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Archive for the ‘special needs’ Category

If you ever doubt that nonverbal, seemingly “severely autistic” people don’t know what’s going on around them, I’d like to offer this for your consideration:

We saw a particular doctor, a neurosurgeon, several months ago to evaluate Nik’s “mildly tethered” spinal cord. During the appointment, Nik was very focused on the doctor’s stethoscope since he is enamored of all things medical. While Nik played, we discussed his symptoms with the doctor and plotted next steps including ruling out some things. We have not seen this doctor again (yet) since the initial visit.

Lately, Nik’s been having an upsurge of similar symptoms including intractable head pains. He’s also started using his device to ask to see this particular doctor. I, stupidly, assumed he was just randomly naming one of his many doctors.

Until this morning.

I asked Nik, after he had said this doctor’s name a few times, “What do you want the doctor to do?” Nik started answering with his self-scripted litany of the processes involved in taking vitals, etc. We see enough doctors that Nik not only knows the routine but has incorporated it into his play routines. It’s only recently that we realized he only engages in this routine when he feels “off” or needs to soothe himself somehow. Nik became entrenched in this line of pretend play and I didn’t know what to make of it. What was he trying to tell me.

He asked for the doctor by name yet again. Knowing how he might respond if I asked the question the same way as before, I changed my approach, asking him what he wanted the doctor to FIX. His reply blew me away,

“Fix head feel hurt.”

Always, ALWAYS presume competence and understanding. Even when you can’t put the pieces together, they are there. They have meaning even in their seeming randomness. Never give up.

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On our way to school yesterday—

NIK: One, two.
ME: I don’t understand; can you use your words to tell me more?
NIK: I.want.candy.one.two.please.
ME: Thank you! Here you go.

I hand Nik two tic tac candies.

It’s a game we play each morning. It started years ago as a way of encouraging counting skills. Clearly, we are beyond that now and we have modified it over time. Now, I use this same exchange to work on language skills and, sometimes, concepts.

NIK: Three, four.
ME: I understand, but you just had two. You need to wait.
NIK: Three, four, please.
ME: Tell you what, buddy, you may have three and four after we pass the fire station.

As I hear the words come from my mouth, it occurs to me—I don’t know if Nik really understands. We don’t exactly narrate our daily travels anymore and we don’t know any firefighters. Other than a character in a story, I’m not sure Nik’s really been exposed to the idea of a fire station. I mean, we drive past the large brick edifice multiple times a day—on the way to school, on the way home, when we go to the store, the park, the pool.  It is a landmark known to everyone because of both its importance and its location. We take it for granted as simply another part of the scenery.

NIK: Three, four. Now, please, Mama.
ME: No, sweetie. You need to wait until we get to the fire station. Do you know where that is?

I see Nik sign “yes” in the mirror, but I’m not convinced he really knows.

As we approach the intersection, the light turns red; I ask Nik to point to the fire station. He points, vaguely, to the right side of the car; the fire station is on the left. Realizing he doesn’t know what I’m talking about, my heart lurches a little.

In that instant, it becomes vitally important to me that my son understands what the fire house is and where it is— as if it’s a confirmation that he does, indeed, have things in common with his typical peers. After all, all boys love fire houses and fire engines, right? I sigh, wistfully, and remind myself that it’s okay if he doesn’t. Maybe.

ME: (clearly refusing to give up as I point to the fire house on the opposite corner) Nik, look. That’s the fire station. It’s the house where the fire engines live. Can you see it, buddy?
NIK: Fire engine.house. Fire engine house. Inside.
ME: Oh, sweetie, we can’t go inside. We have to go to school.

The light changes and we begin to drive. I tell myself it’s a start; we can keep working on it.

As we drive past the fire station, I hear some rapid vocalizations from Nik followed by a flurry of beeps from his device.

NIK: Fire engine. Sit. Fire engine. Sit.Later.
ME: Can you use a sentence so I understand what you mean, sweetie?
NIK:  I.want.sit.fire.engine. Today. I want sit fire engine today, please, Mama.

And that, my friends, is how it started to rain inside my car, forcing this mama to drive to school without being able to see a thing.  It is also why I am now on a mission to take my boy to the fire station as soon as possible.

Nik during one of his many hospital stays. This was his first birthday.

Nik during one of his many hospital stays. This was his first birthday.

