Friday, May 23, 2003

How We Came to El Rancho

One year of writing Chicken Blog has me thinking about our arrival here; how our family came to live at this almost rural, rambling ranch house with turkey vultures overhead, rabbits in the pasture, and cowboy hats on the coat rack. A friend of mine likes to say "life is what happens when you're busy making other plans."

This is the house that Max chose, or at least that is how we tell the story. We hadn't planned to move, to buy a home far from our neighborhood, to make a big change. We had planned to stay at Neptune, in the beach house. We liked the sound of the surf, walking to stores, and the barber shop, and neighbor's homes. We had done so much to make the little bungalow a comfortable home, that leaving was a ridiculous suggestion.

In the Spring of 2001, when Max was 2 and a half, he got sick. The pediatrician diagnosed him as having bronchitis and insisted Max needed antibiotics. We went home with the big bottle of pink stuff and measured it into his favorite fruit smoothie. After one day taking his prescribed medicine, Max stopped talking, and by the second day he only screamed, and hit himself, or others. And when he would look at me, it was a vacant look and totally without recognition. I made him cry, the way a stranger can make a baby cry. He did not know me, or his father, or the boys he had called "the brothers." Sometimes he would start to speak, and as though his memories had been erased, he stammered and paused, and tried to start again, but the words did not come. His face would collapse in an expression of desperation and frustration.

We went back to the pediatrician, and I explained all that we were experiencing. He had been on the medicine for four days; "could he be allergic?" She was certain that he could not be allergic; his symptoms were not consistent with an allergic reaction. Her suggestion or 'diagnosis:' His symptoms were 'the result of being the last baby in the house.' I was 'too indulgent and had babied him. He was simply spoiled' and I 'needed to reform my parenting methods.'

Her dismissive, and uninformed perspective was neither constructive nor fair. She wasn't even our regular pediatrician. She did not know him. She did not know me. She did not know that her head was up her own ass, and that her perspective and comprehension were profoundly compromised by her ignorance and obscured vision; that was my emotional response that I bottled up inside. Meekly, I defended my parenting and explained that the greater likelihood was that Max, as a third son, born during the construction of a kitchen, with 9 people living in a 1200 sq ft house, was slightly more neglected than indulged. He was a bright and active child that related well with his family, and was expected to put up with errands, construction, homeschooling. Making the case that "I literally neglected him" was not my point, but there was really no foundation for her saying that he stopped talking because I caved in to his whims and babied him.

Nothing else in his life had occurred that was new or different except that he was taking pink medicine and it was the first time I ever gave him antibiotics. I did an experienced, intuitive, mom thing and stopped giving him the antibiotic.

We took Max to a psychiatrist. The doctor did not want to diagnose what he saw. He advised us to be cautious about seeking a definitive term to explain what Max was going through. He wanted to take blood samples, and stool, and urine samples, and he evasively, psycho-jargoned his way through a minefield of scenarios and possibilities, and many other things that I frankly stopped listening to. He didn't know what he was doing, but he knew what he could charge our insurance for.

By this time Geoff and I already knew what Max was "going through." Every Google search and diagnostic flow chart pointed to Autism. The symptoms, the timing, everything was classic, even obvious. And we couldn't know how deep in he might be. We couldn't know if he'd speak again, or look at us, or even know us. The reality, especially the unknown of what we were facing, was like being repeatedly punched in the stomach. It knocked the breath out of us again, and again, and again. We cried, almost inconsolably.

Desperation is the mother of action and invention. We were not finding help or support from the traditional channels; the doctors we saw were in denial; we didn't feel we could afford the luxury of denying what we knew, so we invented our own solutions and formulated our own plan for action.

We determined to asses all of our options and to asses all of our needs, with special consideration of Max's needs. This led to the realization that our affection for our house stood in the way of meeting the greater physical needs of our growing family. My cousins, who had lived with us for 6 months while they rebuilt our kitchen, had already moved out, but we were still too crowded. Seven of us, including my grandparents, were living in the three bedroom house. Max had never enjoyed a clear floor to crawl across or a room that didn't already belong to adult activities or big brother toys. We had managed to juggle things and activities and people, but this was not an effective solution. We realized, with some shame, that Max was growing up in a constant state of 'don't touch that,' and 'that's not yours,' and 'be careful there.' I had built a model in my mind of remaining at this house forever, because it was lovely, and could provide stability, and because it was for me a symbol of our success. Now, as dearly as I had held to my old values, I was determined to release anything that impeded our ability to physically and emotionally meet our family's changing needs.

It had already been a full week since Max had stopped talking and four days since his last dose of medicine. Already one nurse, and a good friend, had confirmed that what he was experiencing could be a reaction to the medicine; not to the antibiotic, but to the red dye. Parents of Autistic children learn from experience that many artificial dyes and additives cause severe reactions, and other diet changes often make significant behavioral differences.

