Light in the Tempest

Photo Note: this was taken just before a tornado passed over our area

I'm in a red mood today. Kind of bright and hopeful, but with a twinge of angst. That's about the way I begin most days! I should probably fill in a few elements of this ongoing life story, so that you will understand my thoughts a bit better.

My eldest son, whom I will call Michael for the purpose of this blog, is a sweet, silly-spirited, spiritually aware young man - in his heart of hearts, and on a good day. He, of course, is autistic. Still mostly nonverbal at age 16, Michael's "special" needs have gifted us with the biggest challenge we have had to face in this banality we often call our human existence.

Do you ever wonder why they use the word "special" to refer to a personality which is sometimes oppressively difficult, often spirit-raveging? Perhaps "they" want to dupe us into believing that somehow we are blessed to have the opportunity to grow, to learn, and to love in an environment more conducive to self-pity. "They" don't really have a clue. I would like to see them live successfully as a kind, intelligent, and tolerant individual for just one week in my home.

Lest you thought you heard a little negativity and resentment in that last sentence - hmmm - let me think on that one for a second. Yes. You did hear it in there. For 16 years we have often listened to or read bits of well-meaning advice from neighbors, family, friends, and teachers - none of whom rarely have a single accurate concept in terms of what we live and what autism has made of us!

Before I go on, I would like to assure you that there is a positive and redemptive "end" in the midst of this story - and it happens each time I submit my thoughts to my Master and King, the Lord of Lords whom I serve and cherish. And it happens when I quiet my soul and make time for myself - time in which to reflect on the good I also have in my life. But let's face it, some of you may want to know what it's really like to live with autism, so much of this blog will share some insight in that general arena.

Let me take you back several years, and describe the early years of Michael's life. He was a baby who had sleep difficulties, trouble nursing, seeming colic, and little interest in the environment around him. Toys didn't interest him. Only specks on his high chair tray, and opening and closing doors (when he was big enough to do it himself) held his interest - sometimes for long periods of time.

Michael, of course, did not speak at all, other than to make some repetetive sounds, and even those began to fade away, it seemed. His developmental milestones were severely delayed, yet unknowing peers and even doctors and therapists would keep asserting that every child develops at a different pace. This was just before the computer age really found its impetus among a larger market, so we didn't even own one yet. All that I knew was what I lived each day, and I knew that it was not "normal." I often inwardly cried out for "anyone" to help me deal with the increasing behaviors and oddities, but none were there to help, other than family members who came for an occasional, much-needed respite.

I guess you might say the next 10 or so years were spent trying therapy after therapy - everything from auditory integration training, occupational and physical therapy, ABA therapy, hippotherapy, nutritional supplements until they came out our ears, Mega B-vitamin treatments to special prayer ventures in which we ultimately believed Michael could be totally healed if it were God's will (which I still believe He could do). And in there somewhere, in the midst of the exhaustion and rote living, and the daily augmented frustration levels - was the steadfast love of my husband (whom I think I have neglected to mention yet! What a blessing he is!) and the peace of knowing that I am loved by the Creator of the Universe, who sees and knows all my struggles. How wonderful is that knowledge.

To catch you up to the present, I suppose the therapy which has made the most difference, that we've seen so far, has been changing Michael's diet to gluten free and dairy free, commonly referred to as a gfcf diet among its supporters. We had tried it for a period of a year and a half, many years ago - but concurrent with many other therapies, such that it was hard to really tell which proved to be the "effective" treatment. It was grueling and expensive to keep up with, so we simply stopped. What followed was one of the worst years we have ever endured, behavior-wise, and we quickly ascertained that we needed to resume the diet, which we currently follow nearly 95% of the time. My husband is still not convinced, necessarily, that for all the effort it takes, it is even really effective at all.

I don't think I will go into much detail in this posting (which is getting lengthy!) about what a "bad" day looks like, but instead I will just list behaviors which would have been seen. I know - a bit clinical - but just extrapolate a bit, and imagine them spread out over days, weeks, months, and then you'll get an idea of what a bad year would look and feel like. Here are the things we've seen during these tough times, which have encompassed about 12 of Michael's 16 years:

• Screaming. Really loudly. Sometimes for 45 minutes straight. Over something as small as his favorite shirt being in the wash, and he can't wear it right NOW.




• Pinching. Really HARD. And in painful places like under the fleshy part of your arm, while taking a trip in the car, and you can't escape. It happens over and over. To the point of tears.




