first year and a half of Cale's life, he was completely normal in every way. He was meeting all of his developmental milestones, he smiled, laughed, babbled, learned a few words, and sought us out for food and hugs. I found a beautiful photograph of him the other day sitting in a bright blue wading pool, water trickling out of his hair, and pretending to play a baby flute.

In the picture he's looking directly into the camera and he's using the flute correctly! He's got the tip of the instrument up to his lips and his fingers on the little holes. It's almost like he knows what it's for!

Now when he finds that same flute he throws it as hard as he can to hear the sound it makes as it's hitting the ground. And he doesn't have a clue how to use ANYTHING correctly. No really. It isn't that he's bored with how things are supposed to be used. He doesn't know. That information has been lost piece by piece down some invisible vortex.

He does still smile a lot, sometimes seemingly at tiny little ghosts that no one can see but him. He'll just stare into the corner and start laughing like an invisible little person has initiated a game of peek-a-boo. And his eye contact. Well, it has become fleeting at best.

I've watched him LOSE milestones, actually go BACKWARDS developmentally. It's happened slowly, not suddenly, and it has been agonizing to not be sure of what to do about it. Finding out what to do with autism is still such a crap shoot.

There are literally dozens of different therapies and supposed "cures" out there (and I haven't even touched bio-medics yet!) but there is still little to no medical research and support on what autism is and how we should treat it.  I've had a terrible time getting MEDICAL guidance on how to proceed. Speech therapy works for some kids. Occupational therapy works for some kids. Vitamin B12 shots work MIRACLES on some kids and do NOTHING for others. The doctor's say, "Well, you might try this or that, but there is no research that supports that this or that will actually make any difference." So, it's a total crap shoot. Everyone has their opinions, but no one has medical research to back it up with.

Western medicine isn't even sure what autism is. They cannot do an MRI and see where the neurological system has been damaged or in some way compromised (*later insert - they did a series of MRIs on adults with Autism in England this year and could physically SEE the Autism in their brains).  They have ideas, but they don't know for sure. Yeah. I thought we lived in the twenty first century too! And this brings a particular kind of pain to autism parents.

Right now I'm reading The Autism Mom's Survival Guide by Susan Senator. Read it. It's fabulous. In it she talks about what she calls "the Great Autism-Therapy Chase."

She tells us her experience and the experiences of other autism parents with regards to guessing about different therapies. One of the experiences is a story about a mother who has twins. One of the twins has CP (Cerebral Palsy) and the other is autistic. She says that with CP the doctors know exactly what to do. They had a plan for the child's ongoing medical care that they implemented immediately. No one ever claimed the CP would go away, but at least the doctors and the mother knew they were doing all that could be done. The mother knew she'd done (and continues to do) her part (and she knows exactly what that is) to help her child.

With her autistic child, however, she never knows if she's done everything she can do. There are countless things to "try" and there is no limit to them. And one is a "bad parent" if they "leave a stone unturned" right?

With no medical guidance, and Jenny McCarthy saying there's a "window" of opportunity (at a very early age) in which to pull your child OUT of autism, people panic. I know I did. I remember specifically reading her book and thinking "My kids didn't get early intervention. I guess the window is closed."

It is published everywhere (although medical research refuses to back it or anything else up) that "early intervention between the ages of 0-6 years old is crucial if the child is ever to make any real progress." And the states move at the pace of a wounded turtle to get an autistic child appropriate care (and they can get away with this because, again, there is not enough MEDICAL research to back it up).

So a lot of people believe they have a shockingly short period of time in which to help their kids. I remember feeling like I had JUST found out about my childrens' autism, but it was already too late to help them!

There are also a lot of people who would do anything to help their child at any age (and I'm one of them). But again, with no guidance from the medical community, there are countless stories of people taking drastic actions such as walking away from their homes, emptying their bank accounts, using all of their savings, racking up huge amounts of debt, ruining their marriages, damaging their relationships with their "typical" children, moving to other cities, driving very long distances, putting their kids through iffy treatments, and doing all but selling their souls to the devil, to get their kids the "needed help."

