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.