Clothed in White

Photo Note: The innocence of youth - pictured here in my four children, dressed in their "dress-whites" - gives me pause when I start to grumble about my lot in life. I am truly blessed by these children who both cause and inspire me to persevere in my faith to the end, so that I too may be clothed in white, unashamed of the life of service I have maintained toward those I love.




This marks the end of my thematically colored blogs, and I will simply ask you to imagine this seventh blog to be written in white (on a dark background, of course!). It serves as the summation and perfection of all the other colors, combined. In future postings I will revert to a simpler method of thematic organization... :o)

White. I am almost hesitant to begin, as the awe-infused nature of this full spectrum "color" is one which causes me to stop in my tracks, and wonder if I am worthy of its analysis. Of course the auspicious symbolism which accompanies all things white is inarguable, and its meanings are replete with life and healing.

Purity, cleanliness, truth, Divinity, knowledge, illumination, and sanctifcation all come to mind instantly as apt descriptors of this color. Our sins are washed away by our Savior's blood, and we are as white as snow. Our Redeemer comes, in majestic splendor, on a white horse in the book of Revelation. We are all familiar with these Biblical themes which ignite in us a reverence for our Maker, in whose awesome love we have been called "worthy" of receiving such lavish grace. But there is yet another side to the acquisition of this state of sanctified wholeness.

Consider that, as Scripture teaches, those who persevere to the end will be clothed in white. We like to think about the clothing, the robe we will don, but we don't like to focus our thoughts quite so studiously on the first half of the verse. Perseverance. And the previous words "those who" link the need for action, on our part, to the promise we shall inherit through faithfulness. To a less spiritually relevant extent, I find that it is perseverance to which I am called in my daily battle with autism, as well.

So what does this mean in the practical application of living and loving our cherished autistic friends and family? I am thinking of my colorful analogies as I reflect on this, and am reminded that loving someone who is often difficult to love is not a choice of varying reactions or techniques I can employ, but a choice to love - no matter what. A simple, conscious decision to extend favor, whether merited or not, in good situations as well as bad.

Perseverance, ironically, is a term used within the world of autism (and pronounced differently when used as such) for behaviors of which the autistic person is often either unaware, or unable to cease doing - behaviors which are repetetive in nature, and comforting to him or her. Michael has many such "perseverative" behaviors, and these can try one's patience to the outer limits of sanity on occasion. Many of them fall under the category of attention seeking behaviors. Let me describe just a few, here:

• Poking at someone's eyes when they're dozing off - to see if they're really sleeping



• Slamming doors repeatedly - or just opening and closing them, if we're lucky



• Needing to pull something when it is fluffy. Think: cat's tails. We have two of them in our house. Tails, that is.



• Needing to grab the phone from us when we answer it, or make a call - just long enough to say "hi," find out who is speaking on the other end, and then say, "bye." This can be quite awkward when you get a call from a doctor, teacher, salesperson, pesticide-sprayer-guy (yes, that's what he's called around here, anyway!) or anyone else who does not intimately know my son!



• Needing to rip or shred things. I think I have touched on this one before, and it's definitely a lot better these days. But we've had a lot of documents, report cards, bills, and other mail "gone missing" over the years, and presumably having ended up in the trash in a pile of small clippings.



• Eating every time anyone eats anything. Now this is truly a problem sometimes. I might have just finished feeding the family supper 30 minutes ago, but if I happen to fix something separate for myself after the fact, Michael will want some too. Of course he uses a separate, clean plate for each "course..."



• Having lights on - all night long. We went through a season of about 6 months in which Michael was so fixated on his room being well-lit, that he would "freak out" if we tried to turn off his light at bedtime. If we were lucky enough to remain awake after he had fallen asleep, we would often sneak into his room to turn off his light, but he would invariably "catch" us and would wake up screaming and yelling for quite a while about the "awful" thing we were imposing on him.



