We’re living in a house where there’s no heat in the littlest bedroom. And since Cale has to have his own bedroom, while the rest of us have to share bedrooms, he’s the one who gets the littlest bedroom. So every night, just before I go to bed, I unlock and open Cale’s bedroom door. I peek in, making sure that he’s sound asleep. Then I leave the door open so as to let some heat into his room. He hasn’t tried to escape from the house during the middle of the night yet, but he has escaped a few times during the day. It’s incredible how good at it he is. Once he puts his mind to it, it takes him roughly seven seconds (about half the amount of time it takes for me to pee) to find a way out of the house and get himself into the street. And we live on a corner now, where people seem to drive by really fast.
We let most of the neighbors know about Cale’s Autism last summer (when we were here for six weeks) after the first time he got out (the time when one of the neighbors almost hit him with her car). We let them know that he has the gross motor skills of any five year old, yet seems to still have the brains of an infant. After that we put a lock up high on the front door, but he’s still managed to escape a few times after one of my other kids had forgotten to lock the high lock.
Cale’s been studying the high lock on the front door lately. It hasn’t occurred to him yet that all he has to do is push a chair over, but it will soon. And he knows full well how to unlock the back door, it just hadn’t occurred to him to do so until about three days ago. Now I find him in the back yard all the time, which is fenced now thanks to my husband. But we’re still planning to put a high lock on the back door.
In a nut shell, I just don’t sleep very well knowing that Cale’s bedroom door is unlocked at night. Instead, I wait. And every night, sometime around 2am, I hear him. It sets off my mommy emergency alarm every time. I shoot into a sitting position. It never ceases to amaze me how I can be floating peacefully around Flathead Lake one second, yet be in my bedroom, upright and listening with my entire body, the very next.
He usually wanders around for a minute or two, checking each room in house for fairies (I wish! Actually he just follows some kind of Cale created pattern). Then he patters his sweet little feet into my bedroom and gets into bed with me to warm up.
I quite love this actually, because the only time he ever holds still is when he’s asleep. Well, that’s not entirely true. He’ll sit in one particular chair in our living room and rock back and forth listening to music for hours, but I don’t get to snuggle him during that time (not without a lot of screaming anyway). The only time I ever get in the really good snuggles is when he’s chilly and sleeping.
One night, he was wearing the fuzzy, pale blue pajamas that my aunt had gotten him for Christmas. He’d had a bath earlier and still faintly smelled of lotion and toothpaste, so he was particularly snuggle-able. Within just a few seconds he had completely taken over my pillow, but I didn’t mind because he was so damn cute I could hardly stand it. Then he fell asleep.
I was right in the middle of savoring a long, warm, snuggly snuggle, when it suddenly, and quite dramatically, occurred to me that I had never prayed for Cale. That’s not entirely true actually, because I thank God for Cale all the time. But I had never tried to illicit any kind of cure for his Autism before, and I got thinking hard about why that might be.
I’ll tell you why I think it is. I’ve been taught that Autism isn’t a disease in the traditional sense - that it’s a disorder of sorts instead. And a disorder, by definition, has no cure. I’ve been told to accept that my son’s Autism may simply be “who he is.” Therefore, praying for a cure seemed rather dangerous. What if the only “cure” for “who he is” would be for him to get hit by a fast moving truck? That’s why I hadn’t prayed for a cure.
I must admit that I’ve gone back and forth with the disease thing though, because I also cannot imagine that God would create a little person who seems miserable more often than not, and then simply call it “who the little person is.” It must be a disease, even if only in the spiritual sense of the word (defined as “dis – ease”). I also know that a person can have Autism and not be miserable all the time. I’ve seen it in my daughter. Sure she experiences problems, but she experiences a lot of joy as well. My son, however, just seems so miserable so much of the time.
I decided to pray.
My prayer went something like this: “God - I pray for your will for Cale. But I’d really like to see you cure anything that’s wrong with him that can be cured, if it be your will. And I promise that I’ll always love him no matter what.”
The next day, I had a lovely day with my husband. It was a fluke of splendid nature that my kids had to go back to school the Monday after Christmas break, even though it was a national holiday and my husband had the day off. A day with my husband WITHOUT my kids! I love Montana. Nothing like that glorious day EVER happened in Arizona, EVER.