And the saddest part to all of this is that, statistically, most people don't see significant changes in their children. Can you imagine seriously damaging your life only to see little to no difference? It's really not like one can just do "this, this, and this" and know they've done all they can do. No. It's a bottomless pit that we have to decide how far we want to sink in to, always keeping in mind that it may or may not make any difference.

I use every bit of spiritual wisdom I can these days to make all these challenging and horrific decisions. One bit of this wisdom came to me the other day as I was staring at my bum in the mirror and wondering if I'm still cute enough to be a stripper (I'm not by the way, and probably never was to begin with but I really want to get Cale into SARRC's school program. It, however, costs $2600. per month).

After accepting a difficult truth about my thirty five year old mom bottom, I was reminded of a conversation I once had with a friend of mine regarding twelve step recovery programs.

Now, people are generally familiar with the idea of the "twelve steps" which are geared toward individual recovery, but did you know there are also twelve traditions which are geared toward group functioning and the twelve step program as a whole? One of the purposes of these traditions is to provide a group with a framework in which to make sometimes difficult decisions.

Tradition one is what came to me and it goes something like this: "Our common welfare should come first, personal recovery depends upon unity." Our family is a group and we all deserve to be happy and healthy. And Cale's recovery certainly depends on our family unity. Therefore, Shane and I have decided that we will never give up and we will always continue to try new things for both Isabel and Cale as we can afford them. But we will not hurt ourselves in the process and we will not let our happiness depend on the end results of these therapies. I'm practicing my ability to hope with all my hope without expecting particular results.

In addition to the therapies the state recommends (speech, OT, and PT), we are also always trying something new with Cale. And any time something brings positive results (even for awhile) we keep trying to do it. In addition to everything that brings positive results, we are also always trying ONE new thing at a time (as we can afford it). For us this is a practical and prudent way to proceed.

I know I have to make a place in my heart for the possibility of not seeing red any more. It's a kind of long, drawn out grief. Because my child is gone. But he isn't. But he is.

I really want to hold on to who I always thought he'd be. But he isn't that person. I watch typical three year olds run around on the sidewalk because they know the street is dangerous. They jump and color and play with toys (correctly) and they look at people and talk. They talk, and it makes me want Cale to talk to me. But Cale may never talk to me. There are many, many, many non-verbal autistic people in the world.

What a place to be. I can't give up or I'm giving in to despair, but I can't expect him to be someone he's not either. I wonder if I'll have to let my dreams for him go completely before I can really embrace the sweet little boy who throws the flute at the floor.

Motivation

I've been thinking about motivation this past week. Motivation to surrender that is. That storm that happens just before the calm, the one that throws it all into the air leaving permanent change for the calm to settle down on.

It's a topic that's come up several times like a child in need of attention. When I have a topic like this occur and reoccur over a fairly short period of time, it generally means that I need to stop and give it my attention. I need to pour it a glass of fresh chocolate milk, curl up with it in the rocking chair, and listen to it's message for awhile.

It started last Thursday when I was in PRT therapy with Cale. They begin each session by videotaping me playing with him for ten minutes. The goal is to get him to interact with me as much as possible during that ten minutes and then, when appropriate, set up language opportunities within that interaction.

For example, if he starts pushing the button on a music box, I'm supposed to cover that button with my hand and say, "push?" If he says "push" then I say, "YEAH!!! You said push!!" and let him push the button and hear the music (reinforcement). After the videotaped ten minutes, they give me feedback on how I'm doing and spend the next hour working with me and teaching me more ways to motivate him to talk.

We've been at this for the past three and a half weeks now. During the first three weeks this therapy managed to turn EVERY SINGLE communication attempt we had with Cale into a knock down, drag out, eardrum shattering screaming, head slamming, face scratching, no fun what-so-ever, fight. For him anyways. He finally said, "pretzel" but then stopped talking again. Pretzels are only mildly motivating apparently.

We were supposed to do this all day every day with him no matter how miserable it made our family. We were supposed to make him ASK for everything that he wanted and all he had to say was, "uh" to get it.