• Getting you to look at him. Unlike a typical child who simply grimaces with kid-glee, in random intervals, "Looook, Mom/Dad!!" - Michael will simply pull your head or face toward him, sometimes with no warning! And once is never enough. We respond each time, "Yes, Michael" to whatever it is he is requesting of us or commenting on. These range from indicating that he thinks we should shop for more french fries, to commenting that so-and-so is going to come visit soon. He will do it repeatedly, to the point that you want to shout at him one final "YESSSSSS, MICHAEL!!!!!" in the hopes that he will finally stop turning your head toward him.



• Needing a "yes" answer to most if not all questions or comments, instead of a "no" response - which enfuriates him! Believe me, this is not giving in. And this has absolutely no bearing on the way most people should act when a child demands something (ie, don't give in!). If you lived just two weeks in my house you would do exactly the same thing as I! However, I have learned to be slightly deceptive in my "yesses..." by not finishing the sentence sometimes, so that technically it could be interpreted as a "no" or a "maybe" as a result.



• Putting things where they belong. This is cute to a point. But it gets interesting when you're trying to leave something in a "new" position - you should see the battle which ensues from that one! Rearranging your living room takes on new meaning when Michael is present to witness it. It turns the whole family into a bunch of "sneaks!" We all try to do things quickly or when Michael is not around, just to keep the peace!



• This list could actually go on for about 7 more blogs' worth. But I will spare you having to persevere to the end of my thoughts on this topic. :o)

In the final analysis, I find that I am unworthy of "white." I am so glad that the Rider who is called Faithful and True has already spiritually clothed me in white, as I have trusted in Him. And so I trudge on through one perseverative behavior after another - in the hopes that by persevering in faithfulness through them all, I may earn the right to be clothed in white in that great and final hour, and for eternity!

Looking toward my white garment,

Elise

Colors Exploding

Photo Note: Not my typical "brown outfit," but this is me - and my sweet daughter, whom I will refer to as Chrissy in this blog. She has learned by default and necessity to do many things which even adults have found difficult to do, the greatest of which has been her beautifully forgiving heart toward her brother.

Brown is such a dull color. What's amusing is that I wear it all the time! I have brown pants, brown patterned shirts, and brown "shells" - all to layer over each other in a stunning array of earthiness! I even prefer browns of varying shades for eyeshadow, layering them for a "natural" look - why on earth do I like this color??

One thing which comes to mind fits in with some thoughts I was having last night during the last portion of a Pilates/Yoga class at my fitness club. Brown is safe. It is not frightening. It is not usually bold or "out there" in any way. It blends in with its environment, and is not common for it to cause attention, or stand out from the crowd. Brown just - IS.

The first time I took a yoga class, many weeks ago and more toward the beginning of my current weight-loss journey, I remember it having a strange and wonderful effect on me during the quietest and most relaxing moments. It was as if all the tension of life, wound up inside of me, finally had a place to deposit itself. (Yet I wasn't exactly sure where it went!)

In the emotionally tumultuous moments we have often traversed, there usually seems to be conflict, self-confrontation, and a feeling of straining toward personal control - anything which allows me to feel like things are on the right track, and manageable. A perfectionist personality strives to attain full "correctness" of situations and relationships, and often it feels like there is total failure in the absence of such correctness. And the soul remains tightly wound on a daily basis, seeking for reprieve.

So in those moments when I am lucky enough to have time for reflection, as in my yoga class, I typically try to reassure myself that I in fact am in control of things, and "on course." On that particular evening, though, something snapped in that wonderfully deceiving scenario, and I knew profoundly in that moment that I was not in control - I never had been, and never would be. I remember that knowledge as feeling both awful and terrifically liberating all in one sweeping moment, and I felt a tear or two slide down my cheek.

Everything in the world of autism as I know it is about control. The autistic person wants control, and needs it in order to be "right" in his world. Yet he is not truly self-controlled because he cannot relinquish that power to allow others to assert theirs, in his presence, in a give-and-take fashion. Rather, he lives wholly self-centered in the knowledge that his needs are paramount in every situation and moment.

