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.


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?


(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.


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.


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.


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.


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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Celebrate good times, come on! (Let’s celebrate)
Celebrate good times, come on! (Let’s celebrate)

There’s a party goin’ on right here
A celebration to last throughout the years
So bring your good times, and your laughter too
We gonna celebrate your party with you

Come on now

Let’s all celebrate and have a good time
We gonna celebrate and have a good time

It’s time to come together
It’s up to you, what’s your pleasure

Everyone around the world
Come on!

Yahoo! It’s a celebration

Celebration ~ Kool & The Gang

Lots to celebrate here this week!

Our anniversary. Hurray! Niksdad and I actually got to go on a date on Friday night —candles, wine, good food, and a drive in the country to reminisce about the wedding night we spent in this quaint little bed and breakfast. It was really wonderful to reconnect and relax. Of course, we did talk about Nik’s CT scan results —a lot. But we had a lovely time. I think it was the first time we’ve been out for a nice dinner (and without Nik!) since before Nik came home from the hospital. Hmmm…I think we need to get out a bit more, don’t you?

Family. In my family, the span from Mother’s Day through the Fourth of July is insane. In addition to the Mother’s Day/Father’s Day/Independence Day celebrations, we have eight birthdays and four anniversaries. So, this past Sunday we got together at my sister’s for a family barbecue and pool party. This year, to add to the excitement, we also celebrated Niksdad’s passing his LPN board exam, my eldest niece landing a great internship she’s been hoping for (in the music/recording industry), and my sister’s engagement! It’s her second time around; we all really, really like the guy she’s marrying. I especially like him because he adores Nik and makes sincere efforts to meet him where he is. He doesn’t ever ask stupid or insensitive questions and he’s always willing to lend a hand watching Nik so we can eat, swim, or whatever it is that everyone else is doing that we usually sit on the sidelines. He’s a great guy and I’m very happy for my sister.

Changing Insurance for Nik. Hey, this is a biggie! We changed managed care organizations (MCO) through Medicaid and have recently discovered some pretty nifty perks. Our pediatrician is apparently rated as a “gold star provider” which means that any referrals written by her do not require any authorization. That’s right —NONE. So those prescribed twice weekly PT and OT sessions which the previous MCO denied on the basis of “Nik should be in school so school would be providing these services” (never mind they’ve been deemed medically necessary and truly are)? Covered without a blink of an eye. We start our new schedule with Miss D and Miss T in just a couple weeks and we are all so excited to see how Nik blossoms even more as he gains new skills.

Nik is thriving and happy again at PT/OT. Don’t know what the turning point was but Nik has now decided he loves PT and OT again. No more tears. In fact, yesterday we couldn’t get him to leave! He actually ran away from me when I told him it was “time to go zoom-zoom home.” He’s been so much more engaged and lively; he’s really been seeking interaction with people so much more lately.

Our visit to the ENT today. You know, sometimes we get so accustomed to all the weird, unusual things that go on with Nik (well, okay, in our defense his history is pretty chequered!) that we tend to see bogey men everywhere we turn. And, given the questions we’ve been asking for a year now about Nik’s head pains and ear problems, it was a natural leap to make when Dr. Mary called on Friday afternoon. But this time, it really isn’t a big deal after all. Normal, ordinary childhood ear stuff.

Turns out that none of us knew Nik’s myringotomy tube in his left ear had worked its way out (which is normal) quite some time ago. Unfortunately, Nik also has a significant propensity toward fluid build up in his left ear. And his adenoids. In other words, as the doctor put it today, “If you do a scan on a kid with a snotty nose, stuffy sinuses, and fluid in his ears, you can get a scary looking scan. But you have to look at the clinical presentation, too.” No signs of infection —whew! But then, we kind of already knew there was no infection.

So we’ve discontinued the nasty antibiotic. Not a moment too soon, either, since it’s begun having awful gastric side effects after just a couple of days! But we are looking at surgery to put in new tubes and to remove Nik’s adenoid. It’s not a guarantee that Nik won’t have pain or ear infections —there is so much surrounding the ear that it’s possible the pain is actually referred from somewhere else —but it will most likely minimize the snotty sinuses and will help with Eustachian tube function so the fluid shouldn’t build up so much. It’s not a magic answer —we didn’t expect one— but it does give us a measure of comfort we didn’t have before. Niksdad and I agree; we would rather have this surgery than put Nik on yet another medication which has significant long-term repercussions and side effects.

And, frankly, since we’ve decreased his daily Depakene level by a third, we’ve seen such a tremendous shift in Nik’s attention span and level of interest/engagement that we are loath to give him something which might dull his senses again. We really enjoy the little boy that is starting to emerge and can’t wait to see how he does as he begins to feel better.