We did it (a lot anyways), and all he did was scream and scream and scream. It really hurt my feelings that talking to me could be THAT aversive for him. "Why is interacting with your Mama such a horrible thing?" I would ask Cale during his fits of total rage. Pretty soon I could feel my own resentment towards him swelling like a hot dog in the microwave.

After awhile the tantrums stopped, but he still wouldn't interact. Instead he'd avoid us entirely. If we'd cover the button, he'd just walk away. We'd follow and try to interact with the next toy and he'd walk away from that one too. And round and round we'd go. "Toys smoys," I imagined him saying to himself, "If it means I have to talk to YOU then I don't want it!" It would've broken my heart entirely if there were any pieces left that were big enough to break.

After three weeks of intense discouragement with no results (other then "pretzel"), I began to seriously question this therapy. It was quickly reaching "not worth it" status.

Then, of course, came the breakthrough.

During the initial ten minutes last Thursday, I did the usual and followed his lead (I went to the toy he lead me to) and attempted to play with him. And as usual, he just moved on to the next. He'd rather lose the toy than have to interact with me while playing with it.

Let me say that again. He'd rather lose the toy than have to interact with ME while playing with it. Can you see how the MIS-perception that autistic people "can't love" came into being? That description is still in the DSM-4. Yeah. We really need to join the 21st century regarding autism.

Around in circles we went for the whole ten minutes of videotaping after which I explained to the therapist that this was what it had become at home as well. I also explained that I have two other children, schools to visit, I.E.P.s to pick apart, teachers to find, therapists to find, doctors to see, appointments to keep, a state to fight a bloody battle with, laundry, etc., etc., etc. And I summed it all up with, "and I have very little time to waste." I'm so glad they're used to us parents.

She put her camera away and studied Cale for awhile. Then she gave me some suggestions regarding arranging the environment a little differently. Putting the toys up on a shelf, for example, where he can see them but has to ask for me to get them down. She said I could do the same with cereal, or anything else he likes for that matter. "So let's try it," she suggested.

We put all the toys behind a cupboard door and then I sat down in front of the cupboard, blocking the door. "Now wait," she suggested, "until he acts like he wants to get in there. Then say, "open?""

So I waited. I looked down at Cale who was laying on the floor crying softly. He was tired that morning and had been trying to get me to just hold him ever since we'd gotten into the therapy room. "Dang it Cale," I had thought during the first ten minutes, "we're supposed to be engaged with the toys here! Don't you realize Mama's being taped?" If you have any sort of need to look good to others and you have autistic kids, you're in luck. Autism will always take care of that problem for you.

He didn't care at all that the toys were in the cupboard. He didn't want the toys. Toys smoys. And that's when it suddenly, and for just a moment, became clear like a flash of blue sky between the rain clouds. What he wanted was me. And it had never before occurred to me to use myself as reinforcement.

He got up, came over to me, and sat on my lap. I started talking to him softly, "Hi sweetie. You look so tired." I snuggled him up. He put his thumb in his mouth, took my hand, and put it up to his arm (this is what he does when he wants me to tickle his arms real softly). So I asked, "tickle?"

He got up, screamed, and hit me in the face as hard as he could with both fists. My kids are so fast! They go from sweet baby to little demon in half a second flat. As a result, I have swollen or black eyes and scratches on my face all the time. I think there are people who sometimes wonder about my husband:)

"Ah haa!" I thought.

He kept screaming and hitting me in the face so I stood up and turned away. His cry changed from anger to anguish as he got in front of me sobbing, batting at my legs, and holding up his arms.

Now I've become a calloused, worn out, and crabby old mama but there is something about a crying child looking at me with his arms up that could move boulders inside of me. I prayed, "God please help," under my breath and it actually took an act of God to keep my arms at my sides.

Then I did something I wasn't sure wasn't the straw on the camel's back, the tip of the iceberg, the hole in the doughnut, oh hell...it just felt downright cruel. I looked down at him, almost shaking, and said, "up?"

He threw himself on the floor slamming his head into it repeatedly. "Sorry Cale," I thought, "that button's been disconnected by your sister." I knelt down and kept him from hurting his head without looking at him, which I've become a complete expert at. He kicked me in the face with both feet so I turned my face away, still keeping him from hitting his head. He kicked me in the chest and the neck a few times before I got him up against the wall in a position where he couldn't really move his head. Then I held him there and used my other hand to push his legs down.

