Finding Pause . . .

The celebrations have passed, the meals enjoyed, the stories shared, the candles blown. Now I must rest.

Sadly, this flurry of birthday joy floats in a wake of much that wears out the heart. I found myself stretching to opacity at times . . . needing to rest and refresh.

Living in a “special” world under the protective cover of a loving Heavenly Father makes it all possible . . . but not perfect.

The latest musical choice topping Matthew’s list: The Polar Express soundtrack blares through the airwaves in a seemingly incessant journey that ends right where it began – a plaintiff plea for “Music!” and that charming grin that sends me over to the remote once again to play the same selection. Why not just hit “repeat” you might ask? I refuse to believe that we lie stranded in a loop. Change will occur. New thoughts and ideas and flavors will enter and rescue us from the monotony that autism feeds upon. And so I find the remote and select it one more time.

The stereo equipment resides behind a barrier and must be remotely accessed – a skill Matthew has failed to fully master – safeguarding us from a non-stop ride over the same notes . . . for today, anyway. A once delightful Christmas cd has now joined the ranks of “UGH! Not again!” Like Disney’s Electrical Light Parade, Tarzan soundtrack, Lion King, and a host of other former favorites, The Polar Express has worn out its welcome for most of us . . . but not all.

Autism for us involves an ever-changing tableau of choices and needs mired in a sea of relentless repetition. We must be flexible as well as enduring, for what works beautifully one day (or many in succession) may not fit the bill the next. No warning, no hint, simply “No!” For a week or two solid Matthew may request a snack of toast each night before bed. The, one night – NOPE! The toast sits alone until tossed out. Foods, routines, sounds, and emotions come and go through an ever-evolving doorway between Matthew and the outside world.

I applaud each newly acquired task, like helping arrange the pillows on his freshly made bed, or mastering the art of tissues in a nose-needy situation, or verbalizing a request for something. Unfortunately I wear thin when the requests become “dittos” and the failure to express a need becomes an issue of frustration (for all involved). Each day dawns bright and new, and yet the glare of the newness falls on weary eyes on more days than I care to share. Today finds me shielding my eyes from the piercing rays of a day full of unknowns in a world of endless choices.

Lest I fall to pity, I find the pause button and give myself some rest. Allowing myself to take a break has not come easy; in fact, the years have shown me to be one who runs smack into the brickwall of breakdown without applying the brakes in time to safeguard myself. My watchful eye keeps my children in sight and I know just when to offer one a bubbly bath, or a tea date away, or a drive through the hills (Matthew’s favorite unwind). Sadly, at times my dear husband and I fail to hear our own hearts beating furiously in overload. Thus, we fall . . . thankfully into the arms of the other.

For if they fall, the one will lift up his fellow:
But woe to him that is alone when he falleth;
For he hath not another to help him up.
Ecclesiastes 4:10

Today I rest in the arms of a very weary husband. A cancelled business trip, a house empty of guests, and a pantry well-stocked afford a day of rest for us.

Long ago my husband discovered that I had no eye for the fuel gauge in our vehicles. On several occasions I “drove home on fumes” and other times I waited by the roadside for his trusty rescue. In short order he adopted a routine for keeping our car fuel above the half-way mark. It worked. (But I still remain blind to the indicator – sigh!) I learned that he had no concept of “sorry we’re broke, don’t buy that.” I took over the financial duties after a few mishaps with lapsed due dates on necessary bills and ballooning debt. It worked. (But he still buys on emotion when the need presses – sigh!) We both had the wisdom to note that these seemingly simple oversights represented an Achilles heel which caused stumbles and bruises that didn’t need to be. Rather than harangue me about the gas level, he merely blessed me with a wing of protection. Rather than gripe about a late fee, I merely wrote the checks in a timely fashion. It works. We smile. Life continues along its bumpy path, “Business as usual” until . . .

Every now and again we blow a fuse and the reset button must be applied. Today we will push reset.

Our daily teatime at midmorning will linger a bit longer as more stories than usual fill the air. Laughter will come stiffly at first and then grow deep and full as the tight lines around the mouth relax. A second piece of cake or another cookie will sneak onto the plate. (With a plethora of leftover goodies to choose from and a bit of extra pause, who can resist?) I will even lie back and close my eyes, despite the soiled dishes stacked neatly nearly 24 hours ago. I will pause . . .

