Chapter 2

Chapter Two

"I want to take the pre-conceived out from underneath your feet..."

Jack Johnson

I seemed to be moving in slow motion. Each movement, every action I took with my body and hands felt forced, heavy, and almost pretend. It reminded me of the day after surviving the stomach flu. I felt grateful to be out amongst people, but not quite physically up to the task yet. Still, it beat the alternative - laying in bed not moving at all.

“Let’s see now. White flour? Check. Sugar? Check. Vanilla? Check. Lard?  LARD?!  Hmm,"  I said to myself, stopping mid-aisle.  "No wonder I gain seven pounds of butt every year at Christmas time!" I continued, putting my hand on my thirty-five year old mom bottom and turning around to see if I could catch a reflection of it in the metal flashing between the shelves.

I made my way up the aisle looking up and down the shelves, "Do they even sell lard anymore?  Oh...yup.  Here it is.  Wow."

I finished gathering my cookie baking supplies and got in the "ten items or less" line to check out.  I can always gather useful information about what my spiritual barometer is set at by whether or not I count the items of the person ahead of me.  If I count them I'm a little on the spiritually ill side that day.  If I don't count them, notice, or care at all, then I'm in good shape.

"Don't count his items," I said under my breath.  "Don't count them.  Don't count them...one, two, three, four, five, six, seven, eight, nine, ten, ELEVEN.  Damn it!  No resistance at all today."  I smiled politely at the man as he walked away carrying his bag of eleven items and then dropped my basket onto the counter with a plop.

I handed my card to the check out clerk. She batted at a few of the buttons on the till with her long, white fingernails tipped off with red sparkles, her dark hair pulled to the top of her head and cascading back down around her neck in long shiny curls, and chewing her gum like it was a violent little glop that deserved it. Boredom dripped out of her dull green eyes and landed on my baking supplies while tiny silver store keys tinkled as she moved, fastened to her arm by what looked like a strip of black telephone cord. She threw my supplies in a sack, handed me the receipt, and dropped me an apathetic, "Have a nice day."

Heaping, fat mounds of winter covered my home town of Billings, Montana on Christmas Eve last year. The cold of it chewed down to the bones of this Montana native as I realized how accustomed I'd become to the warm Arizona sunshine. We'd come home for a holiday visit and were staying with my husband's parents, a blessed retreat from our tract house and tract lives.

As I walked back to my vehicle armed with the thought of baking Christmas cookies, the unforgettable wet soaked into my socks and I found myself longing to thaw out on a piece of hot concrete next to a swimming pool and paint my naked toenails bright red. The discovery that I preferred the heat to the cold caught me by surprise, not unlike the discovery that the skill of scraping my windshield with a credit card came back just as naturally as the art of riding a bike.

It seemed contrived at first, the way the snow lay over the hills in giant white sheets covering up the ground with all these distracting little sparkles and pretending like nothing was frozen underneath it. But as I drove back to my in laws' house I relaxed my back into the heated seats and let myself believe the beauty of the snow. Life as usual was carrying on, even though my life, the one I'd always dreamed of, was gone forever.

The houses seemed strained under the weight of their covered roofs. Brightly colored Santas and reindeer adorned peoples' yards and drew attention away from the stark and frigid tree branches above them, and the bushes were giant snow cones stuck into the ground, their blankets of ice all lit up by the twinkle lights underneath in soft patches of red, blue, green and yellow.

From every direction Christmas cheer was forcing it's way through the sub-zero temperatures and seeping it's way into my awareness. I welcomed the cheer with a quiet desperation, for I had just come out of a long inward slumber. I don't remember a lot about the weeks that preceded. I know that I had learned of my youngest child's autism after only having just learned of my middle child's autism, had found myself in a state of shock so thorough I wasn't sure it wouldn't be permanent, and I had spent several weeks really struggling to get out of bed.  I felt like I had been blind-sided.  Not only was I hit with the fact that my children would never, ever have normal lives, but I also couldn't believe that I hadn't seen it.  How could I have been in that much denial?

Looking back it all made sense, the developmental delays, the tantrums and self-harming behaviors, the stemming, that incredible distance in their eyes that tore chunks out of my heart when I tried to play with them.  Sometimes I'd shake Cale and scream inside of my head, "WHERE DID MY BABY GO?!"
But I did not want to know what was really going on.  I kept telling myself it was temporary and that they'd grow out of it.  In fact, the worse their behavior got the harder I worked to deny that something was wrong.

Upon getting the autism diagnosis for both Isabel and Cale, I was confronted with all this incredible guilt that I hadn't acted sooner.  Why, why, why, why hadn't I acted sooner?  I'd majored in psychology in college.  I knew a little about autism.  But more importantly, I knew a lot about the power of denial.  I'm afraid I'd come to view the whole subject of unconscious motives as a bit of a joke.  Now I wish I hadn't.  But where had these unconscious motives come from?  Why was I so afraid of autism?  Oh it just made no sense.

After spending several weeks in bed trapped in all of these thoughts, overwhelmed by an ass-kicking bout of self-pity, I had heard from a lost friend which brought me half way back to my senses. My eyes still burned from all the crying and I had begun to wonder if they'd turn a permanent shade blood vessel mauve.

 *

I got back to my in-laws' house and put the kids down for a nap. Alden, who was six and a half years old by then said to me as he laid down, "Big kids don't take naps Mom." I kissed him tenderly and replied, "I love you sweetie, but nap time saves children's lives."

Isabel, who had just turned five, snuggled up to her brother in her stiff, clumsy way and put her thumb in her mouth. Thankfully he tolerated it again. Baby Cale, who was almost three and a half years old and still confined to a crib for his lack of ability to stay in one spot, fell asleep immediately. I'm sure this was due to the strange barometric pressure and the comfort of being surrounded by his grandparents' love.

I began baking Christmas cookies with my mother-in-law that afternoon and didn't cry. I talked about the snow on the ground instead as I cut little stocking shapes out of shortbread cookie dough. My thoughts were trapped in this incessant loop:

"Two of my kids are autistic. And the world hasn't stopped? How can everyone just carry on like nothing's happened? Why, God, would you give me autistic kids? I don't know what to do with autism, I have no experience with it.  Two of my kids are autistic. And the world hasn't stopped? How can everyone just carry on like nothing's happened? Why, God, would you give me autistic kids? I don't know what to do with autism, I have no experience with it."

This loop had gone on for several days and was finally interrupted by an extremely loud thought as I pulled the cookies out of the oven. The familiar smell jolted a load of memories from my childhood all at once like happens when one's life flashes before their eyes just before they die, or happens just before a much needed answer. The cookie recipe was my mom's. She had made the same cookies at Christmas time for as long I could remember.  And the loud thought was this, "You know what to do with autism. You've lived with autism your entire life."

"What?!" I said out loud. 

My mother-in-law answered, "Oh.  I said that everyone's planning to come out to the house in the morning for Christmas day.  That way, you guys can spend this evening at your grandmother's house for Christmas Eve.  Does that sound okay?"

"Oh," I said, realizing that we were still mid-conversation, "Yes, of course.  That sounds fine honey, thanks."

I thought that my head was clearly completely out of control, so I chalked the "loud thought" up to being post inward slumber craziness and went on about the day eating freshly baked cookies and wrapping the children's presents in green paper with tiny little snowmen it. The snowmen had little black scarves and orange, carrot shaped noses that sparkled with glitter. "Hmm," I thought to myself upon noticing the snowmen, "How many times have I noticed sparkles today? Maybe I'm a bit autistic myself. Or maybe it's just Christmas time and sparkles are abundant this time of year."

I completed wrapping the sparkly presents, wrapped the cookies in sparkly tin foil, put sparkly bows on everything, and later that evening walked out to the car with Shane and the kids through layers of sparkly snow. As we finished loading the presents, cookies, and children into the car, Alden said to me, "Mom. The snow is so sparkoly and pretty."

"Hey!" I snapped at him, "You're not autistic."