He screamed and screamed and screamed during which the therapist said things like, "Good job," and "Great job," and "This is really good actually." My ears gobbled up and savored her praise because when I do this alone at home, I just feel like a terrible mother.

The tears tried hard to well up in my eyes, almost like someone was poking little holes in my eyeballs with a tiny needle. But nothing came out. I'm afraid I've done this so many times with Isabel that it's barely upsetting anymore. And now I have to do it with Cale. The tears couldn't come as I held my son down, and I started to wonder if the Arizona sun is turning my heart into leather.

Then the therapist said something I could hear with both ears and all of my experience, "I know it's hard," she said, "but the fact that he's so upset tells me that he's motivated. Now we just need to let him go through this painful process until he becomes willing to do it differently (ask for my affection in an appropriate way). And we'll just sit here and wait for him until he's done."

"Huh," I thought to myself, "I believe I've heard this somewhere before!" And that slid everything about Cale right into perspective for me. "Just wait until he's done." I don't have to feel bad. At all. And my chest lightened like someone pulled a truck off the top of me.

After Cale finally quieted completely, I held out my arms and said, "hug?" And he whispered, "hu." I picked him up and hugged him tight saying, "You said HUG, good job!!"

Cale started by asking for my affection for the rest of the day. He said, "tickle and hug" for the rest of the day! Since then this has expanded and he has said, "Isabel, Mama, let's go, go bye-bye, eat, candy, drum, blow, open, cereal, and drink" and a whole bunch of other things I can't recognize. He sounds like he's deaf when he talks but then again he hasn't had any speech therapy yet. And hell, if he'll just say, "eat" instead of wandering around screaming (leaving me wondering what in the heck he wants), it'll be a lot easier on my ear drums.

You know? I think I had to get motivated to surrender too. I had to surrender and accept that I have to raise autistic kids. Not unlike my son, I lived for awhile in the center of a giant internal tantrum of my own over this, which eventually became unbearably painful.

I didn't want to do it. I didn't WANT to raise children with autism. Just like Cale hasn't WANTED to talk. I denied it, I was slow to take necessary actions, I've been angry about it, I've bargained ("please tell me they're actually normal and that the doctors have made a mistake"). And around I've gone with these things. I still have it in my head sometimes that they're going to "pull out of this" some day. But in reality that's not generally how it works. So for awhile I raged in my tantrum, and I think God sat there waiting for me to get done.

I hate to say that I've surrendered now and that it'll all be okay because I say that one week and then the next fight surfaces (this week it's the state again as well as the school district) and I spin off again.

But one thing has become as clear to me as the air I breathe. I can't spend my life in a tantrum. I can't keep fighting the reality. I have to do it no matter how I feel about it. So I might as well surrender to it.

Through this process I've found out that my inner peace is the single most important thing in my entire life. Now that may sound silly, but if I have peace then my kids will feel that too and I'll be able to keep moving forward. Therefore, I need to do a bit of work to keep it in tact and I need to protect it carefully.

When I feel my skin peeling off because the state says, "You have to ask for that in a certain way to get it for your son," and "No I can't tell you how to ask for it," I need to do whatever it takes to keep my peace of mind. WHATEVER it takes.

I use prayer and meditation, inspirational writing, I try to view the situation from another angle, and I try to find people to relate too, maybe even someone who is having a harder time than I am who could use a little help. Parents with autistic kids ALWAYS need help and they're not that hard to find. When I do these things my skin stays on and my peace of mind comes back again like rain on a garden.

The gift of even a few words for Cale has meant a serious lessening in all of his stimming and other disruptive behaviors. He still likes to dip his arms in up to his elbows in pee filled toilets. But he's happier. So I know it has power for him of which he is not yet entirely aware, if he'll just keep surrendering HIS will and keep moving forward with it. I know somehow that this is true for me too.

It's a beginning for the both of us.

