Doing the Write Thing

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

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

Waiting for the bus this morning:

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

He knows it is his.

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

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

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

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

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

 ******************************

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

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Today You Are Nine

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.

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A Month of Gratitude – Day Fourteen: Little Big Things

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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A Month of Gratitude – Day Eight: The recorder

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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A Month of Gratitude – Day Two: A new chapter

[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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Monkeying around

Nik’s school is on a field trip today to see this movie:

Last night, I sat with him to show him the movie trailer on his iPad to prepare him that his school day would be different from his usual routine. As the video began to play, he snuggled against me and put his head on my chest. *cue lump in throat and misty eyes*

When the trailer finished, Nik reached for his speech device and promptly spelled chimp…

T-I-M-P

The plural? CHIPS, of course.

I almost died from the cuteness.

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Twisted

So, um, yeah…about this Autism Awareness Month? I do have something to write about how my local Home Depot has completely embraced not only awareness in the month of April, but, well…I’ll tease you and tell you you’ll have to wait another day for that post. It’s worth the wait, I promise!

I was all set to post pictures and write pithy verbiage much sooner than this, but, well… Nik, apparently, had other ideas.  More specifically, his brain had other ideas. It began misfiring a few weeks ago with some breakthrough seizure activity. We upped his medication and thought we had it under control.  We were mistaken.

The past couple of weeks we’ve been not only monitoring Nik’s seizure activity, but increasing meds again and watching the seizures (or seizure-like activity) transform. We’ve had some unplanned phone calls and office visits with our fabulous neurologist and we have a plan in place.  It’s a short-term plan, but it’s a plan; it includes another ambulatory 24 hour electroencephalogram (EEG) in the immediate future. We need to know if we’re dealing with increased seizure activity or a severe movement disorder.  Think tics which occur at such a rapid and constant rate that they interfere with nearly all functioning and definitely with Nik’s safety and you’ll have an idea of what we’ve been dealing with.

Yesterday morning, we watched Nik lose consciousness for the first time in a long time. Then he napped for more than two hours. We’re pretty darn sure that wasn’t just a tic. So, we’re looking at options for short-term treatment until the EEG. Good times, my friends. Good times.

In the meantime, this week also threw us another curve ball in the form of Nik’s hearing; his hearing is getting worse and he now needs hearing aids.  Those will be fitted in just a couple of weeks.  That news was a bit of a kick in the gut at first, but I’m getting more used to the idea; I just hope Nik will cooperate with wearing them because we’re running out of options. The issue is not volume so much as loss at certain frequencies which fall right in the ranges necessary for speech comprehension.

This new knowledge about Nik’s hearing explains several things with which Nik has struggled during the school year— including attention, following directions, and reading skills. It’s difficult to know what is being asked of you if you can’t understand the words being said.  This change opens up a whole host of questions about what additional supports Nik needs that he is not currently receiving and whether the current placement is best for him. We’re left wondering how to deal with the significant vision impairment and hearing loss and autism and cerebral palsy in a way which allows Nik to play to his strengths versus remediation of weaknesses and in an environment which doesn’t become isolating.

We have no answers yet… just a lot of really good questions. I’m sure I’ll write more about this as it unfolds.

Our biggest goals and strongest desires for Nik are that he learns to read and to communicate more independently. I feel that if we can give him those skills, the rest will either come or he will find ways to compensate. Without those skills, his shot at independence is incredibly limited.

So, on the heels of a very emotionally difficult week (which included a scare about a broken iPad and a 2 hour trip to the nearest Apple store) —and because I may be just a smidgen of a Pollyanna, I am holding on tightly to this little nugget I shared on my Facebook page tonight:

OMG OMG OMG!!! I completely forgot to share this news:

Nik READ the word PRETZEL on a sign yesterday. I was like, “Sweetie, where did you see that word?” He pointed right to it on the sign. Then he promptly asked for ice cream. (We were at Rita’s so it wasn’t an odd request.)

HE.READ.

Yin and Yang. Yin and Yang. The journey continues.

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Sometimes it hurts to breathe

And so, without a backward glance, my heart scrambled up the steps of the big yellow bus. His excitement at this new development —this milestone years in the making— was so great, I had to make him stop and turn around to kiss me goodbye. It is no accident, then, that the heavens opened and the sky began to pour down upon me as the bus pulled away from the curb. I watched until the bus was out of sight, letting the rain mingle with my tears.