This sameness which he needs, this peace and order, is part of the psychology of autism in which the afflicted person (and I am saying there is affliction, in spite of the way in which our second group from a previous blog - those who don't see the need to change autism at all - would interpret things) manipulates both the things and people around him, in order to bring all things into alignment in his own world. At least that's the way I interpret it. How I would love to ask my son if this is his perception of the reasons for his behaviors.

In a typical Bible-based response, there is no room for such manipulation of a child toward others, nor of such willful self-assertion, if it negates the needs of others or damages either relationships or things. Such behavior would normally be corrected, modified, re-directed, or at very least discouraged by a parent, in particular. Herein lies the obvious response of well-meaning onlookers who chide the parents of autistic or otherwise challenged children with statements such as, "if he were my child I would do such-and-such..." or "well, he just needs more discipline (training, privileges taken away)..." or "less attention (reward for bad behavior, coddling)..."

There is the therapeutic response in which a firm and experienced ABA (Applied Behavior Analysis) therapist tells you that you need to do things the same way each and every time, that your response must not vary, and that all your other children must come on board, too, and practice the same response to be used no matter what the circumstances. Never over-react, always speak firmly, kindly, and without agitation, almost without personal intonation. Never give in to wants, or certainly not to tantrums (haven't we heard that before - even with typical kids?!) Never acknowledge the improper behaviors, but only affirm the positive.

That sounds good in theory. Really, it does. The ABA therapists, though, do not have to stay at my home all day, and through the night, and deal with any manner of psychotic oddities and other naturally occurring family distractions which provide a nauseating array of constant flux and change in my world. They can go home, get a cappuccino en route, and push "reset" to come back and do some more "therapy" tomorrow. I'm a huge fan of ABA therapy, in case that wasn't obvious through this discourse, used in a myriad of situations, with kind and caring professionals doing the work. But just don't expect me to become a therapist myself, on top of all the other "hats" I wear. Yet my children often find this role a bit easier to take on, and come by it somewhat naturally.

You should see my 9-year-old angel of a daughter when Michael has just whacked her in the head or pulled a clump of her hair, hesitate in reacting at all, only to return the "kindness" moments later with a beautiful and gripping love response at the tiniest thing Michael does "right" afterward. "Good job, Michael! Nice job following directions!" she will say with a sing-song therapeutic voice, patting him on the forearm with approval. And the true miracle in it all is that she truly means it. Somewhere in the innocence of her pure, young soul she is more fully capable of seeing the "right" response, as she is more freshly borne of the heart of God, as yet unjaded by the vast and deep sorrows of life.

So my thoughts as I lay stretched out in relief (that I had survived another contortionist feat by showing up to that yoga class at all!) turned to a question, "Why is it that I have such an aversion to confrontation?" And I realized in a moment of full clarity that it was because I have fought to find, get, and enjoy control in those areas of my life in which there is none, and have failed repeatedly to encounter it. It eludes me as surely as every nerve in my body coils up with questioning struggle, seeking release, and does not ever fully un-kink itself.

Confrontation. Something from which I shirk in cowardice. There is the saying, "let go - let God." And from it, too, I retreat with shame. But I find a glimpse of the peace which could be mine when I fully "let God" be in control - and it is hard to accept, knowing that when I get up from my meditation, and the soothing music is gone, the confrontation, the fight, and the strained living are there all over again. But in the age-old dichotomy of a "fight or flight" response, I find direction and hope. Perhaps they are both faces of the same coin, and we really don't need to choose one over the other.

