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Posts Tagged ‘good stuff’

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

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

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

I went to the park with Daddy this morning.

Will Daddy take me to the park?

I like going to the park with Daddy.

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

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

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

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

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

“H-O-L-D bag.”

Well played, son. Well played.

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

“Eggs, eggs, eggs, eggs…”

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

“Eggs, eggs, eggs, eggs…”

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

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

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

“Eat, B-”

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

“…A-C-O-N. Eat bacon. Eat bacon.”

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

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

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

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

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

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

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

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So, this happened recently:

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

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

And then my heart exploded and my face leaked everywhere.

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

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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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[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.

He.Read.

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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He really is a badass little dude!

Badass. Total.Badass.

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I’m a bit behind-times here this week. Nik has gone back to school after a long and challenging (for all of us, but especially so for him) break.  However, he has also come down with either a sinus infection or an ear infection. Or both; we find out when we see the doctor later today.

To counter the elevated threat stress levels today, here’s something which makes me smile no matter how low I am feeling.  I hope it brings you joy, too.

A very belated happy holidays from our home to yours! May 2012 bring you a wealth of good things, good people, good feelings.

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Um, hi.  Yeah, I know I’ve been AWOL for a while.  I’m not even going to try to relate everything that’s gone on in our lives since my last post.  Well, okay, for the benefit of the fourteen faithful readers who keep checking back for posts, I’ll try.

  • Nik’s been making amazing progress with his “talker” (speech device).
  • Nik’s made tremendous gains in eating “real” food.  Turkey sandwiches, chicken, spinach (!!) and the like.
  • We’ve hit upon something we think might be at the root of  Nik’s gawdawful gastric troubles.  But it’s complicated and difficult to explain.  It’s still a work-in-progress so I’m not ready to write about it yet, sorry.  If we’re right, it just might help us all sleep again!
  • Nik’s been battling rampant ear infections…again.  On and off since Memorial Day.  We see the ENT (again!) tomorrow to discuss removal of yet another tube and whether or not to replace them…again.
  • Nik’s learning to play in my sister’s pool without his swim vest.  As long as he has his arm floats, he does just fine. He can now doggie paddle the length of the pool a couple of times over. The boy adores the water, for sure! Nearly every day the first words out of his talker are “Go swimming. Cool.”  Yes, we’ve figured it out; he really does say cool when he means pool.  Sometimes he’ll even voice the “puh” before touching the button for cool. It’s adorable. And annoying.  But mostly adorable.
  • Sadly, the relationship between Nik’s ear infections and lots of swimming? Pretty much a one-to-one correlation. Which, no surprise, also correlates directly to broken sleep. GAH! With this latest heat wave, we’re willing to forego some sleep in order to satisfy the boy’s pool cravings.
  • And, last but most definitely not least, Nik has returned to school.  Today was his first (part) day.  This topic merits a separate post for so many reasons.  For now, though, suffice to say it’s not a perfect situation but it’s so much better than we could have anticipated.  Where we once felt sick and hopeless about the idea of putting Nik back in school, there’s now a glimmer of hope.  It may be elusive— like that pot of gold at the end of the rainbow— but we’re going to chase after it with all we’ve got.

We’re ready, Nik’s ready.  I hope school’s ready for him!

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