No one told me putting on my own oxygen mask would hurt so much.

Mother sits down at the table
So many things she’d like to do
Spend more time out in the garden
Now she can get those books read too.

She’s had 18 years to get ready for this day
She should be past the tears, she cries some anyway.

Oh, oh letting go
There’s nothing in the way now,
Oh letting go, there’s room enough to fly
And even though, she’s spent her whole life waiting,
It’s never easy letting go.

“Letting Go” ~ Suzy Bogguss

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One more thing…

I must admit, for years I thought all the hype about Apple products was just that…hype. I didn’t get the appeal, certainly not for a price point I really couldn’t justify.  Sure, I remember my sister’s first MAC and the goofy little icons and the weird mouse-thingy. I thought it was all kind of ridiculous and pretentious.  I was a PC gal through and through.  I sneered when my other sister became an early adopter of all things Apple —the iPhone, the iPod, etc. It became a badge of honor to me that I resisted the pull.

Then, just a little less than a year ago, some friends —with the generous assistance and kindness of some strangers— made it possible for my son to receive an iPad.  We had no idea whether he would take to it or what it might do for him. After all, my nonverbal, multiply disabled son had recently been diagnosed as mentally retarded (those were the words of the doctor) and we were told to prepare for a lifetime of care giving and not much else. We didn’t believe in the diagnosis and just knew we had to show the doctors that there was —there IS— a light burning fierce and bright within our boy.

Because of all the hype, we had borrowed an iPad several months prior, but Nik didn’t really get it. He struggled with the touch-screen; his cerebral palsy made it hard for him to control his hand movements. Isolating finger movements for tapping or making single strokes or swipes required for some of the simple apps we tried was a pipe dream.  We were reluctant to try again, fearful that the good will and generosity being extended to us would be wasted.

Nik’s new iPad arrived just in time for Thanksgiving —and shortly before his seventh birthday. We already knew that Nik loved letters. In fact, he is obsessed with them!  Not having a plan or any idea as to what might be good to try, we relied on the generosity of still more strangers —the fantastic people associated with  Moms With Apps— who donated free apps for Nik to try.

The advent of Nik’s Vantage Lite speech generating device in our lives, roughly two years ago, brought dramatic change; it gave Nik the power to communicate with us in ways that did not involve screaming, throwing, or slamming his head on the floor to express frustration. To date, no other technology has provided that for Nik. Even the iPad, with all its myriad communication apps, does not give Nik the ability to communicate in the manner which works for him. However, I do not exaggerate when I say the gift of Nik’s iPad changed our lives forever.

While the iPad cannot replace Nik’s communication device (yet), it has opened up the world to my boy.  It’s not about the technology, per se, but what is being done with it and the ways in which children like Nik can discover and be motivated to push themselves so far beyond what others have deemed his ability level. In the time Nik’s had his iPad, he’s taught himself so many things and has opened the eyes of those around him to the intelligence he holds in his wordless self.

Once written off as mentally retarded and not very teachable, Nik is now impressing his teacher and other professionals with his spelling abilities, his problem-solving skills and his manual dexterity. We are seeing cross-over and generalization of skills beyond the use of the iPad.

My child, who could not point his finger a year ago, can now actively show me what he wants me to look at even if he doesn’t have the voice or the words to describe it.  He can find music to soothe himself, videos to entertain or teach himself  new things —his interests run the gamut from ABC’s to DIY home repairs. (I told Niksdad to lock up his power tools, just in case!) It has opened up a world of exposure to peer interactions which are not otherwise available to my son —an only child. Video modeling at its finest.

Do I think it’s a coincidence that Nik has recently begin to approach children his own age for play and interaction —regardless of how clumsy the attempts may be? No, I do not.

Do I think the advent of the iPad means Nik will suddenly be able to live independently or go to college? Perhaps, perhaps not. But I do know that it’s made the idea that it may even be possible a part of the conversation. For that alone, you can call me a Fan Girl.

Steve Jobs was a visionary, an out-of-the-box thinker and a remarkable leader. I think his legacy will not be about technological innovation as much as his transformation of the way we connect to one another, the ways in which we open up new horizons for both those who would boldly step into the future as well as those for whom, perhaps, there was once no future.

Rest in peace, Mr. Jobs. You will not be forgotten here.

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The summer of miracles

Oh.Em.Gee! He's standing on the sand. Barefoot. Not screaming or crying!

The boy LOVES his water!

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