Posts Tagged ‘developmental disability’

Nine? How did that happen? In the blink of an eye you went from my fragile little micro-preemie –fighting for your life over and over again, to my funny, engaging, affectionate monkey!

We still have so many miles to go in this journey of ours together, so many things to learn and so much teaching to do in the world around us. But the one thing I hope you will always, always know is how very much you are loved. How very much you are cherished and respected. And how none of that is affected one iota by the things you can or cannot do in this life.

Happy Birthday, baby. You are my life, my soul, my heartbeat. You take my breath away every single day. You fill me with pride and wonder, perspective and faith. Though our road together has been so very challenging from even before your birth, I wouldn’t change a single bit of it if it meant you were any different than you are today.

I love you so very, very much.

A day without you

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Ok, so I know today is the whole Wordless Wednesday thing and I could skate by without a post and just slap up a cute picture of my kid and be done with it. But I can’t because, in this case, the picture is just a small part of the story. And this story is too good not to tell.

We’ve been going through a few bumpy stretches around here as we work to find a new equilibrium. Between Niksdad working nights now and getting less time with Nik, the wonky school schedule, the “super storm,” the broken speech devices (it’s fixed now!), the belly troubles, the ear infections and the early triennial evaluation of every aspect of Nik’s needs and services…yeah, bumpy. When we get into a challenging run of days, it’s easy to forget to look for the good stuff.

Like this:

He’s a great date!

So, what’s so special about a picture of my uber-cute son sipping on a beverage at our local Starbuck’s? The fact that he asked to do it.

Our pediatrician’s office is near a Starbucks with a drive-thru window. Whenever we go to the pediatrician, as we did yesterday for yet another raging ear infection, we stop at the drive-thru for Nik’s favorite treat: lemon cake. Nik only ever gets it after seeing the doctor. I don’t even recall how we started it, but it’s become a part of the ritual, part of the litany he recites endlessly as I drive with his speech device. “Doctor’s office first, lemon cake next!”

Over time, we’ve progressed from sharing a slice between us to Nik hogging it all to himself wanting a whole piece. I usually drive and sing and hand back a bit of cake here and there as we head home on the highway. It’s not exactly the neatest way to do it, but it’s always been such a hassle to try to wrangle Nik in public places with lots of things for busy hands to get into while Mama pays for stuff. In short, it’s been a sanity-saving measure for me.

As we passed the Starbucks on our way to the doctor’s office, Nik kept repeating the word inside on his device. “Yes, baby, we’re inside the car.” “Yes, Nik, we’ll be inside the doctor’s office soon.” I didn’t really understand what he wanted but was following the pattern of AAC use which is that you acknowledge every utterance so as to encourage continued communication. It’s become so ingrained that there are days I have to catch myself from doing this to my husband as he speaks!

I assume that I have interpreted Nik’s communication correctly because I didn’t hear it again. Until  I am about to turn into the drive-thru lane. From the backseat of the car, I hear it…

Inside. Inside, please. Inside, Mama. Inside. Want sit inside.

My boy knows what he wants and can tell me. My miracle child, who was once able to communicate only  through self-injury and tears, can make himself understood without endless prompting or cajoling! The magnitude of this milestone, years in the making, does not escape me. As I pull into a parking space, I am rewarded by the sound of laughter as Nik claps his hands in delight. Clearly, his success does not escape him either.

Once inside, Nik proceeds to use his device to tell the barista “Want lemon cake.” I admonish him to use his nice words; “Please,” he says in the quirky digitized monotone I have come to love. In this moment, the endless hours of teaching, prompting, shaping and modeling fade from my mind as I watch the naturalness with which he connects with the girl behind the counter.

For a fleeting moment, I tell myself I might consider buying a pony if he asked.

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I’ve always been a cat lover. It started long ago when my four-year old self woke to find the family cat having kittens– in my bed, under my covers! A series of family pets including dogs, cats and horses followed; the cats were always my favorite for their silent and fluffy unconditional love to an often lonely little girl.