The Saguaro cacti are blooming by the way. Just today I noticed a tiny pink flower peeking out of the sharp green thorns.

A Baby Victory

Baby Cale finally said, "pretzel!" Actually what he said was, "Ah-eah!" Close enough. It got him the pretzel!

Cale has always made sounds. He even said some words at one point in time, but that was a long time ago. Then he lost those words down some neurological laundry shoot and they never came back. I know he can count to ten. Sometimes I hear him whispering to himself, "One, two, tree, fou, fi, sik..." But he has NEVER looked at another person and attempted communication before. It was the first time my son has EVER asked me for something.

I started to cry giant rolling tears I couldn't hold back and I slipped that pretzel into his mouth faster than the speed of light. He blinked his eyes and began to chew slowly while the realization of the new found power lit up his whole face. Then he said it again and got another pretzel, then again and another etc. He said it each time without crying, and he quickly realized that it was his sounds that where getting him the goods.

My baby! He asked me for a pretzel!

It happened in our one on one therapy session with the ABA therapist at SARRC. She smiled and clapped and said, "Good job Cale!" with the same amount of enthusiasm she has to show to each and every client all day long. God bless those therapists. Shane asked her on the way in if she had any kids and she said, "Uh NOOooo!!" and then quickly catching herself continued, "maybe some day."

Later on I found myself realizing that if I'd worked there before I had kids, I never would have had any. And I never would have known the pure and total elation of having my son ask me for a pretzel.

Consistency

The leaves on the trees are small in the desert. The bright thirsty skies have made them hardy, so they don't need much nurturing. Where the leaves are big they're trying to catch more sun and rain. They need more nurturing. Those plants don't survive here. Not without a lot of assistance anyway.

The little leaves here shimmer like snowflakes against the blue sky. Baby Cale loves to stare up at them with a great big baby smile, and will do so for as long as I'll let him. Meanwhile, I love to stare at him.

I love to watch the shadows of the wiggling leaves on his face, separated here and there by spots of yellow light. They seem to know he needs a little leaf ballet on his face to soothe him and let him know he's not alone. I'm not supposed to let him stare at the leaves. I'm supposed to "KEEP HIM ENGAGED," but honestly, how can I help it when the trees engage him better than I can?

The only problem is that the trees don't fill a cup when he needs a drink of water, don't set cereal out when he's hungry, don't change his diaper or put dry clothes on him or talk to him or help him color or open the container of Legos. And they aren't sitting at the dinner table with him when he screams and throws his food on the floor because he can't say, "all done." I am.

DDD came yesterday to talk to me about the hours of therapy Cale qualifies for. He can get speech therapy, occupational therapy, physical therapy, music, water, and horse therapy. Apparently horses heal autism. "Huh," I said about that as I felt the confusion crinkle form right between my eyes.

I asked about ABA based therapies, which some of the parents I've met at SARRC say their children have qualified for. Some of these children are getting 35 to 40 hours per week of ABA based therapies through DDD. ABA is an umbrella term for a variety of fairly complicated behavior therapies that can help children with autism learn to communicate more appropriately and consequently, behave more appropriately.

One of the hopes is to lesson disruptive behaviors (stimming and tantrums for example) so they don't interfere as much with their ability to learn what other therapists are trying to teach them.

I did inform my DDD case worker that some form of behavior therapy will be crucial for Cale before any of the other therapies will be effective for him, but she said that a child has to be under three years old to qualify for behavior therapy. Well, Cale is three and a half. So my timing is off again. Sounds familiar.

I can just picture a speech therapist trying to work with Cale. "Say ba-ba-ba," the speech therapist will say. And Cale will throw himself to the floor, slap himself in the face, bang his head, and scream at the top of his little lungs. Yup. And this will cost the state $150. per hour. Yet they won't provide behavior therapy. Oh but THANK GOD he'll get "horse" therapy. Shit.

Our only hope is for me to try to learn and implement ABA based therapies myself. I've already started the jump start class through SARRC and right now we're focusing on Pivotal Response Treatment (a therapy under the ABA umbrella that focuses on social communication via vocalization).

This therapy requires a form of consistency much like the green that fills each blade of grass in my neighborhood. I hope I can stay strong for the task.