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The natural patterns and rhythms of verbal communication do not come naturally to Nik. Despite the fact that he’s had his speech device for three-plus years now, he still struggles with parts of speech and being able to put words together in a way which is understandable to “outsiders.” It’s just a part of how his brain is wired. Much of Nik’s default method of communication is “telegraphic,” meaning that he will use one word for multiple meanings and that meaning is figured out by the listener who must either be psychic or must elicit more information to determine the context in which Nik means them.

For example, Nik may say “Park Daddy” to mean any of the following:

I want to go to the park with Daddy when he gets home from work.

I went to the park with Daddy this morning.

Will Daddy take me to the park?

I like going to the park with Daddy.

In speech therapy, Nik is working on using “action words” to go with the things he labels. For example, when he says “Park Daddy,” Ms. K will ask what actions he can do at the park– swing, climb, etc. They work on pairing nouns with verbs and reinforcing structure and the relationship between them. It’s a painstaking process which needs to be supported consistently– not just in his twice weekly sessions with Ms. K.

Nik loves to chatter to me as we drive along to the store after school or on the weekends. I try to encourage and coach his language use all the time. Lately, though, I can tell that Nik finds it annoying. I can’t say I blame him; who likes to be grilled all the time, right? Sometimes, he flat-out refuses to participate and changes the subject to avoid the work. Others? He plays me like a fiddle and I don’t even realize it until it’s too late!

* * * * * * * * * *
On the way home from the store yesterday, we shared a small bag of chips. As we drove along, I doled out chips every time Nik asked “more chips.”
“Nik, what actions can we do with chips?”
We’ve done this exercise often enough so I knew, from the silence in the back seat, that he was processing the fact that chips are food and you can eat, bite, or chew food.  Uncertain if I would need to prompt him with possible answers, I asked again.

“Nik, what is an action we can do with chips?”

I heard the quiet beep of Nik activating the screen on his device to answer.

“H-O-L-D bag.”

Well played, son. Well played.

* * * * * * * * * *
I promised Nik we would go to McDonald’s after his therapy this morning. He was extremely excited.  We don’t dine there with any remote degree of regularity; I try to save it for special times (or travel emergencies) and he loves going inside to eat.   On the way to see Ms. K, Nik and I were discussing what he would have for breakfast. He suddenly got stuck in a loop and began to perseverate on eggs.

“Eggs, eggs, eggs, eggs…”

Doing my best to help him break out of it, I tried to expand the language. “Nik, what can you DO with eggs?” I asked.

“Eggs, eggs, eggs, eggs…”

“Nik, there are lots of things we can do with eggs, right? Eggs are food and we can…” I began to sign eat, bite and chew as possible clues for him.

“Eat, eat, eat”  he replied from the back seat.

“Very good! That’s right. We can eat,” I signed. “Or we can Buh…” as I signed the word bite and made the sound of the letter B.

“Eat, B-”

I could tell he was about to spell it out and I started to nod in approval.

“…A-C-O-N. Eat bacon. Eat bacon.”

Yep, I’d say he’s got the important stuff down pat.

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Wordless Wednesday: All that matters

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Sitting at the breakfast table with my family… Just letting that sink in a bit…

Watching as Nik manages his bowl of cereal and banana, his scrambled egg and sausage, and a small glass of almond milk (hello, bottomless pit and hollow legs!). So very typical and yet…not. It occurs to me that, once I’ve prepared his food, the only assistance he needs lately is an occasional admonition to use his napkin or to slow down. To take a break from his methodical shoveling of everything into his mouth until it is overflowing.

I look across the table and watch my husband watching our son. He catches my eye and we smile. “You catching all this?” I ask with a lump in my throat. His only answer is a giant smile which transforms his face into pure joy.

So many years we worked with Nik to just be able to sit in a chair without falling over, to hold a utensil , to lift a cup. So many years we worked with professionals, like our beloved Ms. Michelle, to help him learn to tolerate textures, to initiate a swallow, to chew. Teaching him how to drink from a straw, to suck, swallow and breathe. The things which come naturally to babies but not to our child who spent too long on a ventilator and too long with tubes in his nose and mouth. All the years we wondered and worried, “Will he ever…”

The answer sits at our table in his very own chair with is very own place mat, dishes and utensils. It all looks so…normal.