In college, my beloved Tasha chose me as hers by climbing up my pant leg and forcing her kittenly affections on my cheek.  We had seventeen years together including several moves and many relationships. Tasha used to run and hide from all my boyfriends until my husband came along. I’m convinced she was waiting for the “right one” to come along before she finally succumbed to old age and kidney failure in my arms in the middle of the night mere weeks before my wedding.

Shortly after the wedding, my heart still ached with the loss of my Tasha and I wanted to find another cat to love. I was so sure it would be a boy because, well, no other female cat could possibly replace Tasha in my affections. Turns out I was both wrong and right and ended up with not one cat but two — a boy, Rascal, and a girl, Pandora.


Pandora was a feral rescue cat we adopted when she was about four months old. She was, and still is, an incredibly affectionate girl who loved nothing more than snuggling on my lap. When I was pregnant with Nik, she would lie on top of my belly and rest her head against my heart. I was on bed rest during my first trimester, so there was lots of bonding time between Pandora and me.  In hindsight, I think she was bonding with the baby growing in my belly, too. Though, in typical cat fashion, I suspect she was telegraphing messages of “I rule the castle and don’t you forget it, peanut!”

Nik was born three months early. The devastation of coming home from the hospital without my baby, the worry and waiting for the other shoe to drop because he was so fragile and his health so precarious, was made bearable by Pandora’s faithful and patient love. As I sat on the sofa, night after night, sobbing uncontrollably, she would silently nudge her head into my before wiggling her way onto my lap. It didn’t take long before she would drape herself over my shoulder –offering herself up as a giant furry tissue to catch the torrents of my grief.

When Nik came home from the hospital, seven months later, Pandora immediately bonded with him. Nonetheless, I had to constantly monitor her; being a slightly anxious kitty, she had a habit of indiscriminately chewing through things. Like the lamp cord she chewed through on one of the many days I spent at the hospital with Nik. I was worried she would try to bite through the oxygen tubing which trailed around the house, keeping Nik breathing freely. To my wonder, she never tried; it’s as if she knew that Nik needed her to watch over him.

When Nik napped, Pandora would circle a few times and lie down facing him. When he was awake, despite his inability to do more than sit in his bouncy chair or lay on a blanket, she would sit across the room watching warily. She kept her daily vigil faithfully and slept outside his room each night.

Shortly after we moved back east, when Nik was about fifteen months old and no longer on oxygen, the routine was pretty much the same. No matter where in the house Nik was, Pandora was almost always somewhere she could keep watch over him. Nik wasn’t yet sitting or even rolling over so she stayed relatively close.  Because she wasn’t allowed to sleep in our room (Niksdad has allergies) and she wasn’t allowed in Nik’s room for fear she would get into the crib with him, Pandora continued to keep her silent vigil outside Nik’s bedroom door each night.  When we went into Nik’s room to start the pump for his overnight feeds, Pandora would accompany me into the room and rub against my ankles until I picked her up. “See, girl, our baby is fine. He’s sleeping. Go lie down now.” And off she would go to wait in the hall.

I always thought she would have made an excellent mama cat.


The sounds of frantic meows at my bedroom door woke me from my already light sleep. “Pandora,” I moaned, “shut up! You’ll wake the baby!” I hissed and threw a shoe at the door in an attempt to scare her away. To no avail. Her meows became louder and more insistent. I got out of bed and threw the door open to shoo her away. She swatted at my leg and head butted my ankle and continued to howl. Something wasn’t right, but I couldn’t figure it out.

I picked her up to soothe her but she jumped out of my arms and darted to Nik’s door, pawing and meowing. Annoyed now, I scooped her up and shushed her. “Fine, you want to see the baby? He’s sleeping. He’s fine.”

When I opened the door, my heart stopped. I remember suddenly screaming as if the house were on fire.