We spent the morning wandering around downtown. We ate breakfast in a quiet restaurant, got a screaming deal on used refrigerator, and then went to Lowes to buy supplies for our big “finishing the basement” project (which will include running a heating duct up into Cale’s bedroom). After we got our errands done, we went to Barnes and Noble to look at home magazines and drink coffee during our last hour of freedom.
I really didn’t mean to walk by the Autism section because, like I said, it was my last hour of freedom. My intention was to use the bathroom as quickly as possible and then spend the rest of the hour sifting carelessly through home design magazines. However, a book caught my eye. It was The Natural Medicine Guide to Autism.
I opened it up and read, “This book is here to tell parents of Autistic children that you don’t have to accept that there is nothing you can do for your children beyond remedial intervention to help them live more easily with their limitations. You also don’t have to accept that pharmaceutical drugs are your only “treatment” options.”
That old knot sprung right up out of my stomach. I wanted to put the book down in favor of a nice architectural history of the Craftsman Bungalow, but I didn’t. I flipped to another page and read on, “if I interfered with what she was doing by picking her up, she would just stiffen and scream… At three years old Angela was still totally non-verbal.” (Big deal – my son’s almost six and still totally non-verbal).
“After hearing about allergies that affect the brain, Donna took Angela, who by then had been diagnosed with Autism, to a doctor who specialized in neurological allergies. “Now, one year later, Angela is a different child, as if she was never that bad and all the heartache was a collective nightmare for our family.””
Yup. And this, “Victoria wasn’t seeking help for her daughter’s autism, however – because she didn’t think help existed. Nothing had worked and now her daughter was a picture of “failure to thrive.”
“Victoria took her daughter, Hayley, to a clinical nutritionist (a Ph.D. level one by the way), and, after beginning an individualized nutrition program, “What was astonishing was that Hayley’s autistic symptoms began to disappear…. Her twin sister, who was not receiving treatment, remained the same as before.””
If you’re not an autism parent, you might now be thinking, “Sounds like great news! Did you buy the book?” But if you’re an Autism parent whose child, at almost six years old, is still communicating exclusively by screaming and hurting people instead of talking, one whose never gotten any REAL answers for your child, are you now feeling what I was feeling at that moment?
Let me try to put into words how these kinds of stories tend to make me feel… imagine Shirley McClain emerging suddenly from the depths of my skin, leaking profusely out of every one of my pores, and screaming torturously at the top of her lungs, right there in the middle of Barnes and Noble, “GIVE MY DAUGHTER THE PIIIIIIILLLLLL!!!!!!!” And this is putting how it makes me feel mildly.
I have taken my son to every kind of conventional medical professional that you can possibly imagine (pediatricians, developmental pediatricians - we were once on a waiting list for almost a year to get into, rumor had it, the best developmental pediatrician in Phoenix, but they called the week before our appointment and let me know they’d reorganized and that we wouldn’t be getting in – psychologists, psychiatrists, Autism institutes, cardiologists, allergy specialists, ear nose and throat doctors, G.I.’s, and nutritionists.
They’ve all managed to diagnose the Autism, and nothing else. Well, that’s not entirely true. The allergy doctor informed me that Cale’s allergic to dogs. But, seeing as how we don’t have a dog, I really don’t see how this is pertinent information. And the psychiatrist watched Cale for ten whole minutes before putting him on a heavy duty anti-psychotic, which we’ve had to up and up and up to the point in which he has now almost reached an adult sized dose, yet that has, once again, stopped working.
So my question is - if the kind of help this book describes can be given by doctors, then why haven’t any of our doctors given us, or at the very least directed us towards, such help? Why have they been so content to not give a shit? GIVE MY SON THE PIIIIIIIIILLLLLL!!!!
I was in the middle of Barnes and Noble, with people all around me, walking back to Shane with this stupid book and that old disastrous rage all flared up in me again, holding my eyes wide open so as not to let the tears escape, when they managed to leak out anyway and roll down my face right in front of everybody. “Oh look! There’s a crazy lady crying in the middle of Barnes and Noble.”
I got to the table that Shane was sitting at and set the book down on it. He looked at it for a second and then looked right back at the magazine he was reading, not because he doesn’t care but because he, too, has already seen a hundred varieties of the same damn thing. It was our last hour of freedom, and he was smart enough not to bother wasting his time.