It looks an awful lot like a resounding “YES!”

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So, this happened recently:

*ring, ring*
Me: Hello?
Caller: Hi, Mrs. Andersen, it’s Ms. G (the SLP from school).
Me: Hey, what’s up?
Ms. G: I’ve been working with Nik this morning and he’s been doing such a great job using his verbs! He said “Call Mama” so I thought I’d reinforce his excellent communication with a special treat. Hold on, I’ll put you on speaker.
Me: (possibly a bit squeaky from the sudden lump in my throat). Hi, baby! Are you having a good day?
Nik: Hi, Mama. Swim.
Me: Did you swim today?
Nik: Swim all done.
Me: I know, sweetie. Who did you swim with?
Nik: Swim Mr. Mike. All done. Walk. Goodbye.

With that, he hung up Ms. G’s cell phone.

And then my heart exploded and my face leaked everywhere.

“I just called to say I love you. I just called to say how much I care. I just called to say I love you and I mean it from the bottom if my heart.”
~ Stevie Wonder, “I just called to say I love you”

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My child’s life has been wrapped up in hospitals since the day he was born. Ironically, it’s the place he is most at ease; he knows the equipment and routines. He’s not afraid to tell a doctor they didn’t look in his ears or to ask the phlebotomist for her tourniquet. (Relax, our answer is always a resounding NO!) He knows how to work the otoscopes and the blood pressure monitors, the pulse oximiters and the electronic scales and where they keep the disposable caps for the thermometers. It’s all just second nature to him and we don’t give it much thought.

We’ve walked this hallway what feels like a million times through the years— many of them as recently as this past week. The pictures on the walls haven’t changed, the faces are pretty much the same. It works for us– for him, the routine, the predictability and familiarity. He knows Ms. M at the coffee shop who waits patiently as he orders his “cookie chocolate” with his speech device. Mr. John, the valet attendant, who always gives a smile and a fist bump and who never, ever makes it a problem if we want to play on the playground even after the car arrives. My little ambassador knows the nurses in varying departments by name and remembers the color of the stethoscope everyone wears. Dr. C? Red. Dr. D? Black with tape. Ms. T? Green…and so on.

Today, we’re winding down from a very long morning of appointments on the heels of a week’s worth of appointments and disrupted routines. I can tell he’s off kilter and out of spoons. I’m kind of feeling the same way. It’s been a hard break at the end of the school year and he’s missing not only his routines and outlets, but his very best school friend.

Him: Marcus, today
Me: No, baby, not today. (*crack* there goes my heart breaking just a little bit more with each repetition of this exchange)
Him: Marcus, school tomorrow.
Me: No, baby, not tomorrow.” *crack*
Him: Maybe.

My beautiful, loving boy. So hopeful. So resilient.

He stumbles against me periodically as we walk, loosely holding hands; I can feel his weariness. He looks longingly at the wagons of the other children going by. I silently berate myself for not getting a wagon for him; he’s tough but even he has his limits and his legs have been aching so much lately. If we weren’t in the home stretch heading off to get our requisite cookie for the long drive home, I would absolutely get a wagon.

He stumbles again and I feel him pull away from me, his hand slipping from mine. Suddenly, I’m on high alert as he darts to one side. Instantaneously, I scan the area and evaluate the possibilities of where he is heading. I see an office door tucked into the wall up ahead and dash to cut off his inevitable entry. I beat him to the door which wasn’t his target after all. His destination was something I hadn’t even contemplated.

He stops suddenly and cranes his neck upward to look at one of the many images which have become so much a part of our, my, unconscious mind. His spindly arms reach upward toward the mural – almost in supplication. One hand on the image, he is utterly transfixed. Relief washes over me. “Nik, what on earth—“ I begin. Then, I see the image on the wall. I am unable to breathe and I feel slightly dizzy. I am suddenly sucked into a vortex. Unbidden, hot tears course down my cheeks; I couldn’t stop them if I tried.

I watch as his delicate fingers reach up to touch the face of the child in the image—an infant on a ventilator. The woman – I’m assuming she’s a nurse because of the scrubs, but also because of the tender way she is cupping the top of the infant’s head—looks nothing like any of the nurses who spent so many months by our side all those years ago. Yet, suddenly, I can see their faces and hear their voices.