All too soon the tummies will growl for more than tea and cakes, the laundry chute will belch an overflow of play togs, and Matthew will come in with an eager request for “Music?” Yep, I’ll climb aboard the Polar Express AGAIN . . . but I’ll smile a refreshed smile as I dial in #164, thanking the Lord for this precious “Special” life that includes a “Reset” button that trumps the “Repeat” button every time.

Happy 21st Birthday Matthew!

How did you go from this . . .

. . . to THIS in such a short time?

I love you sweet boy man.

Favored Status

Jacob says, “That broken hip?
An angel did me a favor.”

From The Inward Journey by Gene Edwards
In reference to Genesis 32:24-32

I stand in the midst of a “favor” sent by God. Tears course down my face as I strive to count it all joy. God promises victory, not ease; comfort, not leisure; hope, not remedy.

Living with autism has aggravated my ‘broken hip.’ Trials, tears, and toil seek to silence the music of celebration, to dim the eyes to beauty, to break the heart’s cistern of peace.

No button to push, no potion to heal . . . only prayer and supplication and endurance through this darkness.

Weeping may endure for a night,
But joy cometh in the morning.
Psalm 30:5b

And so I wrap myself in His mantle of love and ride out the storm. Though the waves crash and the thunder booms and darkness fills the air, I KNOW THE GOD OF ALL and He knows me. He knows what I endure and why . . . though I do not. He knows why and what my son endures . . . though I do not. My heart breaks for my sweet man-boy as he battles unknown, unexpressed enemies. But still I praise God because . . . I know we are not alone.

I know I am not alone for beyond the Omnipotent Embrace I sit next to loved ones right here in the boat with me, equally burdened, equally devoted in love and prayer. In addition, hands and hearts around the family, around the town, and around the globe join me in prayer and peaceful thoughts upon reading this (I know you do, and I thank you SO MUCH). Some of you know the pain of living with autism, some of you cannot imagine it, and all the rest of you fall somewhere in between. But God hears the prayers of each one of us, regardless of our experience.

If you have stepped across my little cyber threshold for the very first time I apologize for the lack of gaiety you may have been seeking. If you take a look around you’ll find that I celebrate this wonderful life (with all its ups and downs) with a joy firmly rooted in the love of my God-father-son-comforter, but just now the comforter dabs away tears, as He is wont to do on such occasions.

As I write this and drain away another pot of tea I hear the strains of Winnie-the-Pooh tunes filling the garden breeze as the girls have grabbed paintbrushes and made their way out of doors in an effort to finish painting the interior of Briar Rose Cottage (our playhouse/potting shed/tea house/reading spot) before the threatening clouds splash a few raindrops our way (or maybe snow according to some weather-tellers).

The happy tunes of friendship and love bring a smile to my face and an eagerness to run out and join them at play . . . uh . . . work wells up inside. As coats of primer prepare for coats of “Come Hither” (isn’t that a wonderful name for the petal-soft pink paint I found?), dreams slip out of summertime berrying with a respite for refreshment in the cottage or maybe a catnap on the wicker settee or simply a quiet haven for delving into the poetry of Wordsworth or a novel from way-back-when. The possibilities seem endless as each dab of paint brightens the place.

Smiles and dreams, hope and love – the thunderclouds melt in the presence of such.

Earlier this morning Rachel greeted me with a fistful of buttercups freshly gathered from the dewy meadow grasses. Those cheery flowers forced a smile and pierced the veil of sadness allowing sunlight to stream through.

Joy came in the morning . . .

Just like He promised.

Mystery Solved

Hosted by Cecily and MamaGeek

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My sleuth side delights in the merest of mysteries:

How did the bird escape from his cage and why is he encircling Rachel’s head? (Admittedly, not one of my tougher cases.)

Or maybe this one:

Who failed to eat their zucchini and why is it wrapped in the cloth napkin now tossed casually in the trash? (Note: this one could have been committed by the eldest or the youngest in residence . . . hmmmmmm . . . a bit tougher to solve.)

At any rate, I love a good mystery book, film, or real-life adventure that twists and turns with cleverness and intrigue. (Spare me the gore or filth found rampant amongst most “Best” selling printed or filmed offerings – I can’t bear them!) So it has greatly interested me to sleuth out the latest mystery around our house:

THE GREAT STEREOPHONIC START-UP CAPER

It all started many years ago when our tiny twin #2 rolled over to the stereo cabinet, reached from his cerebral-palsy-free side, and changed the music selection. I stopped in my tracks and turned slowly to see my “blind” child perusing the shining button selections and sporting a wide grin as he selected again. Ah yes! That was a GREAT and serendipitous case. The solving of said mystery led my dear husband to construct a smoked-Plexiglas enclosure that ensured the integrity of mom-only music selections. (We had yet to offer full democracy to our children regarding music choice. At this point we owned all of five cds and the cd-changer held five – voila! Let’s not wear out the mechanisms switching to and fro for sport. But I digress . . .)