Nik had not ever been able to roll over independently; it was an emerging skill we were working on and he could only roll in one direction. In his sleep, he must have rolled numerous times: the feeding tube was wound completely around his neck. The increasing tension on the tubing had pulled the pump stand over so far that it lay precariously perched on the very corner of the crib. One more turn or a slight bump would have sent it falling to the floor, tightening the tubing around Nik’s neck. Nik was asleep through all of this; he didn’t make a sound.  I wouldn’t have heard anything through the baby monitor which sat next to my pillow. Were it not for Pandora’s utterly uncharacteristic howling in the middle of the night, we would have never known there was anything wrong until it was too late.

Guardian angels come in many incarnations.  Nik’s has the softest fur and the sweetest meow.


Editor’s note:
Obviously, that was the end of Nik’s unattended nighttime feedings, but Pandora continues to keep her vigil to this day. During the years in which Nik woke screaming in pain every night, Pandora was always right there at my feet, waiting until all was calm and I would hold her over the crib to stroke her gently and show her that our baby was okay. Even now, she waits outside his bedroom door until he has gone to sleep.

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Today, I am grateful for the recorder. Nope, that’s not a typo, I swear! Yes, the recorder. You know, that simple carved flute which, through the ages, has made parents cringe and dogs howl as children endlessly torture the eardrums of everyone in a ten-mile radius attempt to make something resembling music. (See yesterday’s post for a visual.)

Now, in all fairness (and in my defense), I am slightly biased; my parents played in a baroque recorder ensemble when I was a young girl. I’ve always loved baroque-era music so I enjoyed it. Once a month, the group would meet at our home to rehearse — for what exactly I’m not certain; I don’t think they actually ever performed except for each other. But I loved those nights; mom would make coffee and serve some sort of snack and I’d sit in Daddy’s avocado green corduroy chair in the corner of the room and listen, maybe even do some homework.

Inevitably, as the group was about to call it a night, someone would decide it was a good idea to play a solo on the sopranino recorder. (Think piccolo-like but not as pretty, and far more shrill when played off-pitch.) We all would laugh with great amusement as our poor dog, Baroness, would sit and “sing.” Of course, knowing what I now do about sensory processing and hyperacusis, I feel badly that my poor pup was probably in pain.

I also have many, many fond childhood memories of listening to my Nana playing violin and recorder duets with my parents when she and Granddaddy would come to visit. Nana was a remarkably talented violinist who played with an all-female group called Polly and her Pals way back in the 1920’s or 30’s and who also once played as regular member of the chamber ensemble at Music Mountain in Connecticut. Call me weird, but I’ve always associated baroque recorder music with warm and happy memories. I had always hoped to share that love of music with my children.

A few decades later –the recorders have long since been given away and my beloved Nana and Granddaddy many years passed. Somehow, I ended up with a child’s music set which included a wooden recorder. It was given to us by well-intentioned friend of the family who knew Nik loves music. What she didn’t know at the time was that Nik doesn’t have the manual dexterity or control –or the oral motor skill—necessary to play any of the instruments she gave us. With more than a touch of sadness, I put them away in a drawer –along with sharing my love of music with my son– and forgot about them.

Nik is nonverbal. We don’t know if he will ever talk –and frankly, I don’t care as long as he can learn to communicate his wants and needs. He can make some vocal sounds including several letters of the alphabet. The letters he struggles with are the ones requiring shaping of his lips or the voluntary movement of air forward. He says the letter F by sniffling through his nose. Pretty smart, actually, since that’s pretty much the way he hears it. He can make the PUH sound for the letter P, but cannot blow air out as if he were blowing out a candle or pushing a cotton ball along a table top. Years and years of speech/communication therapy and it’s all been tried over and over to no avail.

Ironically, Nik is all about music and sounds and making the sounds have meaning. In his own way, he is a supreme linguist of a language so unique that almost no one but he and I understand it. Truly, he associates meaning with certain songs that even I can’t figure it out for a while. He also adores his once a week music class at school. So, when he started digging through a drawer the other day, looking for “triangle block” (don’t ask—I have NO.IDEA!), he pulled out the recorder and refused to put it away. Not wanting to make that my “hill to die on,” I let him have it.

Nik immediately brought the recorder to his mouth; I can only assume he’s seen this in his music class. God knows I haven’t shown him!  Then, a light bulb went off in my mind. Or is it that it went on? Either way, I had a Eureka! moment.