I bought the book anyway of course. And, later that afternoon, found myself wandering through the health food store, scratching my head at all the stuff that’s available, and finally deciding to give Cale four times the vitamin B6 than is recommended by the FDA, along with a magnesium supplement, because my new book says this combination is the only way to see B6’s actual potential.
The problem I encountered immediately upon returning home was this - how do you get that much vitamin B6 into a kid who can’t stand grainy textures or strong flavors, when they don’t have B6 in liquid form? I mixed the powder in the capsules with a ton of sugar water to sweeten it, but Cale still vomited before getting it down. And it all caught up to me, all at once – all the things that we’ve tried and the fact that Cale’s no better off as a result of any of it. I began to cry.
Of course, life always has a funny way of easing my mind at the moment I need it to, if I let it. Just then, Isabel handed me a book from her school library and insisted that I read it to her. I stopped and read her the story. It was called, A Bad Case of Stripes.
In the story, the main character is a little girl who is a people pleaser. She gives up the one thing she loves the most (lima beans) so that everyone else will like her (because everyone else thinks lima beans are gross). After this she catches a disease in which she literally becomes a physical manifestation of who others are or what they want to see.
She starts out with stripes on her skin, but when the kids at school call out, “stars,” the stripes turn into stars, “spots,” they turn into spots, etc. When the doctors try to help her with medication, she becomes a giant pill. When the herbalists try to help her, she becomes a giant plant. And when a new age hippy tells her to relax and become one with her room, she does. Literally. The pictures on the wall become her eyes, the bed her mouth, etc. Finally, a little old lady comes to her house and gives her some lima beans. She eats them, once again becoming okay with who she is in spite of what others might think, and is cured of her “dis-ease.”
I don’t know if it’s just that this particular story showed up at just the right moment, or what. I’m mean, I’m an educated woman. Should I really be getting profound insight from children’s stories? But I had reached a level of desperation, once again, that left me open to anything. I took it seriously. As a result, that little story settled me right down. And, when I think back on it, I think this might have been my very first step out of the box.
Just for clarity’s sake, there are two pieces of insight that I got out of that story. The first was that my son had become who other’s (including myself) had made him. Autistic. Non-verbal. Problematic. Etc. And I realized that my son will always be, for me, whatever I see him as. So I decided to quite thinking that I know what, or who, that is. What’s important, first and foremost, is that he’s as healthy and happy as possible, so that who he really is (whoever that might be) can shine.
This freed me from all sorts of fixed ideas about what I think my children with Autism need, and led me to this prayer, “God, help me to forget everything I think I know about my kids, so that I can have an open mind for a new experience.” Yeah, I stole the basic tenants of this prayer from somewhere, but I can’t remember where so I can’t give proper credit at this time.
The second bit of insight I got out of that story made me giggle at myself. Reading three pages out of some book and then rushing to the health food store in search one thing that’s a cure for Autism, sort of reminds me of that commercial in which the guy gets on the scale to weigh himself, gets off the scale and runs around the track one time, and then gets back on the scale and hits it (surely it’s broken!) because he hadn’t lost any weight by running around the track one time. I love that commercial.
I realized that, in addition to setting aside what I think I know, it’s probably going to take some real time and some real research and some real effort to get new insight into my son. I realized that I can’t do it alone, yet that everyone I turn to for help is going have different kinds of answers, none of which I can afford reject outright even if I get conflicting advice.
I can’t believe everything AND I can’t NOT believe everything. None of it’s true and all of it’s true, if that makes any sense. In fact, I’ve come to think that the whole concept of truth might be a bit of a limitation in and of itself. I don’t have to worry about whether or not something is “true.” All I have to know is that if I've prayed for God's will, and something is right there in front of me, it’s right there in front of me for some sort of reason. It may be there to help me examine different possibilities, or it may simply be there to lead me to the next thing. So I just keep praying for healing (if it be God's will), keep doing the footwork with as open a mind as possible, and keep trusting that God is putting the next right thing in front of me.
The results have been truly fascinating so far, so much so that if nothing but the journey itself comes out of it, it will have been totally worth it. I’ll have to tell you all about it in my next blogpost though, because today is Saturday and my kids are all looking at me like, “What are we doing together today mom?” It’s time for me to go and put up a tent in the back yard and teach my kids how to pretend camp. Maybe we’ll sleep in tent in the backyard tonight, even though it’s still pretty cold outside. I bet I would get some really good snuggles in then!