If I decide not to flee from the fight, nor enter into it in a way which will destroy my own peace, but rather find ways to express and even live out the fight emotionally, and physically (boxing, anyone?!) - then I can perhaps diminish the tendency to remain trapped in the battle daily. Through writing, music, exercise, diet, prayer - and anything which brings well-being to my thoughts while at the same time providing them a creative and exhaustive outlet - I can push through the daily "fight." And in doing so, I transport myself to a higher perspective, perhaps approaching the mind of God in each transcendent moment. And maybe it won't feel like such a fight anymore. I can live "outside" the battle since I have faithfully struggled, as did Jacob with the angel, and come to know myself in the process.

So brown, to me, has been a comforting retreat from the struggle. But perhaps it is just a bit too "safe" and allows me to flee to a simpler life of sameness and emotional stagnation. Time for some chartreuse, magenta, royal blue, or lime green! Time to step out of the comfort zone, and find some true release! It's ok to lose a little control, as if painting with wild abandon, and in doing so, find true control - in victorious peace!

Colors exploding,

Peace imploding,

Elise

Weird and Wonderful Purple

Photo Note: This is a peaceful place found in the summers of my hope - with a little bit of purple, to refresh the spirit...

Let's face it. I've been wanting to use "purple" as my theme color for awhile now! I bet you're thinking I'm going to start right in on the topic of royalty and the privilege of being a child of the King of Kings. Not so fast. Really, the only thing I was thinking of when purple came to mind was wacky, weird, and wonderful!

Be honest. Don't you think the color purple is one which makes you sit up and really know you're alive? I recently wore a luminously vivid silk purple shirt to school, and a student commented cheerfully and with obvious approval, "I think that's the brightest shade of purple I've ever seen!" This particular student had worn a purple shirt himself on a dress-up "away game" day, and so I instantly recognized him to be "friend"and not "foe."

Wacky, weird, and wonderful. Yes, that about sums up Michael. On a day which is singed and not burnt by autism's flame, I can look all feats and failures squarely head-on, and know that my son is purple, and that it's OK to be purple. Insert thought: I must go find and re-read the book, Harold and the Purple Crayon to see if there is a special message just for me in its classic pages...

Michael is purple. Michael does purple things. I see screaming shades of purple when he does them. I feel uncontrollably purple when he does them. I become overwhelmed with purple angst when I live them. And I see purple, all shades, in others more clearly. I do not scorn the woman whose child is screaming his head off in the grocery store. I don't join in with unfeeling and chiding conversation about critiqued parents who "need to get hold of their child" or "set some limits!" After all, there is the chance that these children - are purple, too.

There are different streams of thought within the autism community, and anyone who purports to know about or care for such individuals must certainly know of the dichotomy. Of course as in all things there are varying degrees of opinions, as numerous as the talk-show hosts and guests who placate audiences with tireless discussions of all sides. But as one who lives and breathes with autism, I see two sides to this inequality, where A is not equal to B, and B is not equal to A. I perhaps belong to a third group, somewhere in the middle and struggling to see if the most lucid path veers to the left or right.

One group of people seems bent on healing, fixing, supplementing, bypassing, denying, justifying, excusing, correcting, fleeing, or ignoring autism. They are all really the same in their intent: Autism is not normal. And so we must fix it - or give up. There are nutritional deficiencies and metabolic imbalances which must be corrected. There is brain chemistry which must be optimized. There is toxic overload which must be purged and cleansed from the hypersensitive immunology of the child. There is sensory touch which is lacking due to autistic aversions to tactile stimuli. There are social skills fully undeveloped, and in need of one-on-one prompting. And there is behavior - lots of it - which must be managed through repetetive and structured training. This has been just a minute portion of the exhausting ritual we've endured in the past 16 years.

With this first group, there are the ever-increasing "miracles" one always hears about. One therapy "cures" autism, another allows a child to speak for the first time, and a third treatment spurs books to be written, and lectures given, all in an effort to arrive at a color less "weird" than purple. Articles are clipped, website links forwarded, and talk shows recorded and perused for "answers." Support groups are formed, guest speakers are commodities to be had, and conferences abound, world-wide. Doctors come alongside, modulating their preconceptions, and implementing constantly new treatments and tests. And all are trying to fix the dreaded autism before it is too late and has ravaged the world, one parent at a time.