This is what PRT looks like for Cale right now. The therapist says to Cale, "cookie." If he makes any sound that is filled with intent then he immediately gets a cookie. If he doesn't say cookie (or something) then he gets a cookie waved in his face but not given to him. As soon as he says, "cookie," (or "uh") he gets the cookie. Inappropriate behavior (like tantrums) are completely ignored. This is not complicated stuff.

Cale gets it. He knows what he's supposed to do, and it isn't too hard for him. However, I've been trying to get him to say "drink" all afternoon. I know he's thirsty because he hasn't had any fluid all afternoon. I'm following him around with the cup, handing it to him until he grabs for it and looks at me, then I hold on to it and say, "drink."

Instead of saying "drink" he has managed to send his sister to her room, ears covered, with all of his screaming. He's thrown every small household item we own, broken a lamp, and knocked over all the chairs. And this is after a WEEK of consistent PRT.

Right now, at this very moment, he's sitting on my desk screaming into my face with his big red drippy face and grabbing for the cup. But he still won't say drink (or "du" or anything appropriate for that matter). I'm turning my back on him, writing, and ignoring the little shit until he's done screaming at which point I'll again say, "drink" and we'll start the whole process over again.

It doesn't matter that it's dinner time and I've made nothing. Or that I have two other kids who are hungry, zoning out on the T.V., and need attention. It doesn't matter that the sheets need changed, the laundry needs folding, the dishes need to be done, homework needs to be done, etc. Nope. All that matters is that I hold this stupid cup and wait for a quiet moment to say, "drink.

A friend of mine told me awhile ago that practice makes perfect. I've actually been reciting that in my head today. It's been true in every other area of life, so it's got to be true for this too. What my son may not realize is that my will is infinitely stronger then his. We'll get this perfect. It will either end in him saying "drink" or dying of dehydration. All I needed was for a professional to back me on that for my will to solidify like concrete in a mold.

Cale seems like he'd rather go through hell then try to talk to me.  But I have to remember that it's his disease, not him, that keeps him away. It isn't personal. And my refusal to participate in his bad behavior isn't personal either. He'll figure that out.

I do love the weather in this wide valley of Arizona. It's spring all the time. And right now the Saguaro cacti are making a serious attempt to bloom. The big fat yellow-green buds poking out the tops promise to reveal blossoms I've never seen. Either they've never bloomed (since I've moved here anyways) OR I've never noticed. I'm not sure which. I'm usually too self-absorbed to notice anything on the tops of plants.

Better Thinking

Some people say that God has a sense of humor. I wouldn't call it that. I don't think that God is trying to be funny at all. He does however, know just what I need, when I need it, even if I don't agree with him on what that might be.

Medicaid officially denied Isabel for the second time. I got the letter late in the afternoon last Thursday. I guess that autism, head banging, feeding disorder, and failure to thrive physically, aren't really that bad after all.

Instead of helping her now while she still has a chance of becoming a self-supporting adult some day, they've decided to wait, possibly until she's an adult and can't work because she didn't get early intervention as a child. Lovely. Then they can take care of her for the rest of her life. What an utterly fascinating decision. I apologize for the sarcasm. It's really not a pretty color on me.

It's left me with a sense that another piece has fallen out of the bottom of my support structure. I've got quite a few holes in this thing these days. Not only has it become down right rickety, but there's a big heavy ugly chunk sitting on top of it.

Isabel sits in that odd place on the autism spectrum. The center, the gray area, that spot right in between too sick for regular school and too well for state help. The professionals are screaming at me to get her therapy, but the state doesn't think she's that bad. My sweet girl. What am I going to do with her?

Alden (my dramatic one) spent the night at his Grandma and Grandpa's motor home on Friday night. He always screams, "MOOOOMMM!!!" if anyone goes near the front door. But he was gone and I forgot. I ran upstairs for five minutes, and Isabel opened the front door and let Cale out. Now, Cale doesn't sit in the middle of the spectrum. He sits on the bottom.