Shane looked at me with his soft eyes and smiled.  He always gets my strange thinking. Or tries to at least.

"What is aoutissc mean Mom?" he asked.

The tears filled my eyes so fast I couldn't believe it. "Ask me later sweetie," I replied.

* 

We arrived at my grandmother's house and I finally started to warm up.  Her house is always a warm, steady 80 degrees year round.  Everyone got up, talking to and hugging each of us as we came through the door.  I dove head first into the particular sounds of my family, all smiling and talking to each other at the same time.  I wish I could describe these sounds to you, but they're indescribable.  I devoured the love and filled my homesick spot with all the love and attention from my family.

Stockings from the sixties that belonged to my mother and aunt when they were kids hung above the gas fire that was burning artificially behind the glass. My grandparents used to have a real fireplace that burned real fire at Christmas time. And, for the first time ever, I found myself feeling grateful for modern household technology because of Cale and his complete inability to stay away from dangerous things. He went straight over to the fire and put both hands on the glass. And I didn't have to worry.

The best thing about my Grandma's house has always been that things don't change quickly there. Everything is always in the exact same spot and the holiday traditions are always in the exact same order. It can be counted on. The house has always been decorated fifteen years behind it's time. In the late eighties, it boasted an array of orange and brown flowers. They were everywhere. On the couch upholstery, the curtains, and sticking out of wavy shaped, green glass bowls. Now a days, the house has the late eighties, overstuffed, Lazy Boy furniture that looks like someone flicked at it with a paintbrush full of mauve, blue, and hunter green.

The forty five year old Christmas ornaments dangled faithfully from the branches of the new Christmas tree, their faded chrome not half as shiny as the new glass balls beside them. And the little wooden manger with only a few shreds of straw left on it's miniature roof sat under the tree on a cotton tree skirt that was covered in red and green sparkles.

Baby Jesus and his parents had the misfortune of having their bottoms glued to the floor of the manger by my grandmother a least thirty years ago, which is probably the reason they weren't stolen and discovered years later in the heating vent of my parents house along with Legos, tiny farm animals, and other forgotten items that were once treasured possessions of my brother and me. It took my kids approximately thirty seconds to discover the manger and try to free the figures from their super glued perches. I didn't worry. No one has ever been able to free baby Jesus.

Everyone was there already with one exception.  My brother, only sibling, and best friend during childhood, was late.

"Hopefully your brother's coming," my grandma said to me, "I called him and he said he'd be here, but you know how that goes sometimes."  Her smile was genuine but the crinkle between her eyes suggested that she was worried about him.

"He's okay," I told her, "He's probably doing his Christmas shopping right now."

Everyone looked at me and chuckled so I chuckled too.  But I wasn't kidding, nor was I making fun of my brother.

Believe it or not there are multiple layers of social understanding to present buying and every other thing we humans do or don't do.  And there are multiple subtle, unspoken social "rules" based on each and every single layer of social understanding.  These layers are learned by most of us intuitively, not cognitively.  In other words, we learn them without having to think about it.

However, if a person has a deficit in picking up on the subtleties of social cues, then they must learn these layers cognitively instead of intuitively.  This is a slower, more tedious process and is often heavily influenced by all kinds of internal and external variables.  So, that person might live their whole life completely missing whole chunks of common, unspoken social "rules."   

The first and most blatant "rule" about present buying is that you don't buy presents at the last minute because it's not only strategically difficult and might make you late, but it's also not very thoughtful and might even be perceived as outright inconsiderate.  It's not only inconsiderate of other peoples' time (if you're late), but it's also inconsiderate because it shows that you didn't think of the people until it was time to actually see them.  People like to think they're thought of before Christmas actually comes.  It makes them feel loved.

The second "rule" is that if you do buy presents at the last minute (which most of us actually do at some point in our lives), you don't tell the people you bought their presents at the last minute.  To actually tell them you bought their gifts at the last minute would be perceived as inappropriate, and might even be perceived as not caring about the peoples' feelings.

Even if you do buy a gift for someone at the last minute and don't tell them about it, there are still all these tiny little clues as to when the gift was purchased.  When one has procrastinated, that person might buy a bigger and fancier the gift than they would've ordinarily because of guilt or simply because they were out of time.  Or they might buy something that's not extravagant enough.  So, the more or less extravagant the gift (the determining of which has it's own set of social "rules" separate from this one that have more to do with thought and effort than timing), the more likely it was bought at the last minute.  The timing can also be revealed by how well the gift fits the personality of the person and by how or if the gift was wrapped.

Even all of this is actually quite easy to cover up with, "The mall has been so crazy the last few weeks!  I do hope you like what I got for you," which gives the implication you searched for weeks for an appropriate gift, but alas had to settle for something too extravagant, not extravagant enough, or something which doesn't quite fit the person's personality.  And a gift bag is today's easy way around the wrapping thing.  Your implication may not be totally honest, but it is better than the truth.  Sometimes peoples' feelings are more important than the truth, and sometimes the truth is more important than their feelings.  There are more "rules" for determining which is which for this too.  

This brings me to the final "rule" which is that people (especially older family members) probably don't actually care that much what it is you get for them.  And they probably don't care whether or not you thought of them "weeks" before.  But they do want to think that you at least put some thought into their gift.  Of course it's ideal if you actually thought of them weeks before and put thought into their gift.  But, let's face it.  There are times that it just doesn't happen.  And when it doesn't happen, you should at the very least pretend it did.  I should also mention that each family may have different ways with these "rules."

Once you put all of these "rules" together, you must make educated guesses about when to buy each person's present.  Because there are no guidelines for this.  After years of experience in trying to buy presents at just the right time, sending cards at the perfect moment taking mail time into consideration, etc., you can then joke about it when you or someone else messes it up.

We're not supposed to buy gifts at the last minute, but it's common knowledge that everyone does it sometimes.  And that's why we have the "rule" about not telling them that, and the one about pretending we'd put some thought into them and their gift even if we didn't.  So when someone makes a comment about someone else screwing up the "rules", it's viewed as making fun of them.  A harmless little jab extrapolated from a slightly inappropriate social situation.  That's why my comment was funny.  That's why everyone chuckled.

These things take years of experience to learn and confuse most people to some degree because each family is different, each person is different, and each Christmas is different.  Now, imagine how hopelessly confusing these layers would be to a person who couldn't even comprehend the basic understandings underlying the very first social "rule" about present buying within the context of his/her own family.

Not only does my brother see nothing wrong with buying Christmas presents at the last possible minute leaving the whole family waiting for him on Christmas Eve., but it honestly makes no sense to him why one would do it any sooner.  After all, when exactly is the appropriate time to buy Christmas presents?  No one can really say.  And what does present purchase timing have to do with love anyways?  Also, if some people at some times don't follow the first "rule" then why is it a "rule" at all?  Obviously, it's not something people really take seriously so why should he?  And if the "rule" really is that important and everyone followed it all the time then there would be no need for the complicated second and third "rules" and the world would just make a hell of a lot more sense.

If one could get him to believe that it actually is more considerate (and that perceived consideration is important) and that present purchase timing really is one of multiple thousands of ways that people determine how loved they feel, and if that same someone would tell him exactly when to buy Christmas presents each year, I have no doubt that he would buy the presents at exactly that time every year like clockwork.  Because he loves his family very much.  But, he doesn't understand the subtle variations of consideration, the variations between "loved" and "more loved."  He understands these variations to some extent cognitively, but he doesn't understand them intuitively, experientially, or emotionally.  He just doesn't think that way.

I'd tell him about the "rules" regarding Christmas present purchasing (and have made countless attempts at such things during our childhood together), except that it would resemble someone who was a master of painting landscapes trying to take a physics test without studying first.  Having to learn these thing cognitively would require memorization, time, and lots and lots of practice.  For every single layer of every single social understanding that makes up each unspoken social "rule."

It's got to feel hopeless to try to learn all these "rules," within which there are more "rules" that sometimes people follow and sometimes they don't.  Why take any of them seriously?  How is one supposed to guess what they are, when to follow them and when not to, and why do they exist anyways?  And why do people laugh at you or get mad when you can't figure it out?