Max was less violent, but still not speaking and he was tense, restless and easily frightened, and frustrated. We all lived with fear and anxiety of doing something that would set him on a screaming session or cause him to cry pitifully. His brothers came to us in a joint mission to seek the truth. Compassionately they asked, "Is he going to die?" We said no, and we told them all we could from what we knew and we promised to keep looking for more answers.

In the past, I have found answers to frustrating medical problems through Oriental medicine. Colic, breast cysts, and hives so severe they caused bruising over Alex's entire body; all of these were cured simply and immediately by a practitioner of acupuncture. I took Max to see Dr. Alex, a pediatric acupuncturist. It had only been a week since Max was diagnosed with bronchitis, but all other events had overshadowed his initial illness. Relieving Max of his cough and congestion were Dr. Alex's first concern. He explained that all the issues, the physical and behavioral symptoms, were influenced and affected by the body's attempt to deal with the bronchitis. By relieving the bronchitis we could have a clearer view of his other needs.

Max sat in my lap. It had been 7 days since he recognized or fully trusted me. We still couldn't get a complete sentence out of him, or comfort him when he cried. He sat on my lap and Dr. Alex whispered to him. He held his hands gently in his own and spoke to Max in an equally gentle tone. He had Max's attention, and I will never forget the way Max's body slowly released its tense, agitated posture. Dr. Alex had begun to massage pressure points in Max's feet and around his knees and I felt Max actually relax. Dr. Alex talked about releasing Max's congestion, and he decided to also focus on "balancing his energy." At this point Max turned to face me and he whispered in my ear, "This is a good doctor. I like it here." He spoke. Eloquent and simple, and the dearest words I ever could have hoped for.

Max slept well for the first time in over a week. He was still sensitive, and sometimes irrational, easily upset or unable to express even simple thoughts or needs, but we felt the most hope we had in a week and it was inspiring.

We recommitted to our plan to find a home that provided enough room for Max and for everyone to have safe and adequate space for living and learning and playing. That weekend we went out with a list of possibilities and a map stuck all over with little Post It markers. In Southern California the equation is simple: moving east = more house for less money. So we began to acquaint ourselves with inland North County. For a while visiting big, strange houses was a fun game for the boys, but it did get tiring after several days of house hunting. And not surprisingly, Max was growing especially tired of driving from place to place. He was beginning to mumble angrily, and we recognized that he needed a break.

We were a little turned around and took a left turn, when we should have gone straight, and I turned to Max and promised a cool drink and home soon. But then we saw yet another 'for sale' sign, so we turned down the street and drove slowly passed the long, white ranch style fence that was in front of the house and enclosing a corral. The house looked big, but a little strange, and probably out of our price range and we were tired and ready for a break, so Geoff turned and we were driving away when Max asked, "Horses?" There were four horses in the pasture in front of the house. "Yes, Max, horses," I replied and Geoff kept driving away. Max spoke again, loudly, "What is all that stuff on the ground? Is it kaka?" I looked back at the pasture and sure enough there was plenty of horse "kaka" laying around, but by now Max was asking, insisting, on seeing the kaka.

When your son has stopped talking for a week any request, even driving back to look at horse droppings, has to be honored. Geoff backed up the van, and we stopped for a good look at those horses, and Max's satisfaction was quite gratifying. William and Alex laughed, this was an odd attraction, and we were all very happy to hear Max so clearly express his desire and be interested in something, anything. He repeated his questions about the horses and the horse's kaka, and he pointed solemnly at all the droppings that were scattered over the acre of land. Communication, comprehension, engagement... this felt practically miraculous.

It's hard to be discreet driving one mile per hour in front of someone's home, and then driving as slowly backwards, and then forward again. We were mortified when we realized the home owner was walking down the driveway to meet us (or accuse us?) We apologized, and explained about our little boy really wanting to see her horses. We never would have stopped or looked at the house or considered it, but she insisted we come up for a closer look and a tour of the house and to meet her horses. In time we realized that the unfinished, single story ranch house was our best choice.

This is the house that Max chose, and we smile thankfully when we tell the story. "The Horse House." The horses are long gone. There are chickens and cats here now, and three young boys and two grandparents, and me and my husband. We live in "El Rancho," where we are far from the things we knew, and where we have learned to operate a tractor and live with heat and wildlife. We keep looking for answers and inventing solutions, and we have found a great deal of happiness here. Max says amazing things and is astonishingly perceptive. He is also very easily frustrated and he can be very "frustrating," as he told us when he was almost three years old. He has all the signs of being on the Autism spectrum. It is a strange and confounding path. Our time here, the space the boys have to explore, the serenity of the view and the luxury of being able to move here, all of this has gone a long way to helping us and Max. We have also re-affirmed our resolve to let our love be the guide and strength in caring for our family; I thank God for the blessing of this. There is more to tell, and new stories are forming everyday, but this is the story of how Max found our house, and how we became The Jolly Green Rancheros.

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