Throughout the years Matthew’s abilities grew right along with his healthy little body and he proved a venerable foe in the child-proofing wars of our home. The “potty-lok” so eagerly scooped up in those days by mommies and daddies to safeguard their little ones from a disastrous potty experience, afforded the parents the opportunity to do the “potty dance” OFTEN. Mr. Matthew, however, merely disengaged the mechanism and emptied the “clean” potty contents (whew! Rather than PHEW!) onto the floor, as yet another science experiment in his ever-growing repertoire entitled: Confound the Experts and Prove Yourself Smart Despite Labels to the Contrary. Into that same category I must add the socket-plug caper, wherein I painstakingly crawled around our 1500 square foot condo and sought out each code-required socket and amply plugged it against curious little fingers. As I collapsed on the living room floor and sighed a huge cleansing sigh of “relief,” little scientist Matthew crawled over and offered up fistfuls of the plugs and another of his winning smiles that queried, “Did I get an A on this test, too?”

Throughout the years I learned to merely ignore the ignorant musings of doctors who failed to assess Matthew’s strengths and focused solely on his weaknesses. I continued safeguarding our family home and health from Dr. Matthew, “Special” Scientist.

“Any memorable experiments gone awry?” you may ask. Well, how about the time we awoke to a most dastardly foul aroma one Saturday morn. I did not run outside searching for decomposing wildlife, but rather found Matthew immediately, catching him red-handed with a fistful of dry kitty food in collusion with the whirring hot-air popper engaged in spewing ghastly heat-treated friskies all over my kitchen – who knew it could smell so bad?

“The scariest experiment?” you wonder. That would have to be the one with the pink “blankie" in the entry hall, a dead-bolted steel front door located in the middle of a condo complex threaded with serene ponds, and a missing baby sister. That one still makes my heart pound with fear. But, the tears of the little boy crouched in the corner of the hall supplied an ample confession to his first crime and I swooped outside to rescue the thoroughly-delighted Miss Elizabeth on a lark among the flowers.

We realized right quick that “special” would mean something other than “slow” or “unable.” A dear friend in Santa Cruz said it best when she called my boys “differently-abled.” She “got it” where so many “experts” have failed.

So, today I add another caper to Matthew's impressive resume: The Great Stereophonic Start-up Caper. The latest thief-proof Plexiglas cover (the model has evolved over the years to suit the ever-evolving craft of Mr. M) has been breached as evidenced by the stereophonic serenade that greets us each day as we ascend the stairs. In the beginning we solved the mystery pretty quickly due to the array of Plexiglass and metal supports littering the family room. But later the evidence did not support any kind of removal, so Gary booby-trapped the protection. Yep, booby trap sprung as long arms reached in and dialed away. Hence, more structural support and a return of the booby trap. Lately, the stereo plays just as regularly, yet the tell-tale trap holds firm. “Did we forget to turn it off last night?” we wondered. “Did Matthew remove and reassemble the trap?”

Days went by and the stumping continued. (Should I admit it bugged me to be outwitted again by a young man who sits placidly behind a gentle smile, in his favorite chair, gently rocking to Disney’s Tarzan soundtrack saying nothing while we scoured the room for clues?) Finally, I threw up my hands in defeat and said, “Maybe he learned to work the remote?” My husband turned with a dismissive look (of which I read beneath the surface, “I can barely figure out that thing"). I promptly walked over, picked up the remote, shut off the music, and watched Matthew bolt upright in his chair. Then I casually handed him the remote and he instantly turned on the music and went back to smiling.


“WOO HOO!” I whooped, “You did it! You’re so smart!” Matthew grinned broadly, chuckled a bit, and got up to join me in the happy dance of joy that involved hugs, hopping, high-fives, and a tear or two. Another mystery solved . . .

. . . AND CELEBRATED!


