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.