“What if I could use Nik’s ability to say the letter P sound and his love of music and sound to help him learn how to blow out of his mouth? I mean, it’s been tried a million times before, but, well…what if?”

It’s a work in progress, and I’m sure the day will come when I will regret it. However, for now? All I know is my son is, little by little and with growing confidence and consistency, learning to make that god-awful shrill TOOT! from that recorder. The combination of that sound and the laughter which echoes after are the finest music I’ve ever heard.

Someone remind me of this later, okay?

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Sorry to disappoint, my friends. I don’t have a pithy, meaningful or otherwise significant post to share tonight. The demands of the day and the need to prepare for an early morning appointment with Nik have me recognizing my limitations and acknowledging that I need to take care of myself; Nik and I will be on the road at sunrise and, though he’s grown and changed in so many amazing ways, his needs still require a great deal of logistical planning.

I am grateful for my ability to recognize and honor my limits. Tonight, I will don my Oxygen Mask and bid you sweet dreams until tomorrow.

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Nik can only verbalize a couple of words and string together letter sounds. When he does vocalize, it always sounds kind of breathy, like he has mild laryngitis. Actually, he might; we’re not sure how much damage may have been done to his vocal chords as a result of being on a ventilator for so long. But I digress…One of the words Nik can say with some degree of consistency now is “Mama.” It melts my heart every time he says it, despite the fact that he only ever says it with prompting. Like tonight.

Earlier this evening, Nik and I were playing and laughing together. I leaned over to kiss him on the forehead –just because I can. I always tell him how much I love him when I do that. I don’t know, maybe I’m making up for all those lost days of his infancy when I couldn’t just scoop him up in my arms and smother him with kisses for fear of dislodging tubes and intravenous lines or possibly upsetting his tiny and fragile body. All I know is showering my son with affection is an addiction I just can’t quit. I don’t want to until he forces me to stop!

After kissing his head and telling him I love him, I asked Nik if he could say “I love you, Mama.” He leaned down to his talker and hit the sequence of icons to tell me. I smiled, but I wanted more. I pushed. “No, baby, can you say it with your voice? With your mouth?” as I laid a finger on his lips. “Can you say, ‘Mama, I love you’?” I knew he wouldn’t or couldn’t but I had to try.

He looked at me and grinned and whispered his breathy, disjointed “Ma-ma” and then kissed me softly on the lips. I laughed and said “Do kisses mean ‘I love you’?” He tipped his hand in his own rendition of yes in sign language. “Can you say it again, baby?” I asked. He leaned toward me and put his face up to mine; I felt the whisper of an angel wing on my lip and heard him rasp “Ma-ma” once again.

In the instant that I blinked, he was whirling away from me toward his LeapPad books, humming the Spongebob Squarepants theme. Don’t ask.

A few hours later, not too long after I’d put Nik to bed and sat in the dark listening to his gentle snores, the telephone rang. It was my husband’s employer; Niksdad was asleep so I took a message. They had called to update Niksdad on the condition of one of his patients who had gone to the hospital the day before.

Shaking, I went upstairs and kissed my baby one more time and let the tears fall.

Somewhere tonight, another mother of another child with special needs kissed her boy for the last time. My heart aches for her pain.

Tonight, I am grateful for every kiss, every sigh and snuggle I have with my precious boy. Hug your children tight. Cherish every moment.

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It’s been roughly a year since my son’s sleep troubles have decreased dramatically. For years, yes, you read that right, years (five, in fact), my son would wake in some sort of heart-rending distress multiple times a night at roughly ninety-minute intervals and they lasted about 20-45 minutes each. To say those were brutal times would be a gross understatement.

It took a long time to finally debug what we think was the root cause; if I told you, you’d look at me like I had three heads. Even our son’s fantastic neurologist took a while before he believed we were right.  But, suddenly, the screaming, writhing bouts of self-injurious behavior…stopped.