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I dedicate this post to MICAH over at The Rocking Pony. You keep it up, precious boy! ; )

Choosing to LIVE with Autism

I heard the door slam. I heard the spit fly. I heard the scream. My blood pressure spiked. My heart sank. You may think I merely relate an episode of typical sibling rivalry found in just about every household around the world. (Well, then again, I’m not really sure if a Mongolian family living in a yurt on the desert dedicated to raising camels experiences this same kind of thing – but I’ll err on the side of inclusion and say, “I’ll bet they have their days too.”) No, I refer to something a little bit beyond the pale. Here at Wisteria Cottage we live with autism. I emphasize the words “LIVE WITH.” It frames our life, adding particular constraint, but we live our lives just the same as all the rest of the families who juggle siblings, chores, schooling, vacations, illnesses, and so on. Each day presents new opportunities to spread our wings, soar in the face of danger, smile at our progress, and land into bed at night with the satisfied exhaustion of knowing we gave it our all.

But what about “those” days? How about the time one daughter had her wisdom teeth out, another nursed the final stages of a cold, a third battled homesickness in a dorm 600 miles away, mom stumbled with exhaustion, dad staved off a compelling need for napping … oh did I mention it was 100 degrees and stifling as they all remained sequestered indoors trying to maintain sanity and meals and entertainment and education and THE CALM ENVIRONMENT THAT AN AUTISTIC SON PREFERS? [Now return to the opening lines of this post and read it again through that lens.]

I love choices. Every day I have many choices as I face the life God has selected for me. Some days I glide through with confidence and poise. Other days I resemble a PMS-infested, alligator-seeking wrestler. I want to speak to God and I want to do it right now! “Hey!” I bellow, “I didn’t read the fine print all the way to the bottom! I certainly didn’t sign on for THIS MUCH challenge! I can’t do it all!” Then I fall into a puddle of pity. Dramatic? Sure. True? Absolutely. I fall down in failure so often I’m amazed I have any knee cartilage left.

Now, I don’t need to add that most days follow a relatively regular course without so much collapse and hysteria, but I should point out that my son has autism EVERY DAY OF HIS LIFE. Always had, always will. You don’t outgrow it. You don’t cure it. You don’t even understand it. But you do endure it. You live with it. You manage it. You love him as deeply as all the rest of your kids, even though you have to work twice as hard to make a fraction of the progress. I’m not imagining some hypothetical life of attention to special needs – I LIVE IT!

Last night when I tuned in (on my laptop) to hear just what “Sarah” had to say and why I should think about supporting her, she spoke directly to me in words that I could have spoken myself:

Our family has the same ups and downs as any other ... the same challenges and the same joys. Sometimes even the greatest joys bring challenge. And children with special needs inspire a special love.

Now, I do not intend for this post or my blog to endorse or support any candidate (remember my header “Whatever is lovely …” – definitely NOT politics), but I do wish to include her words because they echo what I hear every day all around the blogs, in my local market, at my public library: We may be different/challenged but we live and love just like the “normal” families.

On a fellow blog I commented:

“I have always been amazed at the notion that if "I" couldn't imagine doing it then it must be wrong. How silly is that logic? I couldn't imagine just about every invention man has come up with (or even the few that my husband has blazed the trail in discovering and profiting from greatly), so are these great men and women wrong or bad or stupid for carrying out their course?

Often when people discovered I had a severely disabled son they pitied or sainted me on the spot. When they discovered I had TWO handicapped sons I floated before their very eyes. When my three daughters showed up eyes narrowed. When they learned I homeschooled they flipped. "I can't imagine how you do it ...” "Don't you know what causes this?" and other unsavory remarks quickly morphed into "YOU'RE CRAZY!" Hmmmm ... "they" couldn't imagine doing what I do EVERY DAY without complaint so "I" must be crazy? Hmmmm ... strange logic that DOESN'T CHANGE MY LIFE ONE BIT.”

Later I cruised over to see Karen at The Rocking Pony and read her wail of frustration over Micah’s fears and unmet needs in his new school situation. Her questions regarding a change, a boost, a pull, or a surrender echoed through the halls of my life. I have walked that pathway, but not in her shoes. I’ve been given my own set of clogs to wear and a calling that rambles over some pretty scary cobbled streets and rutted roads. Road map? Where can I get one? Assurance that I will always choose correctly? Sorry, fresh out. My only comfort comes in firmly believing that God created Matthew to be just exactly what he is: smart, attractive, loving, tall, ravenously hungry ALL THE TIME, difficult to reach, eager to be loved, willing to try so hard, unable to succeed in every activity … and so the list goes. My son: Just like every other human being on this earth, unless you insert the label “autistic.” Then all sorts of images, ideas, and prejudgments bubble up and froth all over his unique beauty.