The second group is one to which I give the highest praise and affirmation, and yet as an outsider to it, cannot fully understand. This is the growing network of high-functioning, expressive, insightful adults who have either at one time, or currently, been labeled "autistic." I came across members from this group somewhat by accident a few years ago, as I entered a chat in which the merits of certain treatments and autism therapies were being debated.

I vividly remember being referred from that page to a beautifully written website, whose pages I was not yet ready to unveil in my own heart, and whose truths pierced me such that I could not read them for very long. It was written by a mature and sensitive autistic adult, and gave a glimpse into his daily struggle for acceptance in a loveless and critical world. As I found it both stimulating and intimidating, I also found it depressing, imagining such a life continuing on, and on - for my son. I never did bookmark that website, and took the easier path of never searching for it again.

In its pages the voice of one who could just as easily be that of my very own son, should he ever be able to fully communicate his thoughts, drew shades of purple which I had never before witnessed. They told of a world I couldn't fully see or relate to, and of the reasons behind the autistic - and, in his mind, necessary - behaviors which I could merely experience as unwelcome, and base. And in these musings, written by a scholarly and insightful autistic writer, there was anger and bewilderment at the relentless quest of others outside of their community - to "fix" or "heal" autism. He was intent on espousing the relative normalcy of his "illness" - preferring to think of it not as an illness, at all. He argued simply that his behavior, wants, needs, and oddities were "his" normal. And with that, he had gracefully learned to cope.

Those who responded on this message board concurred with its host, eloquently asserting that their value as human beings was masterful and complete as they were now, with no need of change or repair. They were all offended by the world at large, being a group misunderstood, and undervalued, every step of the way as they had matured and successfully entered the communities in which they lived. Most held jobs, many had advanced degrees, all - were purple, and discussed it openly. Why wouldn't the world just let them be that wonderful creation?

So where is my position in light of these two competing attitudes? Of course I would want to hope if I could choose complete "healing" or recovery. Of course I would want to believe, because in the absence of believing there is doubt and fear. And each new "thing" that comes around the block is fodder for despair, as none of them are "our miracle" - but rather that of someone else's child. Each time we stand up, and lift our heads high with victorious expectation, we are humbled again by the stark reality of sameness, and of tireless continuance.

And so I am left as if by default with a third responsive choice, and that is the quickly deadening hope which engulfs and causes me to shiver. It has indelibly left its stain in my psyche, and I feel that I am changed forever, never to emerge fully victorious, fully free. Yet we stand because we must, or we have at very least developed the habit of standing. It may seem a stalwart demeanor to some, a reticence to move forward or to seek healing of heart at least in my own life, but the very act of standing firm has caused the blood of living hope to pool in my awkward and uncertain limbs, and I am somehow made fragile through the process.

What should be my apt response? Destroy, fix, or ignore what is purple? Or as the second group testifies, should we instead accept and live with autism without trying to change it - simply wondering why everyone else is seeing us as so purple? Or, as a reaction to which I seem to have fallen prey, do we allow the purple to fade, as a much-worn garment whose lustre and life yearn to be reborn, and yet are cast aside as to a second-hand clothes shop? When you put it that way, the choice seems ridiculous. Acceptance is the pride and splendor of the second group, the autistic individuals themselves. And if they accept their purple plight, why shouldn't we?

I lament that I cannot seem to grasp that idyllic perspective. It is just outside of my clumsy reach. I find instead that the fading garment is daily tossed aside, and then reclaimed with dignity and hesitant anticipation when I look into the heart of God, with a deeper love. Can I dare to hope that I may edge closer to a truly Divine love for my son? I believe that I have found a life journey and calling in acquiring such a depth of acceptance, and it is one for which there will be no human or material approbation or reward. But I am filled with hope.

Purple! Wow. Weird.

Wonderful.

Painting with purpose,

Elise

Am I Alive?