I'm afraid that my brother has no idea about the first "rule" regarding present purchase timing, let alone the second or third.  And I think he gave up on understanding most such things a very long time ago.

We started in on the massive array of holiday appetizers my grandma had prepared.  Crackers of every kind, cheese balls, mixed nuts, cookies, and coffee.  We never eat dinner on Christmas Eve.  We just munch on finger food and open presents, the best part of the holidays in my opinion. 

I picked up one of the shortbread cookies I'd made and asked, "Did you realize your cookies have lard in them Mom?"

"Sshhh!" she answered.

We waited about forty five minutes and just when we started talking about opening presents without my brother, the bell rang and he came through the door walking in his stiff, clumsy way.  He had an arm load of gift bags and three unwrapped boxes for my kids which he set down under the tree so that he could politely tolerate hugs from each family member.

"Sorry I'm late," he said, "The mall was crazy."

Harmony Lane (maybe) - chapter 1

I wanted to buy our house because it's on a street called Harmony Lane.  Such a sweet name for a street isn't it?  At the time we bought the house we had pieces falling off from all around the edges of our comfortable life. A life, an illusion actually, that I was still trying desperately to keep in alignment with everything that I'd ever thought was good and happy and full of the things it was supposed to be full of.  I thought our immediate problem was that we didn't have a home of our own.  I didn't know yet what was actually wrong, why the pieces kept falling off, or that the illusion was about to come to an end. All I knew was that living in on Harmony Lane might just make everything all right.

The realtor that helped us buy our house was a grandmother. I remember this because she talked happily and at length about her grand-children and didn't seem at all impatient with my kids the couple of times we dared taking them to look at houses with us. She was in beautiful shape in spite of the grandmother label and wore sleeveless white button down shirts, jewelry that sparkled against her tan skin, and a soft, patient smile.  I had become intensely discouraged after searching the entire city of Phoenix, Arizona for an old house in a neighborhood that we could actually afford.

I was born and raised in Billings, Montana.  A place that up until we moved to Phoenix four years ago, I had never intended to leave.  Billings was my home.  I knew everything about it.  I knew every nook and cranny of every public building, every side street, alleyway, restaurant and place of business.  I've spent time doing a variety of naughty things in every single cave of the one interesting geological feature in the entire area known by locals as the Rimocks. I knew each tree in every local park, each curve on the patch of the Yellowstone River that goes by town, and how to locate every single hole on the bottom of the one remaining public swimming pool.

I always thought I would live in Billings forever.  I never even particularly liked traveling and would feel an empty spot drilling into the bottom of my stomach, a longing for home, whether I was traipsing though magnificent places like the Louvre in Paris and the National Gallery in London or simply taking a day trip to the nearby town of Bozeman for a visit with an old friend.  Upon getting back to Billings, my homesick eyes would always devour the familiar and drop it into that spot in my stomach, leaving me filled once again with a deep sense that I was right where I belonged.  "It's nice to be home,' I'd say, trying not to seem too dramatic and hiding the fact I'd almost starved to death from the lack of familiar things.

Old houses were a dime a dozen in Billings.  I had owned three of them during my lifetime before I had kids, every one of them built in 1917.  I had never once even considered owning a new house.  The reason for this is very simple.  I wanted to listen to the creaking sounds of sunny hardwood floors as my future children played hide and seek while I did laundry in the basement.  They'd hide behind old oak doors framed in warm wood moldings covered with a patina it takes almost a hundred years to achieve.  Soft, muted colors on old plaster walls, white hexagon shaped tile and the old claw foot in the bathroom, and the smell of freshly baked whole wheat bread would feel normal. 

They'd walk home from school on autumn afternoons and crunch with their feet the leaves on sidewalks in front of houses built in a variety of architectural styles.  Craftsmen Bungalows, Victorians, Tudor revivals, Southern Plantation revivals, Dutch Colonials, etc.  They'd know each house on their block for their unique colors and the unique people who lived in them.  They'd be afraid of crotchety old Mr. Helmspot and his walking cane for it's flight through the air at them the times they mistakenly walked on his tulips.  But they'd love Mrs. Helmspot for her chocolate chip cookies and that look in her eyes that they didn't yet understand to be the longing for visits from her own grandchildren.

They'd live in the same old house on the same old block for the entirety of their childhoods, and when they came back during adulthood at Christmas time from all different places in the world with their wives and my grandchildren, their old bedrooms would be exactly as they'd left them.  And they'd have a deep sense that they had come back to the safest and most wonderfully familiar place in the world.  Home.

I realized when we moved to Arizona that I might have to give some of this up.  At first I thought I could create the same type of childhood for my kids here in Phoenix.  I might be homesick, but my kids wouldn't know the difference.  It might be a little hotter and so much for the autumn leaves, but it would feel like spring all the time and maybe we'd have a pool.  Mr. and Mrs. Helmspot would surely be there in some form.  They'd probably be Mr. and Mrs. Gonzales instead, but I'd always wanted to learn Spanish.  So I told the realtor that I wanted a house that represented "who I am."  Preferably an old Victorian with oak floors, painted cupboards in the kitchen, and odd little nooks where I could hide plates of cookies and then listen for the kids to giggle in delight upon finding them.  So we looked for houses in downtown Phoenix.

Unfortunately, most of the Victorians in Phoenix fell down prematurely because they had been built on sandstone foundations.  So right away we started looking for different kinds of old houses.  As we searched we found out that it was just too hot here before the invention of air-conditioning for much to have been built before the 1950s, so all of the early twentieth century houses, the Bungalows, English Tudors, and Spanish Revivals were rare, tiny, and incredibly expensive.

They were also the homes of people that didn't support their neighborhood school.  Instead, these people shipped their children north to nearby, neighboring districts (Phoenix had an open enrollment policy in which you could send your child to any public school you'd like) or they put them into private schools.  I did some research on the neighborhood school and found out that it was one of the best public schools in the city in a variety of ways.  So I asked a lot of the people at the open houses why they didn't send their children to that beautiful brick A++ school with the three story Greek columns out front, that was two blocks away.  I heard quite a list of half conceived, spur of the moment excuses like, "It's a rough school."

"Really?"  I would ask, "How so?"

"It just is," they'd answer.  No one could actually think of anything bad that had ever happened at that school, nor could they think of any justification for such a definite answer.  And no one actually said it was because its student population was 90% Hispanic.

I finally called the school personally and had a long talk with a lovely woman who discussed statistics with me in relation to the school's safety.  It was a safe place.  Now, I'm not stupid.  Of course there would be some problems as my children look like chubby little ghosts with the whitest blond you've ever seen and gray blue eyes.  But in a safe place, these kinds of problems can teach valuable life lessons.  

Suddenly, my dreams of our children walking home from school on sunny afternoons with their friends included the possibly of them learning Spanish in the process.  Even though this excited me, we still couldn't find a house in that neighborhood that we could afford.  There were a few ugly brick ranches from the 1940's that we could barely afford, but nothing else.  And I just couldn't bring myself to feel good about paying that much money for a tiny, sort of old house in a neighborhood that didn't support their neighborhood school.  I began to wonder what something like that might teach my kids.  Oh I agonized over that decision.

The tract houses in the suburbs were a lot less expensive, the population still mixed enough that I kept the hope of them learning Spanish while walking home from school, and most of the people supported their neighborhood schools.  So, we started looking at them.  Later on I would discover all of this to be pointless anyways.  I would find all three of my children in different schools, two of them miles away from my house and requiring bus transportation to get back and forth, and I'd have but a glimmer of hope left that they'd all learn English let alone Spanish.  I would also have accidentally, or miraculously depending on whether or not you believe in miracles, found my family in one of the best school districts for children with autism.  But, I'll get to that later.

Anyways after finally agreeing to to buy a cheap tract house in the burbs, I was a colossal baby about it.