• Pulling hair. Ours, that is. Not his own. Pulling it HARD. One time he pulled an entire clump out of his sister's hair. She was a trooper and did not hurt him back.




• Biting. Come to think of it, we haven't seen that one in a long time - I had almost forgotten. But it was in the list, too.




• Whining. Endlessly, over the same things he would scream about. Think: 2-year-old tantrum, on Monster Energy Drink, in a big body.




• Hitting. Hard. Whacking, we usually call it. Sometimes (often, come to think of it), without any warning at all - coming up behind us, "whacking" from behind. Sometimes with really hard objects like a beach chair. Think: poor 77 year old Nana at the beach.




• Laughing. OK - you might not think there's a problem with this. How about, for an entire night long, in the middle of the night? We learned about high-phenolic foods, like blueberries, the hard way! Then there are the moments which are purely psychotic in nature, and they are frequent. Laughing, with no purpose, and always at the wrong time.




• Yelling out at the wrong moments: at church, in stores, at school, anywhere, anytime - in which one is expected not to yell out. And well-meaning people coming up to us saying, "Does your son have to yell like that??"




• Trying to talk. And getting so frustrated when he can't make us know what he wants or needs. Imagine that one for a full minute. Right now, if you can. How does it feel? I try to put myself in his shoes...and in these moments, I truly care. We once watched a Richard Dreyfuss movie, Mr. Holland's Opus, in which a deaf and mute older child was in the kitchen trying to make his parents understand him. The scene was such a vivid replica of our daily existence, that my husband and I sobbed throughout the entire scene.




• Wetting the bed. Still, at age 16. Needing assistance in showering completely - so this has been our daily task as well.
  


• Shoving people. Saying "Move!" when he needs more personal space. Think: crowded ball game you're trying to enjoy as a family, just to get out for a change and try to have some semblance of a normal life. Saying "no" to just about anything which doesn't suit his fancy, much as a toddler would, but in the body of a teenager.




• Eating too much. Not chewing. I did have to perform the Heimlich Maneuver on him once, since he was eating grapes whole, and I didn't realize it. He was 7 or 8 at the time, not a toddler. He's still alive so I guess I did a good job with that! If you turn your back, and he likes his supper, he will eat what's on your plate, plus your neighbor's, in a matter of moments! "Where's my food?" you will ask. And he will sign, "sorry!" with a somewhat satisfied look on his face.




• Poking sharp objects at people (especially at their eyes) with no warning, or throwing them across the room. Think: big knives, scissors, and his personal favorite - his fork, at dinnertime. Always with a sly chuckle.




• Cutting himself, even when all scissors are hidden. He usually finds them. He's lost the very tip of a finger way more than once. As a little background on this behavior, one of Michael's favorite pasttimes is snipping paper, napkins, playing cards, or magazines into tiny, tiny pieces, making a pile, and then (fortunately) throwing them all out. That is, when he doesn't eat them.




• Ruining things. Breaking windows, by throwing things randomly into them - not when he's mad, mind you - just to do it. Putting holes in walls, from door slamming (then, he's mad), to throwing things. And digging things like forks into table-tops, leaving a myriad of holes in interesting patterns.

• Loving too fiercely (combine this one with the pinching and grabbing). We had a gerbil once. It died, while receiving Michael's affection in its neck area. We knew there was trouble when he came in from the garage saying "uh-oh," and with blood all over his hand. We had a litter of kittens once, and decided to give them away pretty quickly, after he started playing toss with them. He was simply not able to resist squeezing more and more tightly. Have you seen the movie, or read the book, Of Mice and Men? This is another movie which came a little too close to home. We just hope and pray that scene in the barn would never become our reality. The character had said of his actions in that horrible moment, that he simply could not "stop himself."




• Doing very, very weird things. Think: eating paper bits, with a fork, dipped in ketchup. Lying down for a nap, on a 10 degree day, out in the back seat of our Suburban. We couldn't find him and it was getting dark! There are probably many weirder moments than these, but they escape my memory just now.

Well, this list is just the beginning. Just what comes to mind instantly. I will let you multiply it by a couple times, yourself, and you have the basic idea of the daily trials! Let me end this blog with the promise that I will let you know all of Michael's dear and wonderful qualities, in an upcoming blog! Just so you know how much I truly love him!


Growing in grace,

Not always graceful in growth,

Elise