I can hear it all so clearly—the hum and whoosh of the ventilator, the sounds of the automated blood pressure machinery. I can hear the sounds of the gentle crooning as they shushed and soothed sick babies. And the alarms—oh, God—the alarms. I can feel the sudden, urgent energy in the room when something went terribly wrong. And the tears and stricken silence following the unthinkable.

I don’t think about those things often—seldom consciously. Yet, I can’t help but wonder at how deeply they have been etched into my psyche. How little it takes to trigger the emotions and memories.

Nik’s finger traces over the image of controls on the ventilator. He turns his head to me as if in question, but I don’t know what he’s asking. Could he possibly remember? He was so tiny, so fragile—weighing barely more than a pound of butter. Is it even possible? I can’t help but wonder. Is his sudden, reverent fascination with this particular image on this particular day because of an offhanded remark I made to a nurse today about how little he weighed and how long he was in the hospital? Does he have those visceral flashbacks, too?

I can point to specific habits and traits he has developed as a direct result of his 209 days in the NICU—habituation they call it. The way he likes to fall asleep all scrunched into a ball with his feet and head pressing against something? That’s a vestige of all those months cocooned in a bendy bumper. The way he can sleep through almost ANY sound, but cannot sleep alone in his room. The way he constantly needs music in the background of whatever it is he is doing. But, never, before this dizzying, heart aching moment, have I ever suspected he had more than hazy awareness of his time in the hospital.

I have kept my own memories and emotions so neatly compartmentalized that I simply assumed he had no real memory of any of it. It’s been easier for me to cope with my own waves of remembrance that way. The thought that he might have powerful conscious memories of his difficult sojourn tears at my heart. If I, at nearly 50, still cannot process it all without falling apart, what must it be like for him? How does he process all that happened to his tiny body and tender spirit without the layers of cognition and understanding?

I don’t have any nice neat wrap up to this story; it’s unfolding as I write. I’m processing as I go. Apparently, so is my son.

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Doing the Write Thing

A milestone many, many years in the making. It’s still a work in progress (especially the letter k), but it’s finally happening!

My boy is so proud of himself, so happy when he writes his name. It’s his new favorite thing to do and he does it everywhere — with his fingertip on the side of the bathtub at night, on the playroom walls, tracing his name on the glass of the storm door as we wait for the bus. When he thinks I’m not listening, I can hear him softly trying to sound out the letters one by one. “Mmmmm, ihhhhhh, kuh.” (He cannot articulate the sound of many letters, including N.)

Waiting for the bus this morning:

“What does that say, sweetie? What does it spell?”
His nimble fingers fly to his device to answer — name.

He knows it is his.

“That’s right, love, it’s your name. Can you say your name?”  Knowing full well he cannot articulate the actual sounds into one fluid word, I have no expectation of a response, but he tries; he always tries.

Today, however, he voices an unexpected and enthusiastic “Guh!

Startled, I smile widely and feel the sting of tears in my eyes.  He knows he has surprised me and his face splits into an infectious grin as he claps with glee at his cleverness.

My boy is nine. I don’t expect that he will ever use his laborious manual writing for more than signing his name, but I am so incredibly proud of his efforts and his perseverance; both are –in spite of the continuing state of flux of his health and his daily challenges– such constant facets of my amazing child.

The only things more constant are the love and pride I have for him.

 ******************************

Today, Wednesday, March 6, people around the world will unite their communities to Spread the Word to End the Word®, as supporters participate in the 5th annual ‘Spread the Word to End the Word’ awareness day, aimed at ending the hurtful use of… the R-word (“retard(ed)”) negatively impacting people with intellectual and developmental disabilities (IDD). Language affects attitudes. Attitudes impact actions. Special Olympics and Best Buddies International encourage people all over the world to pledge now to use respectful language at www.R-word.org and build communities of respect and inclusion for all people.  I hope you will add your voice in support of these efforts. Your life may not be graced by a loved one with an intellectual disability, but I am sure you know someone whose life is touched on a daily basis. The next time you hear someone using the term as a slur, please speak up. For your friends, your loved ones… for my child.