The transition from those hellish years to sleeping through the night has not been without some bumps along the way and I’m not sure I believe we’ve fully crossed a threshold yet. But, here we are several months later and we have all finally retrained our bodies to sleep (mostly) through the night. Nik still has nights where he is up for a few hours in the middle of the night, but that’s more often the exception than the rule these days and usually only when something is brewing with his health.

I am extremely grateful that we now have a home health aide here to help us every night during the overnight hours. My husband works nights and I have to be able to function to get Nik ready for school and doctor’s appointments and to manage the day to running of our home which includes managing all aspects of Nik’s educational and medical plans and needs. It is a full-time job and my boss can be kind of, well, a bitch sometimes — especially when she doesn’t get enough sleep!

So we’ve been on cruise control for a while now and I was just starting to feel cocky. Until Super Storm Sandy came along; Nik’s sleep hasn’t been right since. He didn’t have any obvious anxiety from it, but his sleep has definitely suffered. Nik’s gone from sleeping up to nine hours straight through the night to either being awake for a few hours then going back to sleep or, worse, simply starting his day a mere small handful of hours after I’ve gone to sleep.The poor boy was so exhausted all day! I thought (ok, PRAYED) he would nap this afternoon so we could push his bedtime out a little later to help make the transition to Standard Time a little easier. Ha!

Nik came sooooo close to falling asleep on the sofa a few times and then would rebound suddenly. It was an ugly sight to see; the poor child was so dysregulated and exhausted that I described him to some friends on Facebook as being like a malfunctioning robot. At one point, immediately after he had eaten lunch, Nik got very upset because he couldn’t have his ice cream — which he always has after dinner. He started to fray around the edges and tell me he was hungry and asked me to make dinner. Then breakfast. Then lunch. Then dinner. Then ice cream NOW. Then the tears and frustration came followed by kisses and soothing from Mama. Then it all repeated in a seemingly endless loop. By late afternoon, I knew I had to get him out of the house to keep moving. We went to Target where he was…a complete angel.

As soon as we got home, the demands for dinner and ice cream began again in that anxious, perseverative kind of manner. He only ate half of his dinner before deciding he was done.  By six o’clock his body thought it was later (and he’d been up since the wee hours) and he was starting to fall asleep on the sofa for real this time. I helped him don his spiffy new pajamas, got all his myriad meds into him and brushed his teeth before heading upstairs.

Nik never actually made it upstairs under his own steam.

Halfway up the stairs, he stopped, turned around and put his arms up for me to carry him. “No, baby, you need to walk; we’re almost there,” I said. He looked at me and his lower lip quivered. He shook his head NO then sat in the middle of the staircase, laid his head on the stair above where he sat and closed his eyes. He’s such a little stinker. I convinced him to make it up to the top landing before I scooped him up and tossed him over my shoulder.

I think he may have been half asleep before his head even hit the pillow, but as I turned out the light and leaned over to kiss him on the forehead, he snuffled and raised his lips to mine. Resting a palm against his soft cheek, I smoothed his hair and whispered my goodnight. It’s a ritual I started when he was in the NICU so he wouldn’t ever feel alone in the middle of the night. I have whispered those same words every night since he was born. Even on the very rare occasions when I’m away from him, I make my husband put the phone to Nik’s ear and I softly say —

“God bless you and the angels keep you overnight, baby. I love you. I’ll meet you in Dreamland with Papa and I’ll be here when you wake. Good night, little bear.”

Today, tonight, I am grateful for sleep and the rituals surrounding it. For the progress my child has made in sleeping again and for the fact that he is here for me to kiss and snuggle each night. There were so very many scary days and nights in his early life when I thought we might not have this time together.

Sleep, my child, and peace attend thee,
All through the night
Guardian angels God will send thee,
All through the night

Soft the drowsy hours are creeping,
Hill and dale in slumber sleeping
I my loved ones’ watch am keeping,
All through the night

Angels watching, e’er around thee,
All through the night
Midnight slumber close surround thee,
All through the night

 Soft the drowsy hours are creeping,
Hill and dale in slumber sleeping
I my loved ones’ watch am keeping,
All through the night

All Through the Night ~ a Welsh Lullaby often associated with Christmas

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Today, I give thanks for peace.

