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Archive for the ‘multiple disabilites’ Category

Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” ~ Mary Anne Radmacher

After our terrible, horrible no good, very bad morning you might think that Niksdad and I decided to lay low and stay close to home this afternoon.  You’d be mistaken.  After a hearty lunch and some down time for Nik —and a healthy dollop of analysis and brainstorming by Niksdad and me— we decided to try our luck a second time.  After all, the festival is only one day a year and the orchard offers free peach ice cream cones—made from their own peaches— which is heavenly!  Even Nik adores it.

I am happy to report that the outing was a rousing success!  Nik managed to consume an entire cone by himself —along with a goodly portion of mine!  We even managed to get in some play time at a nearby park which we’ve recently discovered.  Nik was so happy all afternoon; he sang and clapped and raced around the park without a care —exactly as we had hoped it would be.  He even picked up a sweet little guardian angel!

I don’t think it’s an exaggeration to say that our afternoon was the antithesis to our morning. 

So what was different the second time around?  Nothing, really.  And everything.  I know, I know —that doesn’t make sense.  But, really, the things we did were so incredibly simple that I wasn’t even sure it would work.  We met Nik where he was.  To do that, we had to observe his behavior and listen to his cues.

Let me give you a little background which might help this make sense:

Nik is nonverbal but extremely intelligent.  He understands just about everything that is said to him, about him, around him.  He takes everything in.  He also has a very strict interpretation or understanding of certain constants.  One of those constants is that food is eaten while sitting in his booster chair at the table unless it is otherwise specified. e.g., “We’re going to Nanny and Granddaddy’s for dinner.” or “We’re going to a restaurant for lunch.”  (Snacks are a different category; he’s ok with eating them in the car, at the park, play group, etc.)

Nik is also usually very good about adapting as long as he understands the sequence in which he can expect things to occur.  Nik knows ice cream is food.  He doesn’t know that “going to get ice cream” means going somewhere —let alone somewhere new —in the car.  So, to Nik, “ice cream first, then park” would mean “We’re going to sit at the table and eat ice cream and then go to the park.”

Nik is also amazingly observant of his physical surroundings.  He can tell where we’re going based on the turns I take or the scenery along the route.  If I tell him that we’re going somewhere different —and I may have to repeat it many times to reinforce the message as I drive— Nik is, generally, ok with it.  Today’s destination —the orchard for the ice cream and petting zoo —took us right past the turn for the park.

Can you see where this is going?

Right. So here’s our happy-go-lucky boy —already wound tighter than a top from the shoe incident— thinking he’s going to sit and eat ice cream and then go to the park.  By the time we got to the orchard, not only had we not eaten ice cream but we’d driven past the park!  Poor Nik  was experiencing such tremendous cognitive dissonance that he simply could not function.  I’m not using hyperbole for effect, either.  By the time we returned home this morning, though he was happy and clapping when we pulled in the driveway, Nik was completely motionless and silent when we opened the car door.  It was as if he simply checked out for a moment to re-calibrate.

This afternoon, armed with those realizations, and the knowledge that Nik doesn’t know what the new place —the orchard— is, we realized that we had to give him only one part of the sequence at a time.  Otherwise, we risked the likelihood that Nik would fixate on “going to the park” and block out the rest because he couldn’t visualize it.  We also decided to try something that I’ve been meaning to try for a while —a rudimentary picture schedule to help Nik know where we are going in the car and why we are not going the way he expects us to go.  (Side note: Nik doesn’t seem to have this trouble with changing activities at home or at therapy; it’s only when we are driving places that he gets so rigidly attached to his expectations.)

I printed out two pictures to take with us.  We gave Nik the first one —a full size picture of an ice cream cone— before we got in the car and explained to him that we were going to “a farm” to get ice cream.  Oddly enough, though I don’t think we’ve ever taken him to a farm, Nik seemed to understand that concept.   Maybe it was simply because I named something that he understands as an actual place or, at the very least, a place that is not home?  I really don’t know.

As we drove along the exact same route we took this morning, I sang silly songs about eating ice cream and going to the farm for yummy ice cream.  Nik even got into the spirit when I asked him to show me how he eats an ice cream cone by, well, eating the ice cream cone picture!

eating pic of ice cream

Nik never once whined nor got upset the entire drive.  As soon as we arrived, he let Niksdad put him up on his shoulders and we made a beeline for the ice cream.  Nik’s reaction was all the proof we needed that we had done the right thing:

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After Nik downed an entire cone —and attempted to eat a few twigs, too —we asked if he wanted to go to the park.  He wasn’t quite clear about that so I asked if he was ready to go in the car.  That got a clear affirmative so we went and sat in the car.  Once we were in the car, Niksdad gave him the second picture —a picture of a playground similar to that at the park —and asked if he wanted to go there.  The light bulb went on and our little dude was on board.