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kaleidoscope

I’ve always been fascinated by kaleidoscopes.  Turn the tube one way and brightly colored glass particles create a gorgeous, perfectly symmetrical array of brilliance.  Many, many moments with my son are like that —dazzling; the colors almost hurt my eyes they are so intense and the pattern so beautiful.  Occasionally, if we’re lucky, we actually have entire days of lustrous sparkle and dazzling displays.  Saturday was a shining example of such brilliance within my son. 

We took Nik to the local Fall Festival at the same orchard that hosts the Peach Festival every August; there was nary a meltdown in sight as we drove to “the farm.”  With a few exceptions, Nik was like all the other children there —clambering over bales of hay to reach the top of the slides, running through the corn maze, laughing and enjoying the glorious autumn sunshine.  Never mind that he wanted to eat the pumpkins; he kept signing apple as he tried to lick the orange skin.  Never mind that he had no interest in the petting zoo except to try to climb the fence.  The whole experience was a gigantic leap forward from a year ago when Nik wouldn’t even go near the hay or the slides, and kept losing his still tentative balance while standing in the “sandbox” full of soy beans and corn; he just wanted to climb in and out without actually touching the beans or corn—a major sensory aversion for him.  I think we lasted twenty minutes before we threw in the towel.

This year, Nik managed to hold his own— even in the face of our forgetting to give him his medication before we left the house.  He tolerated a return drive home, not getting out of the car (which usually sends him right over the edge) and was pleasant and sing-songy the entire trip back to “the farm.”  Niksdad gave him his medicine and that was that; there were slides to slide and hills to conquer.

To say I was proud of my boy would be an understatement.

Sometimes the gem-colored bits slip and tumble— tripping and sticking on one another.  The slightest change can create a jarring, confusing jumble with no discernable pattern, no rhyme or reason to the splintered shards.  Lately, it seems our days are becoming more and more like this imperfect kaleidoscope.  The colors are still there —we see glimpses as they tumble around, but the pieces are in constant motion, the formation constantly changing.  Just when we think we can detect a pattern the pieces shift again, leaving us no closer to the serene brilliance we’ve come to expect as the norm.

I’d like to think it’s simply the time of year or a time of growth for my son which causes such tremendous shifts in his daily patterns; I don’t think I can anymore.  His behaviors have become more extreme —both the highs and lows—as I cling to a rapidly eroding sense of any middle ground called peace.  Sleep has become an elusive specter which will not settle comfortably upon our house.  Instead, it teases with brief snatches of slumber interspersed with longer periods of wakefulness. 

Here, too, there is no discernable rhyme or reason to the patterns.  One night is filled with painful shrieks and injurious wrestling.  The next is a cascade of gentle laughter and quiet singing as the moon dances in the sky outside my window.  We are left weary, without answers to questions we’re not even certain of any more.

The daily behaviors are becoming more difficult to laugh off and dismiss as amusing antics.  The long-awaited physical milestones —running, climbing, throwing— have crossed an invisible threshold and become potentially dangerous for their perseveration and lack of control.  The funny videos I post of Nik climbing or standing on the back of the sofa are funny —for a few moments.  Then, they become evidence of hazardous behavior as Nik is determined to master every physical space in reach; he cares not whether we admonish him to stop.

Our home is, bit by bit, becoming a Spartan fortress.  Little by little, we have had to strip away nearly everything from our family room —where Nik spends much of his time when at home.  The end table and lamp long ago gave way to a wall-mounted swing-arm light.  That quickly was replaced by a swag lamp suspended from the loft above.  The pictures on the wall and the handmade wedding quilt  have recently been removed to keep them safe from Nik’s curious hands and to keep Nik safe from broken glass or having an oak quilt hanger crash down on his head as he attempted to swing from the quilt.  Furniture has been removed from the room.

Moments of brilliance amid increasingly longer, more frequent moments of jarring disharmony.  

The boy we weren’t sure would walk now runs everywhere.  Even his orthopedist recently remarked at how fast Nik is.  His exact words—as Nik took off at top speed down the hallway on Tuesday: “Holy cow, look at his acceleration! Give that kid a football!”  I live in abject fear of Nik getting away from me in a parking lot or in the street. 

The boy who, for years, wouldn’t raise his arms over his head now has amazing upper body strength; he can pull himself up and over nearly everything.  If he can get a good hand hold and something to push his feet against, Nik can climb anything.  I can no longer take him shopping unless I have help because he can climb out of the cart faster than I can get him back in.