Not peace in the sense of wars and cease fires, disarmament or global resolution – though that would be nice. Nor am I talking about that deep and abiding sense of inner peace – that all-encompassing knowledge that all is as it should be in one’s world and the path forward can be visualized if not actually seen. My world, my daily life, is far from that predictable!

The peace of which I speak is simpler, more fleeting.

It’s the lingering minutes of quiet after my son has fallen asleep on the sofa while my husband is sleeping before he goes to work. That rare window when the cats are asleep and the only sound I hear in the house is the gentle trickle of water from their fountain. Or the subtle creaks and groans of the windows as the wind picks up outside.

The peace of knowing I can drink a cup of tea while it’s still hot. Or go to the bathroom without a visit from my son – or one of the cats.

I give thanks for the peace which settles into my body– no matter for how short a time – as it relaxes, relieved of its state of constant vigil. A reprieve from the coiled tension required to spring into action to keep my son out of harm’s way due to his utter lack of a sense of danger. Peace even to my ears – respite from the perseverative demands of “go car mama” or “pretend doctor.” The constant refrains of  songs from Mary Poppins, She’ll be Coming Around the Mountain, or the days of the week songs in all their various renditions available on YouTube.


Those rare moments of quiet, when the tension drains from my body and my mind slows from its constant whirl. Those infrequent times when I can put aside the constant worries about my son’s fragile health, about his uncertain future. About our finances and our future plans. When I can shut out the world for just long enough to really catch my breath.

In those rare moments, I find I can breathe more fully, more consciously.

Deep breaths in… Slow, cleansing breaths out.

In so doing, I gently refill that well within me which, far too often, is on the verge of running dry.

In the quiet, I breathe in peace.

Blessed, blessed peace.

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[Ed. Note: November is National Blog Post Month (aka NaBloPoMo; click to learn more about it). While I hadn’t set out to return to my blog with any specific plan, I stumbled onto another monthly blogging theme – Thirty Days of Thanks. Since November is the celebration of the Thanksgiving holiday in the U.S., I decided this might be a nice way to jump back into my blog and reconnect with you, the faithful readers who keep checking back and dusting off the screen. I’m thankful for you, too.]

In the midst of a tough day, there are these golden moments for which I am so very thankful…

Nik asked me to come play with him. It’s the first time, ever, that I can recall him using actual words to make such a specific request of me. He stood at the gate in the playroom, resting his device on top; “Sit, Mama, play” he implored with his whole body, making full eye contact. Both my child and my heart would brook no resistance. For nearly twenty minutes, we drew scribbles, shapes and letters on the iPad as we sat on the sofa, Nik’s warm little body leaning into mine as we wrote and made sounds together.

It took coaxing and more than a little prompting at first, but we took turns drawing the lines to complete the letters.

“Nik, draw a line down, baby.” With a little assistance, he did. Then I drew a line down. “Can you draw the line across to make the letter A?” With a sure hand, Nik dragged the stylus across the screen. He looked at me with a questioning look and intoned “Aaaa” to tell me he knew we had just made a capital A. Repeating the process for the letter B, I had Nik draw the line down then I drew the “bumps.” Ever the perfectionist, when my marking was bigger and there was a gap at the bottom of the letter, Nik tried to lengthen his first line with interesting results.

“Great job, buddy! What letter did we make?” His eyes lit up as he said “Buh” and shook his hand in an approximation of the sign for the letter B. And on we continued, sometimes hand-over-hand for the harder, curved letters, all the way to G.

Knowing he’d reached his limit, I let Nik take the lead. Thinking he would take the iPad away from me and turn on his music, I was surprised when he thrust the stylus back into my hand. “What do you want, love?” I smiled. He tapped the blank screen then signed “Please.”  “Do you want mama to draw shapes, numbers, or letters?”