The neighbor almost hit him driving up to her house on her way home from work. She parked, got out, picked him up, and wrestled him to my front door (he fights hard when he's interrupted from doing what he wants to be doing, in this case - running around in the street).

She looked half traumatized as she handed him back to me saying, "He was running back and forth in the middle of the street! He took his pants off while he was in middle of the street! They were already off when I got to him! I didn't hurt him, I just didn't think I should leave him out there!!"

I actually kind of laughed. Isn't that terrible? It was such a horrible experience (and it's the second time it's happened in the last month) that I just get to where all I can do is laugh. I suppose my old "I should be a better mother" feeling rolled around in my stomach for a second, but my nerves are so fried I really struggle to muster up the appropriate guilt.

"It's okay," I said, "I know you didn't hurt him. He's autistic, needs behavior therapy, and doesn't leave his clothes on. I really appreciate you getting him out of the street and bringing him back."

She did not look happy. I might actually have CPS called on me for the first time. That's okay. Maybe if someone besides me starts crying, "WOLF" I'll actually get some support.

I looked at Isabel and said, "Sweetie, you cannot let Cale out of that door." "Okay!" she replied. This is her catch all phrase for when she doesn't fully comprehend what you've just asked of her.

Cale did qualify for Medicaid, but the soonest DDD could do an appointment with us was two weeks from the date he qualified (they move at the speed of a small snail). They're coming this Friday to figure out how many hours of therapy per week he'll qualify for. I just have to wait. I'll get help with him soon and I'm holding my breath.

I wish I could describe the anger I felt towards God and this state after I read Medicaid's denial letter for Isabel. I wish I could weave it into some glorious combination of words, giving the feeling a beautiful expression. But I've never read a beautiful description of anger, nor do I have the power to turn the black sludge into something it just isn't.

I'm afraid I'm in danger of becoming a deeply embittered, crotchety old woman in a black dress, back humped, and hacking unintelligible smoker's noises at people as they walk by. Do I want to turn into someone that no one can stand to be around? Maybe. Then I could move to Paris by myself and wander the Louvre all day every d... oh wait. No, I don't:)

I'm not a person who can afford to be angry (at God especially). If I throw scraps into that fire it'll just grow. It's already being fed with the pieces falling out the bottom of my support structure. I must focus on the remaining nails and wood, in spite of the fact that the pieces keep falling off.

When anger surfaces I have to pray immediately for it to be removed. Now, I can't expect it to dissolve like Alka-Seltzer just because I ask for it to. But if I'm willing to set it aside and ask for God to show me the truth, typically the truth comes which heals the anger from it's source. It took me a few days this time but the truth finally came.

The idea that God and this beautiful state with it's blooming cacti couldn't care less about my daughter, left me staring straight into a flaw in my thinking. I don't much like addressing flaws in my thinking but this particular one harasses me to death, much like my son trying to con me out of a glass of chocolate milk. The flaw is a "perpetual problem." This is what my counselor calls it. A perpetual problem is one that doesn't go away and must be addressed again and again as it surfaces in each new situation.

The flaw in my thinking is this: If God cared about me then he'd... (fill in the blank). If he, she, they, it, cared about me then they'd... (fill in the blank). If... (fill in the blank) happens, then I'll be okay. And if it doesn't then I won't.

I was driving down the road the other day to go meet Shane for lunch. Cale was quiet so I got thinking about a friend. This got me thinking about my relationship with God which is usually a good thing, but I was feeling really mad at God. And the problem with being mad at God is that I need him. Bad. I need to believe that he loves me and that he has a plan for my kids. So, I decided to try to view my relationship with God as a friendship for a moment.

I started thinking about my friendships in general and I realized that I'm such an all or nothing kind of person. If a friend treats me the way I want them to then I feel important and loved, but if they don't then I don't. Yeah. And what's really broken about this, is that this is how I have tried to function in my friendships for a very, very long time.

I think that people must either love me or not care for me at all (in my human relationships it's probably, realistically, somewhere in between) and I base this love or not on my perception of how I'm being treated.