"They all look the same!" I'd complain incessantly, "It's a good thing we don't drink!  Because all these houses are practically identical and if one ever fell into drunken stupor, they could easily mis-judge which house was theirs and end up in bed with some hairy neighbor.  Or his hot wife.  Hmm.  I guess I'm lucky Shane is fully present most of the time these days!  I suppose we can just check the address numbers each and every single time we come home before we go in." 

My patient realtor would form a crinkle right between her eyes and smile politely.  At the next one I would ask her, "Why do they put cheap, white metal windows on dark tan colored houses with no trim?  Nothing else is white on that entire house!  Could those windows possibly stick out any worse?"

She'd form the same crinkle and look up at the house like she'd never thought of that particular detail before.  When we'd go inside I'd continue my tantrum with,

"God these tract houses feel like the insides of hospitals don't they?  Metal and beige and white and blah.  What ever happened to good, old fashioned wood and a little color?  Oh that's right, we're in the burbs.  We don't care about architecture out here."

Bless every square inch of that woman's heart for putting up with me.

I really wanted one of these houses to jump out and grab me.  But in surrendering to buying a tract house, to the sameness, the lack of interesting details, the death of anything unique, and to becoming one of the boring many among the boring many, I'd discovered that none of these houses was going to JUMP or GRAB.  Instead I'd have to search, scour, and want to find something something special, some tiny detail that sung to me and made it mine. 

My love, dearest friend, and beautiful husband, Shane, went with her first to look at houses the afternoon we found our house, and I stayed behind to watch Alden, Isabel, and Cale.  Our children had become too difficult to take looking because they tended to run around and shatter the valued belongings of the people who still lived in these houses.  Alden was five, Isabel three and a half, and Cale was two, yet I was still patiently waiting for them to grow up a little and become normal children.

Shane and the realtor came back rather quickly to tell me that they'd found a house that had the perfect amount of space for us.  Four bedrooms upstairs and one down for the office.  He was actually semi-excited.  As excited as one could get anyways about a tract house.  So I went with her to see it while Shane watched the kids.

I was still trying to get used to Phoenix at the time.  In Billings, most of the streets are on a nice little grid going north, south, east, or west.  They can be trusted.  If you go straight for long enough on one street, nine times out of ten you can reach your destination.  There's one area of town in which the grid shifts angles slightly.  The street dividing the two areas is even called Division Ave., but it still throws people off.  The Phoenix valley hosts a giant grid as well, but only with it's major cross-streets.  The streets in between these cross-streets cannot be trusted for one second to do what you think they're going to do.

Each house in the Phoenix valley suburbs is sided with stucco, painted some shade of desert tan, and given a tile roof.  They go on for miles and miles these roofs, wavy seas of dark, pinkish tile in the middle of the desert.  Occasionally, one might come across an older area where the houses are this odd shade of salmon color, but they still have the same roofs.

Now, I've never been a person who easily loses her sense of direction.  I can find anything in any city any time.  But the monotony of the all the tan stucco occasionally turns even me around.  It's a bit like getting lost in the desert.   You look in one direction and it looks identical to the other, making it awfully easy to lose which direction you're facing.  It would be terrifying if it weren't for the air-conditioned vehicle and giant bottle of mountain spring water. 

You tend to get mesmerized by the sameness of the houses and fail to realize that the street is changing as you're driving.  One street lined with tan stucco houses slowly turns into another street lined with tan stucco houses as you go around a long bend.  The name of the street might actually change several times before you notice.  Once you notice you're on the wrong street, you are tempted to try to go back the way you think you came.  But unfortunately, because of all the tan stucco, you're not really sure if you're going back the way you came.  Suddenly you're saying things like,

"Did we go past that gray truck?"

"I'm not sure.  Did you see that black dog before?"

"Well, that's a poodle and I thought the one I saw was a lab.  That tree looks familiar."

"Honey, that's a Ficus.  Those are on every block."

"OOH!  A red bicycle!  I saw that before, did you?"

"I did.  Great.  Now we know for sure we're going in circles.  Did we get turned around just after the red bicycle or before?"

"Hmm."

This alone can take a long time.  If you are lucky enough to find your desired street again, it might end unexpectedly leaving you to again meander your way back through the complicated maze of tan colored sameness.  After some serious recalculation and finding you're way back to the main cross-street, you might think that the desired street continues somewhere on the other side of the cross-street.  So you plummet through the chaotic cross-street hoping not to get taken out by the pissed off Phoenix drivers who are sick of the fact that's it's been over 105 degrees for three straight months and who really want to just get home.

Once you're on the other side you first have to find a street in which to enter the block, then hope it takes you around a bend to your desired street.  Sometimes it does and sometimes it doesn't.  But if you don't panic and turn around again, you might find your street and start to feel a little more comfortable.  And this, of course, leaves you at risk of once again becoming mesmerized.

Once we finally found the neighborhood we were trying to get to, we drove by a green park, past a sparkling water fall, and through rows of trees and bushes all sprouting red, pink, purple, and yellow flowers.  It was a beautiful day.  We came around a bend and went by a huge gray box school that held it's park, playgrounds, and sports areas right up under it's protective eye on a massive expanse of green lawn.  Children could play basketball, tennis, baseball, or plain old Frisbee right there in the heart of the neighborhood community surrounded by people who actually send their children to that school.  I noticed that it said K-8 on the sign out front.  "That would be nice," I mentioned to the realtor, who seemed slightly taken back that I'd actually said something nice.

We took a left but I didn't notice the name of the street as we pulled onto it because my eyeballs had rolled into the back of my head from all the tan stucco.  As we pulled into the driveway she explained to me that the house was a foreclosure.  We got out of her car looking up at the house and I realized it was the same layout as three others we'd seen before.  But I kept my mouth shut.

I entered my house and saw sunny yellow walls.  Shane was right to have gotten semi-excited.  It was the same basic layout as the others we'd seen but with one additional bedroom and a three car garage.  It was the perfect amount of space with three separate bedrooms all right across the hall from the master bedroom upstairs (a fact I would grow to seriously appreciate in the months to come), and an additional bedroom on the main floor for the office.

As I wandered around I put the fact that it had been foreclosed on together with the traces of children I found, pink paint in one bedroom, a little plastic doll with green pants on, brightly colored beads in the carpet, and came to the conclusion that this house had lost it's family.  Now I had viewed a lot of foreclosures, houses that had lost their families.  And many of these had been stripped down to their bones.  Whole kitchens had been removed where all that was left were missing expanses of tile where kitchen cabinets used to rest.  Bathroom fixtures were missing, carpeting had been rolled up and hauled away, and holes were left lining the sheet rock by people who had taken the copper wiring with them.  But my house had been valued.

It had been cleaned, the kitchen and bathrooms left intact, and the garage door openers and mailbox keys left on the counter with a note explaining how to work them.  The closet doors were all on their sliders, there was not one hole in all of the walls, and the cans of paint lining the shelves in the garage were lovingly labeled with which room each color matched.  "Maddie's room" was on the pink can.  This house had been cared for.  And it's emptiness consumed more than it's physical space.  This alone made me seriously consider purchasing the house.

Later that evening after I'd been trying for fifteen minutes to get my three and a half year old daughter to locate her nose, and she'd finally poked herself in the eye, Shane said to me laughing,

"Wouldn't it be funny to live on a street called Harmony Lane?  It's like a take-off of Elm Street."

Completely ignoring his analogy I sprung to full attention.  "Harmony Lane?  Which house is on Harmony Lane?" I asked looking up at him with wide eyes.

"The one we saw today.  You didn't notice?" he continued.

"No," I replied, "I was mesmerized by the stucco again." 

With a smile growing slowly and brightly on my face I continued with, "The street is called Harmony Lane?  That's sweet isn't it?  I think that might be the tiny detail."

"Huh?  asked Shane.

"Buying a house on Harmony Lane might just make everything all right," I answered.

So we called the realtor, had the offer in by the following morning, and I sighed with heavy relief that the struggle was finally over.  But obviously, it wasn't over.