Photo Note: The cemetery in which our first daughter, Allison, is buried, and the beautiful tree, which God makes live.

I hope that my choice of green today is sufficiently readable for my 80-year-old mother, who asked me to make my font choice "dark enough to read!" (Like it, Mom?) I love symbolism of various types, and colors are just one ideal expression in which I find wonderful, rich nuances of reality.

Green grows. Green breathes. Green beautifies. And green lives. As a Christian, I am mindful daily of my life in Christ, and the way in which God's faithful presence lifts me "from the depths" and sets my feet on high places. But there is a deadening step which encumbers the unsuspecting moment or hour through which I pass, and it is truly frightful. Am I really alive? Or am I merely appeased with a mirage of what I believe exists, and which I will never attain?

I remember my early days as a new believer in Christ, and the simple joy which flourished in a heart which barely knew pain. Praise and worship deeply rooted in my personality then, I would often walk around my college campus singing at all times and in all places - from inside the elevators (interesting acoustics in there!) to my own private "stage" in a large function room, late at night. When you still have most of your life ahead of you, vast and near limitless in its scope, it is quite easy to pray and praise with an unyielding hope.

King Solomon's words ring true, that there is "nothing new under the sun." Such an odd sentence, I always thought, but I find comfort in its quality of linking me to God-fearing men and women who lived many hundreds of years ago. All of us have experienced times of trial and testing, whether with autism, or another challenge - and we find the measure of who we are through the manner in which we traverse them. If we are not fully alive, is the fault that of life itself, or of our dulled version of it? Is our life played out meagerly by rogue, amateur stage hands or by maleable, nascent artists coached by Life Himself? How much greater would be our brilliance if we would but fruitfully yield to the God whose life beats palpably in an through us?

This hapless jumble of meanderings has taken me a week to posit, without much apparent fruit from my efforts! But there is one thing that is gradually clarified, as cobwebs are brushed away from the mental tumult. That is the need, in this process of finding this "real" life we all seek, to come to know again the "The way, The truth, and The life" who is Messiah. The Lord, Jesus of Nazareth, Y'shua haMeschiach. So lying in repose in this dark, lifeless moment, lacking in beauty and laden with repression of soul and strength, I confess I am now caught. It's time to seek the Lord again, and find my life anew, buried and risen with His.

I am alive!

Elise

Infectious Giggles

Orange is a good color to use when describing Michael - and I did promise that this next blog would focus on some of the positive attributes we have been blessed to enjoy over the years! Orange is one of those colors that you usually either love or hate. But not necessarily at the same time, and your opinion may change from time to time. It is sometimes garish, unsightly, shocking or just plain weird. Other times, if you get just the right "hue" or situation in which to use this indescribable color, you find that it is unique, cool, spunky - fun! You've got to love orange. Sometimes. And most days, that's about how we feel about Michael's personality and his autism.

Here he is, waiting for his bus to arrive one school morning. Michael loves school. He says, "bus" repeatedly when he's not at school, checking with us often to make sure he gets to go back the next day! I don't think there's any routine he likes quite so much, with the possible exception of mealtimes! He's friendly to peers and teachers, loves to "high-five," hug, and interact with others, often commenting about them with single words combined to make a thought. He uses these short and sweet sentence creations intermittently, and although outsiders sometimes don't understand his words, we can usually make out what he's saying.

Once when we were expecting a visit from his uncle soon, he would say his name, and then "here. soon. swim." He was looking forward to the visit and to swimming in our pool with his uncle. Michael loves all visitors, family friends, everyone he sees in stores, all his teachers, and all animals - except those which race toward him or jump on him suddenly.

So here are enumerated just a few sweet things about Michael which endear him to us (thankfully!) so that we can endure the "rest!"

• The sweet, infectious giggles. Not the psychotic ones - just the little boyish ones, which he emits from time to time when he is very happy.





• The way he will sometimes imitate animals he loves, and almost seem to become them. It's cute for a while, anyway.