The problem with this is that I've never been very good at figuring out what's an appropriate amount of love in a friendship. I tend to try to make it too big or too small, when it should really be the just the right size. I (my ego) should be the right size. It's not all about me (and it's not all about MY kids). It's my perception of God's love that's off, that it has anything whatsoever to do with whether or not things are going my way. The way I see things is often so limited.

If I say, "If God cared about me then he'd make Medicaid give Isabel therapy," it's a bit like my son saying that if I cared about him, I'd buy him the candy bar. I do care about my son AND I'm not going to buy him the candy bar AND he doesn't necessarily get to understand why.

This thinking flaw makes a couple of assumptions that just aren't true. The first, of course, is that things need to go the way I think they should in order for me to be okay. That people, places, and things need to line up in a particular way, in order for me to be okay. They don't, and ironically, I'm still okay. The second assumption is the REALLY self-centered part; that it's personal when they don't.

The physician that reviewed Isabel's case and rejected her, didn't know Isabel at all. Whether or not he/she "cared" about her is completely irrelevant. He/she wasn't rejecting her personally. It hurts, and I don't know what it will mean for my family, so I want to take it personally. But why do I have to make it some one's fault when I've been damaged? Damn it! I really, really want to make it that physician's fault!

The same type of thing occurred with a group of my friends recently. I asked them for help with my kids and they said, "No." I'll spare you the details but, to make a long complicated story short, it was going to be too hard to help me.

It wasn't personal and that I quickly came to understand and accept (sort of), but afterward no one ever called to see if I was okay. That part felt personal. They knew I had just found out my kids are autistic, that my friends couldn't help me with it, and that I had to be feeling hurt and alone. But, not one of them ever called.

In a state of self-pity, I called a friend of mine in Montana and told her about it. I remember saying to her, "I've been hanging out with these people for almost four years. Do you suppose that I made them mad? Do they hate me? Or do they just not care about me? I know I shouldn't separate myself from people, but how can I NOT?"

She sighed and said something like, "I wish so badly I was there with you and I love you very much, but it isn't their fault. You know their decision wasn't personal. As far as them not calling, well, I'm sure it's neither that they hate you or that they don't care about you. They probably think you're mad, which you are, and they probably don't know what to do with that. People don't always know what to do for a friend who is hurting, especially when that hurt is coming out sideways all over the place. I wish they did, but they don't."

That group did me a favor actually. It's taught me to deeply value the love and support that I do have in my life.

I had someone tell me recently that when you have special needs kids, that's when you find out who your friends are. I do find that to be true. Later on a few of the people out of this group of friends decided to help me after all. It wasn't in the way I had originally planned, but it has turned out to be a very precious piece of my support structure. I've come to discover that no matter how hostile the world feels sometimes, there are always a few big hearts with a capacity to love giant love at the toughest possible time. When it's inconvenient.

Things will not necessarily go the way I think they should even when it looks really, really important to me that they do. And it isn't God's fault. The other day, I was watching my children fight viciously over who had more happy meal toys. It was clear to me that I had nothing to do with their argument and I thought it was a stupid thing to fight over. I said to my kids, "No matter the outcome of your argument, I will still be here make sure you both have enough happy meal toys:)"

Suddenly I could picture God as this parent figure watching me fight with Medicaid over therapy funds, and I realized that I'm not fighting with God. I'm fighting with siblings. People I have to share this planet with. I also realized that no matter the outcome of my argument with the state, God will still make sure that I (and my children) are taken care of somehow. Oh thank God I don't have to be mad at God. I'm still working on not resenting the state.

The biggest gift in all of this, of course, has been the shift in my thinking. I'm still trying to grasp fully that my faith needs to be in God, not people or circumstances. Maybe my support structure needed to loose it's weakest pieces so that I can focus on the pieces that are working and strong and growing into something that can support this time in my life.

Shane got the job at the community college. He'll be working his usual ten hour days and IN ADDITION he'll be teaching from 6-10pm three nights a week. God that's a lot of hours. But it'll pay for Isabel's therapy. And I've got to make a more serious effort at getting stuff published. I've started ABA training for Cale and will be able to implement that round the clock for him and Isabel in the home. I'll have to write after the kids go to bed from now on. Pray for us. It's going to be a long and happy year.