The boy who has been aloof for years now wants to be in physical contact with people all the time.  Sitting or holding hands together is not enough.  He wants to be climbing my torso, flipping himself backward in a somersault and doing it again…and again and again.  He wants to ride on his daddy’s shoulders so he can hang upside down by his ankles as he squeals with delight.  Not once or twice but for as long as Niksdad can hold him.

The boy who was once oblivious to his surroundings now sees everything.   His compulsion to touch everything, to explore and dissect and analyze is all-consuming.  On one hand, these are all very good things — until he begins, literally, climbing over his neurologist to get his stethoscope or the reflex hammer.  The doctor, a really wonderful sport who adores Nik (thank God!), puts Nik down only to fend him off moments later —repeatedlyI do not sit idly observing; I am in the thick of it trying to keep Nik occupied sitting on the floor.  It is a fruitless endeavor; I finally end up having to hold him in my arms —like a sack of writhing potatoes over my chronically aching shoulders.  I am drenched in sweat by the time our visit is over. 

Sadly, this is not a one-time occurrence.

We once thought it was wonderful the way Nik explored his world so physically; it was a necessary part of familiarizing himself with the world he was unable to experience for so long.  Now, it has become a danger as well as a distraction; Nik is unable to sit still long enough to complete a simple puzzle or to play a short game of matching images.  He is no longer available for more than the briefest moments of learning.  Nik is a rapidly growing, strong —and incredibly smart— whirling dervish; we need to be able to harness that energy so our brilliant boy can learn.

We’re on the verge of adding yet another diagnosis to my child’s already hefty dossier — ADHD.  We’ve fought it for a long time, trying to help him with diet and activity.  However, the current situation is simply untenable— for all of us.  Reluctantly, we have begun exploring medications which might help Nik with some of his restlessness and impulse control. 

But there are challenges of side effects which, while never desirable, could actually be dangerous to Nik’s health.  We’re limited to certain medications because Nik still won’t chew and swallow more than soft foods or crackers and dry cereal; he certainly cannot swallow pills yet.  The remaining options can put him at significant risk for heart troubles because of his cardiac history; we have to get a full cardiac work-up before we can even consider certain meds. 

Then there’s the whole loss of appetite side effect which can be significant with some of the meds available to us.  That’s a huge concern to us given Nik’s feeding issues and history of failure-to-thrive.  Though he’s growing well now, Nik is still not even on the growth chart for weight in his age range.  My sinewy boy is still able to wear size 3T pants— despite the approach of his sixth birthday a mere seven weeks from now.

The final issue is Nik’s hypersensitivity to any medications which alter his central nervous system.  Seriously, the slightest changes can send him right over the edge; the highs get higher and the lows get lower —and the swings are faster than usual. It’s not a safe situation.

Still, we’re largely out of other options right now.  Even the neurontin —which significantly helps with Nik’s mystery pains —does nothing for Nik’s sleep.  Nor does the melatonin help.  Nik wakes every night now —multiple times most nights, at predictable intervals— and stays awake for a while playing or singing in his crib.  During the day, the combination of extreme hyperactivity and utter lack of impulse control makes it nearly impossible for me to leave Nik alone for more than very short periods of time any more.  The added layer of significantly disturbed sleep compounds our respective inabilities to cope with the stress.

It feels like a deal with the devil; we’re damned if we do, we’re damned if we don’t.  Yet, the cost of doing nothing is too great any more. 

The kaleidoscope turns and the fragments tumble again.  What will we see as the shards settle into place— chaos and disarray or brilliance and beauty?  One masks the other at any given moment.

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The shoes should have been our first clue.

After a perfectly delightful morning —one which began after more than twelve hours’ sleep for Nik and a leisurely breakfast for myself and Niksdad— we began our preparations for a jaunt to the local peach festival, followed by a visit to the park.  The pre-departure routine is always the same: “Okay, buddy, time for some clean pants.  Bring your toy and let’s get clean pants.”  “Clean pants first, then socks, MAFO’s and shoes.”

Nik is always eager to perform this routine; he loves to go out with us.  Lately, he’s begun to put his orthotics on by himself —even getting them on the correct feet.  He was just beginning to clamber onto the sofa, where I sat waiting with wipes and pull-up in hand, when Niksdad brought over his socks, MAFO’s and shoes.  The scream which issued forth from my heretofor sunny child was unlike anything I’ve heard except when he is in extreme and urgent pain.  It was the kind of sound which makes my heart race and causes me to drop everything and come running in an instant, certain I will find my child covered in blood.