The rest, as they say, is history.

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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.

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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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The “Christmas that almost wasn’t” turned into a Christmas of delight and wonder. It was touch and go right up until Christmas morning as to whether or not we were all healthy enough to host a small Christmas dinner for my parents. Nik’s not sleeping well again; he seems to be suffering from that recurring “pain of indeterminate origin” which many want to dismiss as merely behavior. (Granted, it has diminished significantly since we stopped the Lamictal but there are some elements which remain.) My sister and her new husband were out of town on a short honeymoon, my nieces were scattered hither and yon, and with our current finances, well, it just didn’t feel like much of a celebration.

I longed for the big Christmases of my youth. Damned ghosts sometimes just don’t know when to quit, do they?

Yet, in spite of my malaise, Christmas went marching on and the presents kept coming. Here are the highlights:

The look on Nik’s face as Niksdad carried him downstairs on Christmas morning and he saw his new dump truck loaded with Mega Blocks and his Alphabet Train Station. Priceless. Nik was still sleepy and snuggly against Daddy’s shoulder until he saw the toys; he lifted his head from Daddy’s shoulder and his eyes went wide with delight. As soon as we put him down, he made a beeline for the dump truck. As I predicted the night before, it turned out to be his favorite item of the day.

* * * * *

After spending an entire day out and about with his Daddy, Nik was patient enough to wait in line for ninety minutes on Christmas Eve with his Daddy to see Santa —just for Mama! It was late, it was nearly his dinner time and he was on the verge of sensory overload. The photo isn’t the greatest but the experience was wonderful, according to Niksdad; he can’t stop bragging about how great Nik did. “Santa was blown away when Nik signed ‘Thank you’ to him!” “And Nik’s tolerance was just incredible; he didn’t fuss or fight at all!”

* * * * *

Standing in the kitchen with my mother as Nik approaches the gate and starts to reach over for his “letter machine” (Fridge Phonics). I hand it to him and take some letters off the refrigerator door; Nik brightly chirps “Buh! Guh!” My mother’s jaw drops as she looks at my hand and sees… the letters B and G. Nik recognized them and knew their sounds without any musical prompts. He now recognizes and can tell me the sounds of E, M, H, and P as well.

* * * * *

Nik noticed the Christmas tree this year —enough to walk up and touch it in all its faux pine glory! I thought, perhaps, the twinkly lights would entice him to do more but he was sufficiently unimpressed with the texture and hasn’t given it so much as a backward glance as he races past it each morning en route to his beloved new dump truck! I now know he’s fully aware of its presence —just as he is aware of the cats; he just doesn’t have any compelling interest in interacting with it.

* * * * *
Nik responding completely appropriately as he opened his gift from his Nanny and Granddaddy —all by himself. Paper shreds flying as he sang and chirped. He opened the giant picture book and actually looked at a few pages and pointed to a couple of things I asked him to find. Then he signed “Thank you” to his grandparents as they beamed with pride. They, too, remember the years he wouldn’t touch the paper or would only play with the bows.
* * * * *
Being able to share Christmas dinner in my home. We’ve all been ill and, on Christmas Eve, had actually canceled the plans to share dinner with my parents on Christmas Day. Since my sisters and their families weren’t with us this year, it felt sad and lonely. The “plague” lifted enough to assure my parents that it would be alright and we had a lovely, lovely time together. Mom brought the roast lamb and homemade gravy and I made everything else. It was a delightful meal in which Nik fed himself some mashed up baked potato and sour cream, some stuffing with Nanny’s gravy (mostly gravy with a little stuffing) and made a terrible mess everywhere. But he was happy, he was included, and no one thought twice about whether his behavior was “appropriate” in any manner. Oh, and he even verbalized something that sounded kind of like “moh-moh” as he made the same for more… asking for more of Nanny’s yummy gravy, of course!
* * * * *

My father has, in the past, been somewhat dubious about Niksdad and my belief that Nik takes in everything and knows and understands far more than he is currently able to communicate to us. So, on Christmas, when I heard him say, “Nik really does seem to understand pretty much everything you say to him, doesn’t he?” in a voice tinged with pride and awe, I knew that he finally understands what we’ve been saying all along; autistic and nonverbal do not mean that Nik is disconnected from the world or that he is retarded. It felt like an important acknowledgment from my father.

* * * * *
Niksdad has been home on semester break so he’s been taking Nik out and about a lot. (Have I mentioned before how much I appreciate my husband?) The weather has been nice enough that they’ve gone to the park a couple of times. The reports usually go something like this: “He did great. He climbed a lot, he rode his bike, he played in the sand a little bit and we walked a lot.” This week the reports have been full of new and exciting things Nik has started to do. Things which require balance, visual attending, and greater depth perception (something Nik’s not exhibited any great strength in thus far).