I waited while he contorted his sweet little face with a mighty effort. My heart was about to shatter with shared frustration as I watched him, knowing he was trying so hard to form a sound. Just as I was about to tell him to use his “talker,” he let out a series of short, breathy sounds which, I swear, sounded like he said “ABC” as one word… a la Big Bird’s song. My eyes may or may not have gone a little wide and gotten slightly misty when I asked him, “Did you say A-B-C, baby?” He signed “please” again.

After a few rounds of drawing ABC’s and singing along, it was clear; Nik was spent and needed a break so he got up and started wandering in the playroom. As he walked, I took the iPad and wrote the word hammer.

We’ve been struggling for a very long time to figure out just what, if any level of reading comprehension Nik has. His cognitive and communication disabilities make it nearly impossible to test with any reliable accuracy. We know he can spell and decode words, but we can’t quite tell if he understands the words he is reading unless they are paired with a spoken word. Because of his disabilities, Nik relies heavily on auditory reinforcement – pairing the sounds with the visuals.

I held up the iPad and showed Nik the word. “Can you find this, sweetie?”  He approached the iPad and traced his finger across the word, much as an early reader does when keeping their place in a sentence on a page. I knew he was decoding it –sounding it out in his head. I waited as he did it again. He cocked his head to the side. “Where is it, love?” I prompted. He looked around the room a bit before he spotted it. Nik walked right over to the reflex hammer from his doctor kit and brought it to me!

Next, I wrote vest. Seeing, decoding, understanding; Nik brought me his swim vest. Feeling giddy, I wrote 3 socks; it was a long-shot. Nik struggles with numbers and counting so I wasn’t sure if had set him up for failure and frustration.  There was two pair of socks on the floor by the laundry closet door.  Again, the finger, the decoding, the head tilt…and off he went toward the socks. Nik immediately picked up two socks; it made sense as we sing about how “shoes and socks will always come in twos.” He hesitated.

“How many?” I prompted. He looked at me for a moment then bent over and picked up… one.more.sock.  He brought me exactly three socks. Not four. THREE.

And on this went for a few more words.  I added some complexity—

“Get orange hat.” He got it.

“Put hat on.” He did… on my head.  (Smart alec kid! Who says kids with autism don’t have a sense of humor?)

I admit, “Put hat in blue bucket” may have been pushing the envelope a bit. He struggled with that one.  But…

NIK READ. Like, really, truly read! And he understood what he read!  I didn’t speak the words at all and gave him NO help other than asking “How many?” for the socks.


Signaling the end of our play time, Nik walked to where I sat on the sofa, took the iPad out of my hands and turned on his music. Without so much as a backward glance my way, he crossed the room, turned the bucket over and climbed on top to sit by the window.  The message was loud and clear – “All done, Mama.”

Somehow, I think we’ve turned a page. And, oh, my little bear, this is just the beginning of an exciting new chapter.

“The journey of a thousand miles begins with a single step.” ~ Lao Tzu

“I am unwritten, can’t read my mind, I’m undefined
I’m just beginning, the pen’s in my hand, ending unplanned…”

“Unwritten” (N. Bedingfield, D. Brisebois & W. Rodriguez)

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For whatever reason, I’ve been in a funk this morning, feeling like I don’t know where my life is headed or who I am anymore. Again.

You know, all the existential stuff which creeps in when your child is having a rough time and people around you seem to be zooming on with their lives.  (Yeah, yeah, I know…the grass is always greener in our neighbor’s yard, right?)

It was no coincidence, I think, that I got an email telling me I had videos on Google Video that needed to be migrated over to YouTube.  So, I did what any self-respecting person with too much to do and not enough time to get it all done would do…I spent some time strolling down memory lane.

Most of the videos are roughly five years old and capture some milestones we’ve long taken for granted. Watching them this morning, however, took me right back to the days when I knew, without a doubt, my purpose in this life. No accidents, eh?

I thought I would share one in particular which newer readers (and friends) may have never seen. I had it on my blog when I was on the blogger platform several years ago. It’s a video love letter to Nikolas from Niksdad and me.

If you are sentimental, you might want to have a tissue ready.

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