• The lists. And he sure loves to make them when we're headed to the grocery store! Sometimes he will list things out for us to write down, with sign language or a semblance of the spoken word itself. Other times, he will use a supermarket advertisement, and mark items he wants us to buy!






• The neatness. Oh yes, autistic children are generally concerned about all things orderly. I will often catch him putting something away which I had long since forgotten about, with the long list of my daily tasks - and he always puts it just where it belongs.






• Doing something nice for you when you least expect it. Once recently, I really needed my reading glasses and was so comfy under my afghan, upstairs, that I didn't want to get up to go find them! I called down for one of my "normal" children to bring them to me, and a few moments later, up came Michael, glasses in hand, and saying "yeah!"






• The gentleness, when he is not being wild, or attacking you. OK, that sounds funny. You know from my previous post that all is not rosy in Michael-world. But in between some of the trying times, with the awful behaviors, there is a simply untainted, pristine and pure side of Michael which is somehow akin to the Divine. He plants upon you a gentle kiss, ever-so-softly, and you think it was the kiss of a butterfly landing gently on you in splendor. He pats you on your forearm (even if only moments after ravaging it with his sharp nails, and signing "sorry...") and says repeatedly, "Nice!" until you almost believe him, and you agree. He comes over to you unexpectedly one day, and begins to gently scratch and rub your back in the nurturing way a parent would, to a child, while praying beside him on his bed.





• His soft, soft skin - which is rivaled only by a newborn baby's skin. How does it stay so soft? It's a little bit like his spirit. Even though it may most likely be anguished daily by its lack of communion with a speaking world, it somehow possesses an inexplicable presence which can only be understood as Divine.





• The sweet, infectious giggles. Did I mention them? How could I not? They, in fact, keep us on the path of victorious love for our son.

Patient in Hope,

Elise

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

Here I am

Blue is a nice color. I think I will begin this journey with blue. It's peaceful, and the ocean is blue, after all. So it couldn't be all bad; don't you agree? In fact, I wouldn't mind being at the ocean right now, on a warm July day, at the haven I call my family's summer cottage. Instead I sit draped under my wool jacket, in a heat-deprived living room, with so many thoughts to share. Well, here I am.

I have never blogged before, and more precisely, I'm not even quite sure just what a blog is! I know it usually consists of thoughts spilled aimlessly or not-so-aimlessly onto a page, for all the world to peruse. I suppose it's easier than writing a book! So please join with me on this journey as I share a little with you about myself and my life. And since I'm a little weary tonight, I will be brief for this first posting.

I do love to talk! But the first thing you should know about me, is that it is hard for me to physically talk, sometimes! I was blessed to inherit a family stuttering gift, much to my chagrin, and it intermittently plagues me, as a form of speech hesitation. When I am particularly stressed, or tired, it is a bit worse - and on those days I wish all the world would stop talking! So this is really an ideal format for me, since my fingers have absolutely no trouble in chatting! I have had a wonderful email friend, my sister-in-law, for many years now - and she is indispensible to me. I have enjoyed this email relationship so much, that I thought perhaps I might enjoy a larger "audience..."

So - hello, friends! Oh, I said I would be brief, didn't I? OK. Here goes, cut-and-paste style, to speed things up a bit...

• I grew up in a loving, normal (is there such a thing?) home



• I went to college, and yes, I graduated (ha)



• I play several instruments, and am fluent in Spanish, which I've taught for a total of 6 years, with a very long break in between - to raise a family!



• I'm a committed Christian
  


• I love my husband - very, very much! (there's a cool story there - for another time!)



• My kids are great. Usually. LOL



• My first child died, after 9 months, and it was a very tough time in our lives



• My second child is autistic. And he's usually the reason we live and love and laugh and cry and groan and sing and work and fall down, as we do, in this home.

Autism.


And what it has done to us, as human beings, as believers, as members of society, as a family.


And so my blog begins.