Not only was buying our house on Harmony Lane not the solution for what was going on in our lives, but the whole experience of it completely foreshadowed the next couple years of my life.  I didn't realize it yet, but "who I am" had been built on a sandstone foundation.  And over the next couple of years I would find myself in the midst of a crisis that would not only break my heart, but would completely destroy the very structure of who I'd always been.

These experiences would hurl every deeply ingrained belief, every dearly held idea, each hope, dream, thought, and conviction, shatter each mid-air in fierce loud explosions, and then slam the leftovers into the ground.  I would find myself frantic and running around, desperately seeking survivors.  I would flip over each dying piece, every detail of who I thought I was, and check them all for vital signs.  Not one would survive.  And I would wake up one day to find that I was left with absolutely nothing that I had ever recognized about myself.

The glorious thing about self-destruction is that a new kind of person can be built out of the debris.  I not only have a different kind of house than I'd always envisioned, but I also have a different kind of family, a different kind of life than I'd always envisioned.  This is the story of my storm, the resulting awakening, and the birth of a whole new kind of life here on Harmony Lane.

Hope of Healing

"nothing in the physical world can contain or limit the power of the human spirit."

Caroline Myss

I batted at the wall just inside the laundry room door begging the light to come on. I had skipped the step of drying my hands because there were no towels anywhere near the kitchen sink. Finally locating the light switch I hit the defiant thing with a fwack. The light came on and I dropped something which sent the rest of the items in my arm load of stuff tumbling onto the floor. "Shit," I thought. Then I shut the door and nurtured the silly hope that somehow the stuff would just put itself away.

Cale had been screaming for forty five minutes. He was angry that I'd gotten him out of the bathtub. Playing in water is his current obsession. He was also hungry, exhausted, and had no words in which to express these things. So he just kept screaming.

My mommy "fix it" instinct was in full riot gear, lashing at me to make him some lunch. The problem was that there were no dishes left with which to cook and no space left on the counter tops to prep food. I don't have many dishes anymore due to Cale's last obsession with the sound of shattering glass. Plus, I skipped doing the dishes last night after dinner.

"One night!" I thought to myself, "I take one night off from dish duty and it renders my kitchen unusable!" There were items of every kind on the counter tops. Piles of papers, markers, art projects, toys, shoes, clothes, hair brushes, and super glue. These are now on the laundry room floor.
Cale's screaming continued as Alden started saying, "Mommy, I'm hungry. Mom! Mom!! MOM!!!"

"What?" I snapped.

"What are we having for lunch?" he asked.

"Hamburgers," I answered.

"But I don't want hamburgers for lunch! I want Mac and cheese," Alden replied.

Isabel interjected with, "I want peanut butter."

Alden continued, "or hot dogs."

Isabel yelled, "I don't want hot dogs!"

Then Alden asked, "Mom? Why can't you just make us each what we want for lunch?!"

I did not answer that question.
I loaded the dishwasher as fast as I could and closed it, tuning my ears toward the comforting "varoom" sound it makes as it starts. Feeling for just a moment like I'd accomplished something vital, I realized that Cale had poured his morning apple juice on the floor. I realized this because I saw an ant. As I looked more closely I saw another, and then another, and to my horror I realized that there were large groups of them on spots all over the floor under the dining table. All it takes is one morning's time of something sweet on the floor to attract ants in Arizona.
As I dealt with the ants Cale's screaming stopped and my ears were filled with something much worse. The quiet splish splash of my son playing in the toilet. And I knew the toilet wasn't clean.

I stood up a bit too quickly and was hit with a wave of nausea and dizziness. Everything went white for just a moment, but I held on to the edge of the table and managed to stay standing. As the colors of the kitchen slowly made their way back into my eyes I was struck with the realization that it was 1:00 in the afternoon and I hadn't gotten a chance to eat anything yet.

I stopped and sat down, forced by my own body. I looked around my at my house in a semi-conscious and tingly state.

There were little pieces of toy car guts and a pile of markers that I knew if I didn't pick up right that second, would end up decorating my bedroom walls later on. There were torn up pieces of paper where someone had mangled one of our book jackets, garments from a pile of clean laundry scattered throughout the crumbs and ants on the kitchen floor, one lone Lego that didn't make it into the bin which is now all the way upstairs, shoes with sand in them, sand, dried swim suits, etc., etc., etc.

Buzz Light-year had been taken apart again and his little screws left hiding in the carpet so that they could later on participate in destroying my vacuum cleaner. Barbie had been stripped naked, put in a unforgiving pose, and abandoned there to show her crotch to every passer by.

The once sunny yellow walls were dented, dirty, and had holes in them from door knobs, hard plastic rolling toys, and temper tantrums penetrating the soft, cheap sheet rock. A long black line of Sharpie ran the horizontal length of the wall above the fireplace.

There were also those blood stains on the one wall. Four months ago Isabel cut her hand and rather then telling me about it, she smeared blood on the walls and doors. I don't know how she cut herself. I wasn't watching and she wasn't able to tell me.

Thousands of times I've ran by and thought, "I really should clean that blood off the walls," only to get distracted by my son diving off the counter top or dropping a dish onto the kitchen floor to listen to it shatter.

My fear of not being able to teach my children how to keep themselves safe or pick up after themselves quickly turned into my fear about my two autistic children never becoming civilized people at all. My skin started to crawl, my eyes started to sting, and my anger started mounting for a full on attack. I could see future visions of twelve year olds in diapers screaming at the top of their lungs because they had to come out of the bathtub, destroying every nice thing I own, playing in the toilet, and throwing piles and piles and piles of garbage all over my once fresh house.

"I had dreams you know?" flew out of my mouth at God, "And this is what it's been reduced to? It wasn't supposed to be like this! I wasn't supposed to be a stay-at-home-mom forever! You could've at least left us in Montana where I have friends and family and HELP! But NOOOO! I have to do it here alone. What the hell's the matter with you? Why did you pick me for this? I've had babies for seven years now, babies that pour their stupid juice on the floor! And now my last one won't grow up?!! Really, is it going to stay this way forever? Well, I quit!! I don't want to do autism!! I suck at it anyways. I can't keep all this together at all. You'll have to find someone else to do this!!"

"Whoa," I said to myself.  There was that part of me that is removed emotionally from my life, whose function it is to simply observe my behavior.  The "whoa" caused me to stop.  I closed my eyes and, breathing deeply, said a quick prayer, "Please help. Remove my anger and help me to see the truth."

Sitting still for a few moments with my eyes still shut, my head quieted slightly. I slowly opened my eyes and true perspective came quietly into focus.

I looked around my house again and saw evidence that I had spent the morning smiling into Isabel's face and teaching her how to produce a lower-case b versus a lower-case d. I had played PAC-man with Alden and we had laughed hard. I had played peek-a-boo with Cale using a straw cowboy hat, a recent gift from a dear friend who let Cale put horse treats up his horse's nostrils and squeal in delight. God what a patient horse you have dear friend.

All morning Cale had smiled and laughed and hugged me tight. I'd given both of my autistic children baths, complete with actually washing them (no small feat). And I had neglected Alden and Isabel to participate completely in both speech and occupational therapy sessions for Cale.

It had been a full morning and my house showed the results of a mother having her priorities in the right place. "That's right!" I remembered, "I'm a flippin' miracle worker!" So I smiled a big, giddy smile while enjoying a great, big, fat bowl of Greek yogurt and honey BEFORE I made everyone else lunch.

I was in denial about the presence of autism in my home for many, many years. I'm going to tell you something about me that I'm sure has always been true, but that I've had to take a deeper look at lately. I am not someone who's always made people feel safe while telling me things I don't want to hear. This may not seem all that profound or abnormal, but I now wish to the core of my being that I had been different.

I'm not saying that peoples' perceptions are always correct or that others are always accurate in pin-pointing exactly what's wrong in a situation. But generally, when someone has a gut feeling that something is wrong then SOMETHING is wrong. And it warrants investigation. Therefore, it's become extremely important to me that people feel they can tell me anything including, "Something is very wrong with your kid. And something is very wrong with you in not dealing with it."