There was much wailing and gnashing of teeth (to put it quite mildly) until we figured out the problem: the shoes.  Perfectly good, serviceable Nike’s which Nik has worn on many occasions though not for sometime.  (His other Nike’s were so filthy from repeated outings to the park— the laces were nearly black— that I insistedwe wash them last night; they were still in the laundry closet, slightly damp.)  I put the offending shoes on the floor at my feet while Niksdad went to get the still-damp shoes.  Apparently, even that was too close for those awful shoes; Nik screamed and jumped off the sofa, grabbed the shoes and ran to the entertainment center to put them on top.  That’s were they’ve been sitting for weeks now; it made perfect sense to Nik’s sense of order.

Once Nik realized the “correct” shoes were going on his feet he calmed down.  In fact, he seemed quite eager for our outing.  Off we went on our merry way.  “We’re going to get ice cream first, then go to the park. Ok buddy?  Ice cream first, then park.”  I repeated that phrase, like a mantra, as we drove.  Nik is usually pretty good about changed routines or routes as long as I tell him the sequence several times over.

I should have known that the shoe incident had my precious boy already wound too tightly.  As soon as I turned right at a traffic light where we normally turn left, Nik’s tenuous balance shifted and the tempest began.  I talked to him in soothing tones as I drove.  “It’s ok, sweetie, we’re going to get ice cream first then go to the park, remember?  It’s ok.  You’re ok.”  All the while, Niksdad held on to Nik’s feet so he couldn’t injur himself (or us) with his kicking.  I drove with one hand on the steering wheel and one hand holding Nik’s sweaty fingers, gently squeezing to give him some proprioceptive input which I hoped would calm him.

We parked right next to the entrance (God bless our disabled parking placard!) and waited for the storm to abate.  When Nik didn’t seem to show signs of calming, Niksdad said tersely, “This isn’t going to work, let’s just skip it.”  His frustration level was, understandably, rising with each howl and each kick which landed on the back of his seat.  Not realizing that Nik was already overwrought and wound too tightly, I insisted we at least get out of the car and try

There have been times when simply getting out of the car has shifted Nik’s attention enough that he is able to calm down and we end up having a decent outing.  I also felt very strongly that we neededI needed— to not be held hostage to the autism.  We spent the first two years of Nik’s life sequestered away from everyone and everything because we had to protect Nik’s fragile immune system.  We’ve spent much of the last couple years isolated from nearly everyone and everything except the occasional family outing.  At some point, I felt, we just have to say “Damn the consequences!” and try —just try— to be a part of the very society in which we want our boy to thrive.

Today was not the day for that.

We never made it to the ice cream or the petting zoo.  We pulled into the parking lot at the park and Nik fell apart again.  By this time, he was so overwrought he couldn’t tell us anything.  “Are you hungry?” Nik signed please so we offered him a bite of his sandwich; he thrust it at me and screamed.  “Do you want to go play in the park, sweetie?”  He simultaneously signed please and shook his head no.  I started to hum Mary Poppins songs to calm him.  It seemed to work until I stopped.  The wailing began again.

We drove home to nurse our wounded hearts and try to figure out what our boy was telling us, what he needed.  As we pulled into the driveway —like magic— the tears and tantrums abated and the happy singing began.

**********

Nik has now had lunch and is a very happy camper —singing Mary Poppins and Signing Time songs to his toys, playing with his alphabet puzzles.  We may attempt the outing again in a while —or not.

It’s so hard, trying to find the right balance between stretching Nik’s boundaries and honoring his needs.  Between giving my child what he needs and giving myself what I need.  Trusting my instincts and listening to the voice in my heart that says “We have to try…”  The lines are hazy and constantly shifting —like walking on a sand dune in a headwind. 

I believe we are at a crucial point in Nik’s communication development:  the more he knows he can make himself understood —and the fewer tantrums as a result of that success, the more intensely frustrated he becomes in those instances where he cannot make himself understood.  The extremes seem to be farther apart and I feel stretched to my limits straddling the chasm.  But I’ll write more about that another time —after I mull it over some more.

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