* * * * *

Even Nik’s building with his Mega Blocks has taken on a new dimension —quite literally. Where he’s usually content to simply stack and build tall, thin towers, Nik has started to build out into more than one plane. It’s been fascinating to watch as he experiments and discovers different ways to use the blocks. His analytical ability often astounds me.

Then again, so many things he does astound me.

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Tonight it feels like I can’t catch a break even if I used a net.

My wunderkind is down again. A dear friend emailed me yesterday “apparently no one told Nik he has special needs.” Apparently no one told him he was sick, either.

Today was a bumpy day after a bumpy night in a string of bumpy nights. Then the wheels fell off the bus. Nik broke out in a very fine, pinpoint raised red rash on his back, his feet and ankles, his arms, under his arms…

What’s a mother to do when her child is on so freaking many meds and has multiple medical diagnoses? It could be from the antibiotic —unlikely as he’s taken this one many times with no side effects, but you never know. It could be —waaaay scarier —a rash caused by one of his seizure meds. We talked to our awesome neurologist this evening (he even gave us his cell phone number!) and he told us to stop the medication entirely. Not something that is normally recommended with this kind of med but he wanted to err on the side of caution as the alternative could be, um, potentially permanent.

Then again, it could be something viral like roseola. Or, possibly, something else entirely.

Yeah, Niksdad and I really relish the idea of spending a sunny, beautiful Saturday traveling to the hospital to have someone that doesn’t know anything about Nik tell us, “Um, well, we’re not really sure…” Yet, we have to cover all the bases —just in case. Nik’s fooled us in the past and it hasn’t been fun.

There’s a little more to the story but I don’t have the mental energy to try to tell it. Something about the increase in all the icky “mysterious pain” behaviors and the angst of watching my son struggle so. I tried to tell him tonight, as he cried and pulled me to him —clinging to me like a monkey —that his Daddy and I are trying really hard to make it all better. I think he understands that; I hope he does. My heart aches and I am frustrated.

Can’t we just deal with one stinkin’ thing at a time? ARGH!

And have I mentioned that I’d sooo much rather be at BlogHer with Susan, Kristina, Vicki, Jennifer, Kristen, Jordan, Stimey, and a bajillion other potential blogging friends? Or DisneyLand with my pal, Drama Mama, and her awesome girls?

*sigh*

(Thanks in advance for the prayers and warm thoughts.)

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But we won’t let nothin’ hold us back
We’re gonna get ourselves together, come on
We’re gon’ polish up our act, yeah
And if you’ve ever been held down before
I know that you refuse to be held down any more

Ain’t No Stoppin’ Us Now ~ McFadden & Whitehead

True to form, it takes more than a raging fever and another ear infection to keep Nik down for more than a moment or two. After a night of Tylenol and good dose of Zithromax, he woke refreshed and perky on Wednesday. Not quite full-throttle Nik —but close.

So, Nik has gone from the boy who fell asleep while actually playing with a toy on Tuesday

to —


Climbing to new heights on Tuesday afternoon and discovering the joys of dimmer switches.

Reaching the light switches from standing on the floor; I’ve reset my VCR/DVD player half a dozen times in the past 48 hours.

Learning the proper amount of force it takes to body slam the gate in the back hall open without making noise; we discovered this when we heard the inside garage door open yesterday afternoon. (Niksdad has since replaced the gate with something sturdier!)

Figuring out how to turn a cap on a bottle (great fine motor practice!). AND…

Operating a regular doorknob. (I’m hoping praying it was a fluke or beginners’ luck…)

My sanity was already hanging by the merest thread. It is gone; gone, I tell you. And I couldn’t be prouder…or more afraid!

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How much time do I spend in turmoil, wailing and gnashing my teeth, and wondering—

“Will he ever…?”
“Can he even…?”
“Why doesn’t he…?”

If I stop to remind myself that Nik does things in his own time, I am able to let go of the anxiety; Nik has shown me countless times that he is capable but he must find his own pace, his own rhythm. And when he finds that groove —that perfect chemistry that only Nik can know —magic happens.

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So many babies who have some sort of special medical needs from birth or shortly after —be it from extreme prematurity, genetic anomaly, or some sort of trauma or insult surrounding gestation or birth— end up being given so many medications; this one to stave off infection, that one to keep the heart from stopping periodically, another one to help with digestion, seizures, blood clotting —and so on. The longer term ramifications of these medications can not ever truly be known though reasonably logical conclusions can be drawn from years of accumulated data. Still, when a parent is faced with life and death choices, it can be more than difficult to weigh and measure the long-term effects of a particular drug against the permanence of losing one’s child.