Prior to May 26, 2004 we also lived with cerebral palsy and a host of other “afflictions” that rendered Matthew’s twin, Andrew, incapable of caring for himself. Though incredibly bright, our dear son couldn’t speak with a voice (he had to settle for eyes) or eat from a spoon (tube, please), but he had hopes and dreams and frustrations and joys just like every other person rattling around in this cottage. How did we manage then with such a “burden”? Simple, our whole family pitched in and lived fully with those challenges. When I watched little Piper Palin smooth down baby Trig's hair with a wad of spit artfully applied to her palm, I let out a “Hoot!” Politics went right out the window as I watched that precious little tyke loving her little brother. She knew he needed some hair care and being “special” didn’t have anything to do with it. She stepped up to the challenge and smoothed away. Every single member of our family learned to supply a special talent or timely action in the miracle of living a daily life of love and beauty and splendor without having all the “right” pieces to play with.

The blogdom, the neighborhood, the family -- places I go to be myself. I’ve never isolated myself or my family from the world. Do I fear rejection? Judgment? Ridicule? Sorrow? OF COURSE, but having a disability floating around in our midst has no bearing on that whatsoever. Life hurts. Life shines. Reality involves boo-boos and bumps of all sorts, but if you stop and look you’ll notice the beauty of a rose, the poetry of a butterfly in flight, or the refreshment found in the dance of a weeping willow happening in the same moment as the painful jab. Trust me. You can choose which to grab onto for support. Personally I’ve always found the upside of clinging onto the garment of a great-big God and focusing on the “lovely” parts of life.

When Andrew and Matthew burst forth into the world of wires, tubes, monitors, and fears, Gary and I stopped in our tracks. Stunned! I can still recall Gary’s firm, unwavering voice when he asked the doctor bluntly, “What’s the next step? What can we do?” We never wondered, “Why us?” (Though many asked.) We never gave up and handed the reins to someone else. (Though many suggested it.) We did reach out to any and all that offered help. We enjoyed prayers, meals, babysitters, comforting shoulders, and so much more. We met some of the dearest, dearest people simply because we had a need and they had a need to give. Funny, some of those “angels” embed into your life and remain life-long friends; others complete the task and then vanish quickly (likely, moved along down the road to help another).

My greatest heartbreak cannot be found in the loss of dreams for my son, or the heavy burden of care, or even the sorrow of prematurely burying a child. The greatest sorrow lies in the stones and slurs cast my way from those who could not imagine walking in my shoes. The terse comment against my judgment, the veiled gasp at my course of action, the sneering taunt that my child contributes less somehow because he navigates a different trail – these things BREAK MY HEART.

We choose to live with autism, but we did not choose autism – it chose us. When God spun the delicate web of my son’s unique life He included a thread foreign to most, but intrinsic to Matthew’s blueprint. Andrew’s myriad difficulties facilitated different treatment but didn’t render him “different.” Each child that landed in my womb and proceeded to my arms contained something “special.” Once a very dear and well-meaning friend noted that “it takes a lot more love for those special ones.” I smiled at her lovingly and let her know that nothing could be further from the truth. Love cannot be measured that way; I don’t dole it out like discipline based on transgression or failure. Instead, it is enough to simply love without reserve or fear or shame or compensation. I love my boys. I love my girls. I love to love.

So, back to the rising temper, the threatened tantrum, the frustrated outburst – yeah, it happens. Yeah, he goes to his room to cool off (and I go to mine as well, sometimes). Yeah, it can be VERY embarrassing if this happens in the public eye. Yeah, I love him despite it all. You see, we have chosen to LIVE with autism in residence. It’s a bummer sometimes, but when my son comes to me, spreads out his big ol’ arms and gives me a two-armed hug and a kiss, I know no amount of spit or screaming could ever outweigh the love I feel for this man-boy and every other person in my life that loves me and lives right along side me in this messy, topsy-turvy world.

Many of you blogger buddies have crept into my heart and burrowed in right alongside the ones I call family. Thank you for your greetings and prayers and shared moments. I like to think if C. S. Lewis lived today I would be blogging with him and he would encourage me with the following truth: “We blog to know we are not alone.” As I travel over the miles of cyber space I find so many that slake my loneliness, share my travails, and make me laugh. We reach out in words and pics to know that we are not alone. To quote another amazing “friend”: “It’s a beautiful day in the neighborhood.” Thanks Fred Rogers -- creator of that first cyber neighborhood -- you nailed it.

Matthew