I've recently had several friends tell me that they knew something was wrong with Isabel well before I did. But when I asked why they didn't tell me about it they said it wasn't their place. They also said I seemed to be in denial about it which is actually another way of saying, "I didn't feel safe in telling you such a thing."

My denial pushed Isabel's diagnosis off until she was almost four years old. I did take her to a developmental pediatrician when she was eighteen months old, but that doctor told me that Isabel hadn't started walking because I hadn't been feeding her whole milk (I had been feeding her soy milk on a gut feeling). Other than that, she said that Isabel was normal in every way.

Hearing what I had wanted to hear, I didn't push the issue at all. Instead I took my non-walking eighteen month old home and pretended that everything was okay. I started feeding her whole milk and within a month she did walk, but she also started screaming non-stop and slamming her head into the floor. And she had never been an unhappy baby before that.

Isabel's early years are ones in which she could have and would have received much professional care for her autism had she been properly diagnosed. If a child gets Early Intervention (which is an early childhood division within the Division of Developmental Disabilities) between the ages of 0-3 years in Arizona, then they automatically qualify for ALTCCS later (medicaid which covers therapies and treatments for autism) from 3-18 yrs. old.

But because Isabel didn't get Early Intervention due to an un-informed developmental pediatrician and my own denial, we have had an almost impossible time getting her ALTCCS (medicaid). And as I've said before, our insurance company won't cover anything for autism. American Express self-funds it's insurance and is, therefore, exempt from Steven's Law (the law that requires insurance companies in certain states, including Arizona and Montana, to cover autism). I know I've talked about American Express and it's insurance a thousand times, and I'll probably talk about it a billion more. It's a disgusting and baffling fact, and one that many insurance companies are copying.

So, with no insurance coverage and no medicaid, Isabel has still not received any of the therapies the doctors have said she desperately needs. The doctor's most immediate concern is that she is still malnourished. And since this is medically documented as a condition of her autism, it is not covered by our insurance. So I can't take her to a nutritionist or GI specialist because they won't see you without insurance coverage unless you have cash. And I don't have cash because we've decided as a family to keep making the house payment. I do wish I knew whether or not this is the right decision.

I'm afraid there's no manual for these kinds of decisions. We could loose the house, our credit, and our financial standing, and still only be able to pay for Isabel's needs until the bank took over the house. Then we'd have start paying rent somewhere and, therefore, would no longer have cash to pay for therapies. So we've decided to avoid that road altogether. And who knows what this will mean for Isabel.

When we went back to Montana to visit family, all my family and friends commented on how well Isabel is doing without therapy. Now, if I could just get the professionals to agree we'd be off the hook for trying to pay for therapy and nutrition specialists out of pocket. But unfortunately, the professionals do not agree with my friends and family.

Shane has taken a second job and is working all day and all night until 10:30pm in order to try to catch us up financially in order to pay for Isabel's needs, but we didn't come into parenthood knowing we'd have to pay thousands of dollars out of our own pockets for autism treatment. And we haven't always made the wisest financial decisions. So we have a lot of catching up to do before we can get Isabel the medical care and therapies she needs. And we certainly aren't anywhere near that point yet. I'd get a job except that Cale is going to be getting at least four hours of therapy a day (if we ever get through the authorization process) that I cannot be gone for. It's been made clear to me that the therapists are not babysitters and that my being gone would be unacceptable.

So, our choices remain: Do we destroy ourselves financially for her immediate needs and risk her future care? Or do we try to ensure her future care by making wise financial decisions now and from this point forward? I don't actually know the right answer.

All this could have been avoided by my acceptance of the truth years ago. This, along with my fear of becoming an embittered and angry woman, has forced me to stop and take a look at my denial and other forms of spiritual illness. Why am I so afraid of the truth? Why do I still fight it? Why do I hang on to the hope that the doctors will say, "Oh we've made a terrible mistake regarding your children. They aren't autistic at all. They're going to be fine."

It's because I think I know what it means. And what I think it means is very scary to me. But somehow, what it means is going to have to become okay because it isn't going to go away. I think it might be time for me to tell you my whole story. It's all I really have to offer, and I think it's where my answers might be.

So far, in this blog, I've started to tell my story here and there and then I've gotten scared and stopped. I've teetered on the edges of this and I've gotten stuck on the edges of that. I suppose that's the nature of trying to write through the grieving process. I've given you short stories about childhood moments, friends, churches, church camp, and possibly left you wondering, "What the hell does this have to do with autism?"

I'll tell you this. It has nothing and everything to do with it. Because my story isn't so much about autism as it is about my reaction to it. Autism itself does not cause spiritual illness. But my reaction to it can and has caused spiritual illness in me. What does that illness look like? Denial first and foremost, along with anger, bitterness, frustration, depression, hopelessness, powerlessness, and despair. The purpose of my writing right now is to face and heal these things in myself.

There's already a wealth of information about autism itself. There are countless books and articles that professionals have studied for years and written about. I am not a professional. I am not here to tell you what autism is, which diets are best, which therapies are most effective, or how to do or not do anything. I am only here to tell you my story which of course includes the things that have worked for my kids. Do I hope it helps you? Absolutely. Do I expect it to? No. I can only write this for me.

As I look back at my blog posts so far, I do recognize some of my short stories as red flags. It's only been seven months since my kids were diagnosed with autism. I am still relatively new in dealing with the intensity of this level of responsibility and fear. And sometimes it's more than I can tolerate.

When I have been most terrified, my writing has escaped to times and people that I associate with lack of responsibility, ease, and complete comfort. These are childhood safe spots in which I am able to stay in complete and total avoidance of the present moment. These parts are very interesting to me. I hadn't felt the need to escape to childhood safe spots for many years, and that fact that I've done so lately (and at thirty five years old) has clued me in to just how afraid I actually am. I think that occasional escapes are a must if I am to continue in this process.

Well. I've murdered ants, cleaned up juice a couple more times, and gotten Barbi into some proper clothing. She's now a respectable little doll perched on the shelf with her legs crossed, the kids are down for bed, and I've eaten dinner. I suppose it's time for me to start my story which I'm hoping, from this point forward, to keep on a direct crash course with the answers I need in my relationship to autism. I hope you keep posted.

Grace

We're going home for a couple of weeks. The plan is to leave Friday morning and pull into Billings some time Saturday night. The anticipation of visiting my home town always fills me with a strange combination of excitement and nostalgia. Past moments that are so long gone they seem completely unrelated to my current life almost feel like the memories of someone else as they plop unexpectedly into the middle of today's thoughts like warm fat raindrops.

This is one of those memories.

As I waited for the bus I stared at the church. I couldn’t stop staring. The asphalt was hot under my flip flops and I could feel its heat all the way up to my knees. The summer air seemed to lose itself somewhere over the parking lot, and then find itself again once it reached the green lawn.

Leaves from nearby dripping trees hung over the church’s roof, engulfing it in green. As I stood there forgetting that the rest of the world existed, images of the church’s insides rolled around in my head like it was some sort of giant clothes dryer. I hadn't been inside for a long time. Memories crashed into each other and then separated again with great angst. The passing whiff of a lilac bush brought me back to where I stood, but when I sniffed again all I could smell was my own breath.

 
My old church in Billings, Montana. This is where I occasionally attended church services as a child. Unspoiled and solid, it is a miniature version of a classic Gothic cathedral. The flying buttresses rise into the sky as far as they can reach and then stop, reluctantly, at the end of their stone arms. The place even has a bell. The building is made of sandstone, has peaked stained glass windows, and tall steps up to large wooden doors.

The priest himself used to stand at the door on Sunday mornings in bright white robes that proved the existence of dignity. He would welcome us all in personally which settled my stomach when I was little. He was so tall. I felt like God himself was shaking my hand which made me think hard about where it had been earlier that morning. I could feel the holes in my tights poking out from under my skirt. His kindness in spite of it often made me curious about the nature of “good” and “bad”.