One is forced to make imperfect choices with little objectivity.

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Nik began having absence seizures when he was roughly fifteen months old. At first, we thought they were simple staring spells —Nik’s little way of finding respite from the bombardment of sensory input which accompanied the revolving door of therapists and visiting nurses to our home and frequent trips to one or another doctor in the cadre of specialists for all of his -isms, -itises, and –oses. It wasn’t until he was two that Nik finally got an official diagnosis and began yet another medication.

We went through a few different meds before we found the one which seemed to be the most effective with the least negative side effects. Little did we realize that the cure would also bring about a new problem. Apparently, as we gradually ramped up to the appropriate maintenance dose, Nik began to experience a marked sense of disorientation and dissociation. He felt funny; his balance and coordination —already grossly delayed—were significantly impaired. Because we had no basis for comparison, Niksdad and I did not realize it.

With each incremental increase in the medication Nik felt the fuzziness invading his head. Because he couldn’t tell us with words or signs, he told us in the only way he could; he began waking with screams and howls as he shook and swatted at his head in his attempts to make the sensation go away. We never made the connection between the medications Nik received at dinner with the behavior which occurred hours later. The onset was so gradual that we thought there must be some underlying physical issue; something else had to be causing our son’s horrific discomfort.

A month after Nik’s third birthday, another medication was prescribed for the headaches we all— the doctors included— were certain were from some other source. The second medicine enhanced the effects of the first; a vicious cycle ensued. As we continued to increase the dose of the first medicine, the second one magnified the intensity of its effects on Nik. Nik’s once rapid progress with gross and fine motor skills seemed to stall; his previously voracious appetite completely disappeared. The smiling, laughing child I knew wasn’t replaced with something or someone else but his attention span began to dwindle greatly. Nik’s autistic characteristics became more pronounced; they were there all along but they became the first thing we saw more and more.

Can I prove any of this beyond a shadow of a doubt? Unfortunately, no.

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Though he loves to brush his teeth at home —sitting on my lap as we sing a song about brushing — Nik has always hated our trips to the dentist. I don’t blame him; he has to be restrained by strangers who don’t want to take the time necessary to allow him to explore and find his comfort level. Unfortunately, we don’t have a choice about dentists right now so we try to make the best of it; I still have to argue though to be allowed to hold Nik on my lap instead of sacrificing him to their care.

Having discussed the issue with the neurologist and the pediatrician, we recently decided to try a low dose of diazepam (valium) to help Nik relax a bit; if he’s not anxious about it he won’t fight, right? Wrong, wrong, wrong. WRONG.

You know how some doctors tell parents not to give their kids Benadryl or cold medicine before flying because it can have the opposite of its intended effect? That’s called a paradox response. Yeah, that’s what happened to Nik when he got the drug in his system. To say it wasn’t pretty would be a gross understatement. Picture your sweet little child strung out on PCP (Angel Dust); you’ll get the picture.

I tell you this not to garner sympathy but to illustrate a point. At the peak of his medically induced rampage, all of Nik’s previous behaviors relating to his episodic pain returned in full blossom —and then some. It was one of the worst things I’ve ever witnessed; doubly so because I knew that I had caused it. I knew that it was simply Nik’s mind and body reacting to the horrible, disorienting sensations caused by the drug; the knowledge brought no comfort.

Sobbing as I drove the 54 miles home with my feral child, I had a flash of insight.

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When we tried to increase Nik’s second seizure medication a few months ago, in preparation for weaning off the first one —the one we worried was causing headaches— Nik’s episodes of horrifying pain and related behaviors drastically increased; his temperament became more volatile and his meltdowns more frequent and more intense. As soon as we realized this and we reverted to the status quo Nik began to improve. After numerous discussions with the neurologist, we decided we should try to wean Nik off of the second medication instead; it has more long-term negative effects on cognition and liver function.

The change was not instantaneous but it was rapid. As we gradually decreased Nik’s daily dose of the medication, we began to see marked shifts in Nik’s attention span, his interest in social interaction, and his desire and ability to initiate play. With each decrease in dose it seems we have witnessed a blossoming of Nik’s personality and intellect; his keen problem solving skills have reached new heights. Nik’s motor skills and communication have been catapulted to a level we had not expected to see for quite a while longer. But the best and most important change we have seen?

The complete cessation of Nik’s episodic, debilitating pain. (Knock wood!)

Can I prove this theory beyond a shadow of a doubt? No, again. But the explosion of cognition, motor skills, and rich social interaction that I see in Nik on a daily basis tells me all I need to know.

Sometimes magic happens all on its own. Sometimes it needs a helping hand.

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