As for all this celebrating? I feel a bit rusty at it but I’m sure I’ll get the hang of it again.

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When I was a much younger woman —in my wild and impetuous days as a single gal in NYC— I had a friend, Anne. Anne was roughly a dozen or so years older than I and was a single mother raising two young pre-teen boys. Though Anne was far from perfect —she reveled in being right about things (and she usually was) — she had a heart of gold and a righteously protective streak a mile wide. She would offer me the shirt off her back, the food in her cupboard, and a soft place to land when my world came crashing down around me. She was also the first to stand by a friend in need —“fighting the good fight”— or to teach that same friend how to stand up for herself. We lost touch a number of years ago through simple neglect; our paths diverged so greatly after the birth of my son, the geographical distance between us, and who knows what else.

Anne always had a habit which annoyed me to no end; every time we would go out to eat, she would ask me if I wanted to “join the sharers club.” She always wanted to share whatever we each ordered; I, on the other hand, never wanted to share. Call it miserly, greedy, thrifty —I was, after all, a single woman living alone and pinching pennies in a very expensive city— but I really got annoyed. Anne never took it personally though. She would simply smile and say, “Aw, sweetie, you don’t know what you’re missing. One day you’ll realize the joy of sharing.”


Amid the clatter of emptying the dishwasher —Nik’s laughter echoing through the playroom and into the kitchen— I hear the sound of uneven footsteps and the banging of a heavy object as it bounces along the floor. I turn to see Nik dragging one of his new toys over to the kitchen gate. As he hoists his little cash register toy up over his head, I fly to the gate to keep the toy from crashing to the floor. Nik stops mid-toss and laughs. “Are you all done, buddy? Do you want Mommy to take your toy?” I should know better than to ask a question like that; Nik doesn’t have the communication skills to answer such a query.

I take the toy from him and begin to place it on the armoire near the telephone —still in sight but safely out of reach. Nik begins to vocalize something and gestures at the same time —tapping the fingertips of his right hand into the palm of his left as if he’s making a “Tee.” My eyes widen in surprise. Am I seeing what I think or is it just a coincidence? I’ve seen Nik do that gesture before but assumed he was just copying the video and didn’t really understand the concept.

“Sweetie, do you want to share the toy with Mommy? Is that what you want? You want to play with Mommy?” Nik emphatically begins to pat his palm against his chest —his universal sign for “Yes, please. I really want it.” How could I possibly resist such an entreaty? Picking the toy up from its high perch, I carry it to the sofa and ask Nik to join me. He squeals as he races to the sofa and settles in so close to me that I have to put my arm around him so I don’t accidentally elbow him in the face as we play.

For fifteen minutes we share. We take turns and sing songs. Nik makes free with his kisses —a rare treat lately since he’s becoming such a Daddy’s boy. When he’s had enough, Nik signals to me that we are finished playing by picking up the toy and placing it in my hands. With one final kiss, he slides off the sofa in search of new entertainment. I sit dumbfounded.

Though I’ve not thought of her in a long time, Anne’s image comes to mind. I smile and realize I now understand her gentle words of many years ago. As usual, she was right.

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The loft at Nik’s house. Nik, having just finished his breakfast, is in the play room wreaking havoc. Niksmom sits at her computer typing furiously as she mutters under her breath.

Niksmom: $%$*&% stupid Medicaid…

Niksmom pauses, hands poised over the keyboard, and cocks her head. She listens to the sounds coming from below. Splat-splat! Pat, pat, pat!

Niksmom: Uh-oh, that sounds like bare flesh…not good.

Sighing, she stands and walks to the railing. Chortles at the site below.
Nik is topless and beating his hands on his chest and stomach like a proud ape. The missing article of clothing has been deposited over the gate into the kitchen.

Niksom (laughing): Nikolas! Put your shirt on, sweetie. Nikolas…pick up your shirt, please.

She pauses, then continues sternly.

Niksmom: Nikolas Erik, pick up your shirt.

Nik looks up and laughs at her.

Niksmom (more stern): One…Two…

Nik toddles over to the gate, crouches down nearly onto his belly to reach under the gate. He hesitates then picks up his shirt.

Niksmom: Thank you! Nice cooperation! Good listening, sweetie. Can you put your shirt on for Mommy? Go ahead. You can do it!

That’s right, head first…now put your arms in the sleeves. Try again. It’s okay, you can do it. Try again. Good job! Now the other arm…HURRAY!

Niksmom sniffles and reaches for the camera.


Okay, so Elmo is supposed to be on the front of the shirt. But, really, who cares when your kid has just followed directions, responded to a stern warning count, and put on his shirt all by himself for the first time ever?

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