Inside was thick red carpeting that ran up and down every aisle. The carved wooden pews were dark and quiet and the place always smelled of…well…coats. I felt like I was entering silence. This was in direct contrast to the fact that it was noisy with the chattering of other people.

This baby cathedral was like nothing I had ever seen before as a child. I loved architecture, even back then. I would walk in every time with my head back and my mouth hanging wide open. I’d stop and stare at the height of the ceiling like I might ascend directly into heaven. People would bump up against the back of me not realizing at first that a child had stopped in the middle of their path.

I could relate with the peasants of old times who didn’t know how tired and starved for beauty their eyes were until they let them crawl up the inside of a gorgeous and massive cathedral. Every detail was carefully tended to and the sense of control was profound. I was just sure that God must be at the very center of such a tidy place. I felt very small inside of there. This place was vast to me in more than the physical sense. It was beautiful in every way. I could sense structure and discipline but was at a loss as to how to carry that out of the room.

Sometimes the light from the brightly colored windows would sprinkle the people inside. They wouldn’t even realize they had bright yellow and purple dopples of light on their faces. I used to imagine that God was in one of those spots of light, there and bright on some wrinkly face for just a moment and then gone again.

We actually didn’t go to church very often. Every now and then my mom would suddenly declare that we needed to start attending church on Sundays more regularly. So we’d go for a few Sundays in a row. Then the complaining and fighting and dragging us out of the bed early on Sunday mornings would get old and we’d stop going again. Then, after awhile, she would again declare, “We are going to church on Sunday mornings!” and we’d start the process all over again.

I loved what church did for my parents. They smiled and talked to people. It was like they were coming up out of themselves for a bit of air.  One time I saw my dad stick a large check into the basket. He saw me watching him, put his finger to his lips and said, "Shhh.." I knew it was money we probably couldn't afford to part with, but he wanted to give it to them. The experience produced a strange feeling in me. The sensation of having something to give away was filling like a turkey dinner. It eased my heart and at the exact same time caused my mind to flare up
and question him.

My mom always dressed up for church. She’d put on her nylons and her perfume, which she only otherwise wore to work. I used to love to throw myself onto my mom’s lap when she got home from work late at night. I’d stuff my face into her coat and feel the winter air on it which lingered awhile upon entering a warm room. I could smell the scent of her perfume and cigarette smoke. That combination brings me great comfort to this day. At church I’d have a whole hour with her coat, but the scent of her would slowly fade away while the smell of the other people would slowly conquer the room.

Wow. I learned valuable things at this church. Not in Sunday school necessarily, but in interacting with other people. They are lessons that I've carried with me and still apply in my life today.

I remember being babysat one time in the nursery at this church. There I met a girl with bright, smiling green eyes. She was playing with another little girl and when I asked them if they were sisters they said, "yes."

They explained to me that the girl's mother had passed away and that the other one's father had passed away. Their surviving parents had fallen in love and had just gotten married and they, therefore, were step sisters.

This memory flips my stomach over even twenty five years or so later. I didn't believe them. You see, I was a little girl that made up stories. I did it all the time so I just assumed that all other kids did the same sorts of things. And this sounded to me like a story I would make up. I actually told them I didn't believe them.

I found out quickly that they were telling me the truth. Over the years these girls were usually at church and other church activities. They were always gracious to me, even after that. But I could never forget about the day I didn't believe them. My own capacity for carelessness and cruelty shocked and horrified me up. I kept an everlasting distance between myself and them as a result.

I think of this memory sometimes when I'm tempted to make a snap judgment about a person or situation. Recently, when Shane and I were in the JumpStart class at SARRC (Southwest Autism Research and Resource Center) for Cale, there was another parent in the class that I formed an inaccurate judgment about. I thought of the above story and decided I'd better keep my big fat mouth shut about it and try not to create opinions based on my own screwy perceptions.

This parent lived in south Phoenix (popularly referred to as "the ghetto"), came into class late every day, never talked to anyone, wore baggy shorts, torn up black t-shirts, and chains. He looked tough and I immediately made an assumption about what kind of parent he was. I did mention this to Shane one day and he said, "Now sweetie, be nice to him. He's probably the guy you want to know if you ever break down in south Phoenix." We laughed but then continued to keep a bit of a distance from the guy.

For awhile I wondered things about him. I wondered why, for example, he never brought to class the mother of his autistic son. After a few weeks of class, he came in one day and started talking. He interrupted the teacher's lecture and burst open, telling us every detail about what he'd been through with his son during this past year.

His four year old son was feeling sick one day so he took him to the emergency room. Upon arrival at the hospital they discovered that the little boy was in the midst of heart failure (at four years old!!). They immediately flew him and the dad to Denver and performed a heart transplant. The son almost didn't make it. The dad sat there, in class, and described in detail several of his son's very close calls. He had to stay with the son at the hospital for months while he recovered and finally established some stability with the new heart. The wife didn't go because she could not handle it.

Upon arriving home they found out that the son is also autistic. The wife went to bed and cried for two weeks straight (that's what I did) and hadn't been able to bring herself to do anything about the autism. So the dad was, again, the one who was getting the child to the doctors, keeping track of his multiple medications, filling out all the paperwork, getting him multiple therapies, and taking the jump start class. He had that look. The one that autism parents have when the grief pulls down the corners of their eyes. His eyes were light brown.

After class several of us parents talked about what we'd thought of him before he talked and how wrong we'd been about him. Here was a strong, present, and loving father who was doing the best he could against incredible odds. One of the other mothers asked me, "I want to tell him he's a good dad. How can I tell him he's a good dad?" I said, "Well, you just tell him." So when he found us after class she blurted, "I think you're a really good dad." The man smiled and cried at the same time.

As an adult I think back to that church and the experiences I had there. I'll have to visit it when I go home. I'd like to see the inside again and experience the inevitable shrinking effect that takes place when my memories are that of a child, and I'm now much bigger. That church contributed significantly to my survival and to who I've become today. And it's not because of the architecture. It's because of the people. I wonder sometimes if Cale's significant memories will include other people or if they'll all be about the way that water pours onto the cement differently each and every time.

I recently heard someone say that grace, like a pebble hitting the water, has a rippling effect throughout one's entire life. One gracious act leads to another. One memory leads to another. For me it is times like now when I'm in the most fear, the darkest times, that the light shines through my memories, through these life lessons, and guides the way.

To finish the story of my original memory, “Come on Jess, let’s go!” I stuffed the last of my things into the luggage compartment of the giant yellow school bus that was gearing up its tired old insides in anticipation of climbing tall mountains to get us to camp. As we rolled out of the parking lot, the engine noise peaked on its way into the street. I looked out the window at the church. I was thirteen years old.

Bumping along on the bus I thought about the fact that the church had paid for me to go to camp again that year even though we hadn't gone to church very often. They paid for me to go every year even though we didn't go to church very often. Huh. They also gave my family food out of their basement storage room when we couldn't afford groceries. They did it every time we couldn't afford groceries. And they did it even though we didn't go to church very often.

Again

Well, it's time to re-apply AGAIN for ALTC (Arizona Long Term Care - i.e. medicaid) for Isabel. We've managed to pay for a summer program that has included some group speech therapy along with guided social interaction. That and the feeding therapy are all of the therapies she's gotten so far.

She has yet to receive the therapies the doctors have screamed at me to get for her (one on one speech therapy, occupational therapy, and physical therapy). We haven't been able to afford them out of pocket. Shane got a second job at the community college, but he doesn't start teaching until August.

Everyone (Isabel's doctors, Cale's therapists, SARRC, the other autism moms at the support group) has exclaimed, "Isabel has been diagnosed with Autism 299 and has been TURNED DOWN by ALTC?!!"

"Twice," I say as I feel the shame rising into my eyes, "I must've done something wrong."

"Yeah. The questions they ask are geared toward developmental delay NOT autism. You gotta answer them in a particular way. You must have answered them wrong, that's the only way she could've been denied," they ALL say, trying not to directly accuse me of being naive.

One of our therapists explained it to me. She asked me this, "When you ask Isabel to go into the kitchen, does she do it?"

"No," I answered, "but she's physically able to."

"There's your problem," she said, "Don't tell them she's physically able to because then they write down that the answer is YES. With autism we are dealing with cognitive difficulties, the processing of information in a different way."

"We're not dealing with physical ability," she continued, "we're dealing with cognitive ability. But ALTC's questions haven't been updated to include autism yet. They're working on that, but they haven't completed the new set of questions yet. So you have to answer the questions they currently ask in relation to autism."

"But it kind of feels like lying," I finally confessed, the words stumbling out of my mouth unsure of exactly where they'd land. I began to cry as I explained, "I'm not someone who can afford to be dishonest."

"Okay," she said, "Let me put it this way. Let's say there was a fire inside your house and you had your hands full getting your other two children out, so you yelled at Isabel to go outside. Would she do it? Not CAN she, in this VERY life threatening situation, WOULD she?"

"No she wouldn't," I answered, the information clarifying like it had just been scrubbed with steel wool.

"How would you get her out of the house?" she asked.

"I'd have to physically remove her," I answered with tears forcing their way out of my eyes in spite of my best efforts to stop them.

"Then the answer to the kitchen question is NO," she finished.

Why do I struggle so much with this? I guess it's because it shouldn't be a freakin' guessing game to get my child help. Why the hell are they basing their decision on MY answers anyways when they can SEE RIGHT IN FRONT OF THEM exactly what the doctors and psychologists say? Why are MY answers the deciding factor? Shouldn't the the deciding factor depend on the PROFESSIONALS' ANSWERS?

I think it might just be easier for me to slam my head directly into a brick wall then to have to apply for ALTC again. "Why? Why? Why does it have to be so hard?!!" I want to ask. But I'll never be happy as long as I'm asking that question. The productive question to be asked here is, "How?" The past is done. How do I move forward from here? The question of "why" is really a hurdle to be poll vaulted over as fast as possible.

My DDD caseworker has asked me to get a psychological evaluation done by the school district's psychologist. The purpose is simply to add to Isabel's existing data, thereby giving her more of a chance of qualifying for ALTC. The more people who can point out all of my daughter's deficiencies, the better (God, save me from being angry).

The school district is fighting this. They don't want to do a psych. evaluation because Isabel just had one done by the neuro-psychologist and they don't feel they can add anything new. DDD wants one anyway. The school doesn't want to do it.

Just once I'd like to call someone up and ask for something and have them say, "Yes Mrs. Spears, we'd be happy to help." But honestly that doesn't happen very often. And being confrontational and persistent in an appropriate and polite manner isn't my strong suit. That is probably why God has given me so many spectacular opportunities in which to practice.

I'm growing more and more cozy with the feeling expressed by Shirley McClain in Terms of Endearment. "GIVE MY DAUGHTER THE PILL!!!!!" That type of attitude, however, doesn't work that well in the real world. Nor can my nerves tolerate living in that attitude every day (it's EVERY day with my kids).

It does fascinate and devastate me that we live in the twenty first century, that they know in a general way what will help children with autism, but that it's so incredibly difficult to get them that help. And it's amazing that every detail has to be a fight. I've never had to work so hard to see the good and the helpful in people.

The bottom line is that I don't get to fight. My peace of mind cannot withstand it. And the "good" and "helpful" that I see or don't see in other people is completely irrelevant. I've always heard that "peace of mind" has to move from my head (a concept that I understand logically) to my heart (something I know experientially). That sounds sort of sweet doesn't it? But it can actually be an incredibly grueling process.

In order to experience "peace of mind" I have to first know it's opposite right? Otherwise how would I recognize it as "peace of mind?" Well, I'm getting lots of it's opposite these days. Then I have to take actions based on keeping MY peace of mind. I have to feel good about my actions, no matter what. So I HAVE to take good actions, irregardless of the actions (or non-action) of others. Instead of blasting the school psychologist with a psychotic, "I have a right to a psych. evaluation and you'll give me one if it's the last thing you do!!" I get to ask for one politely over and over again, explaining why we need one over and over again if I need to. I don't have to go away, nor will I. I can keep my big fat smiling face right up in their business until they do what needs to be done.

There's nothing I can do to change another person. I can't MAKE them be helpful (or do anything I want them to do). All I can do is my part, which shifts constantly in relationship to the current situation, in a kind and loving but persistent manner. It may piss them off but that isn't my problem. If I've smiled and conducted myself in a kind and polite manner then I can go to sleep tonight knowing I did my part well. And that's all I can do.

Sometimes accepting a situation is about accepting that I do have to do something about it, even and especially if I don't want to do something about it. That "something" however, isn't always what I think it is. First I have to find out what I need to do. Then I need to do it lovingly.

I have not yet found a way to get help from the state. So I'll just keep reapplying over and over and over and over. I'll take up as much of the state's time as I possibly can and I'll never give up. But I'll be polite through the process every time (this is my ideal, which I fall short on a lot).

I have found several things that help in dealing with the school system though.

It's really important to know ALL of the information. I cannot make ANY serious decisions without ALL of the information. I have to know the education laws and what my rights are. Then, as much as possible, I have to become familiar with the usual tricks and games that the schools in my district play. This information only comes from experience and asking lots of questions.

I hate to actually say it's wise to not trust anyone in my school district because that's just not a healthy attitude to take on. So let me put it this way. Never underestimate a person's uncanny ability to avoid work. They're probably overworked. Or maybe they're disorganized. Or they might be busy thinking about their own lives, the health of their children, the next doctor's appointment, how they'll get kid #2 to the soccer game after school, etc., etc., etc. It isn't personal. They're human beings with their own agendas just like me. But keep this in mind and don't get hood-winked with, "Oh that's unnecessary" or "We can do that later."

An example of this happened when we put together Isabel's I.E.P. for kindergarten. We told the "team" repeatedly that we'd need a few days with the final document once it was complete before signing the "final draft" of the I.E.P. document. They said they were waiting for Isabel's previous school to send over her academic goals and that they'd put those in later. We assumed that since we hadn't signed the I.E.P. that we'd be finishing it up and signing it in the fall.

Well, they filed it as a complete and final document (academic goals and special services areas left blank). They informed me this morning when I went in to request the psych. eval. that when we signed the page that said we were at the I.E.P. meeting that THAT WAS SIGNING THE I.E.P. and that their intention was not to meet again. As far as they're concerned, it's complete.

So, now I have to wait until school starts and call another I.E.P. meeting. And do I want to walk into the meeting screaming like Shirley McClain? Yes I do. Will I? No I won't. I can call an I.E.P. meeting every single day if I need to, smiling and lovingly not going away until we have a complete I.E.P. Do I wish they'd advocate for me instead of weaseling out of things? Yes I do. But can I expect them to? Nope.

The one thing I can trust is that God loves my kids more than I do. I know! It doesn't seem possible! But he does. I always hear, "God will not do for us the things we CAN do for ourselves, but he WILL do for us the things we can't." If I'm doing everything I can do for my kids and I miss something crucial, God will take care of it. I know that from experience too.

I've been praying for guides. For therapists that actually know what they're doing with autism. I always end the prayer with, "if it be your will," so I know I'm not just forcing mine. And finally I found an occupational therapist that has years of experience with autistic kids. One of the kids he helped was eighteen years old and was confined to his bedroom because he couldn't stand to wear clothes. It took a lot desensitization (first we touch the sock with our hand, then we touch it with our foot, then we put it over the foot, and so on and so forth), but he finally got him into clothes and he is no longer confined.

He took one look at Cale and I swear the look on his face said, "You little shit."

"YESSSS!!!!" I thought. An attitude of "Oh we don't want to upset him" will never produce results in MY son. We're going to need to upset him. And I finally found someone that'll kick his little butt into gear!! My angels are always there in some form. I just have to spot them through all the human nature out there.

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.