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Posts Tagged ‘milestones’

On our way to school yesterday—

NIK: One, two.
ME: I don’t understand; can you use your words to tell me more?
NIK: I.want.candy.one.two.please.
ME: Thank you! Here you go.

I hand Nik two tic tac candies.

It’s a game we play each morning. It started years ago as a way of encouraging counting skills. Clearly, we are beyond that now and we have modified it over time. Now, I use this same exchange to work on language skills and, sometimes, concepts.

NIK: Three, four.
ME: I understand, but you just had two. You need to wait.
NIK: Three, four, please.
ME: Tell you what, buddy, you may have three and four after we pass the fire station.

As I hear the words come from my mouth, it occurs to me—I don’t know if Nik really understands. We don’t exactly narrate our daily travels anymore and we don’t know any firefighters. Other than a character in a story, I’m not sure Nik’s really been exposed to the idea of a fire station. I mean, we drive past the large brick edifice multiple times a day—on the way to school, on the way home, when we go to the store, the park, the pool.  It is a landmark known to everyone because of both its importance and its location. We take it for granted as simply another part of the scenery.

NIK: Three, four. Now, please, Mama.
ME: No, sweetie. You need to wait until we get to the fire station. Do you know where that is?

I see Nik sign “yes” in the mirror, but I’m not convinced he really knows.

As we approach the intersection, the light turns red; I ask Nik to point to the fire station. He points, vaguely, to the right side of the car; the fire station is on the left. Realizing he doesn’t know what I’m talking about, my heart lurches a little.

In that instant, it becomes vitally important to me that my son understands what the fire house is and where it is— as if it’s a confirmation that he does, indeed, have things in common with his typical peers. After all, all boys love fire houses and fire engines, right? I sigh, wistfully, and remind myself that it’s okay if he doesn’t. Maybe.

ME: (clearly refusing to give up as I point to the fire house on the opposite corner) Nik, look. That’s the fire station. It’s the house where the fire engines live. Can you see it, buddy?
NIK: Fire engine.house. Fire engine house. Inside.
ME: Oh, sweetie, we can’t go inside. We have to go to school.

The light changes and we begin to drive. I tell myself it’s a start; we can keep working on it.

As we drive past the fire station, I hear some rapid vocalizations from Nik followed by a flurry of beeps from his device.

NIK: Fire engine. Sit. Fire engine. Sit.Later.
ME: Can you use a sentence so I understand what you mean, sweetie?
NIK:  I.want.sit.fire.engine. Today. I want sit fire engine today, please, Mama.

And that, my friends, is how it started to rain inside my car, forcing this mama to drive to school without being able to see a thing.  It is also why I am now on a mission to take my boy to the fire station as soon as possible.

Nik during one of his many hospital stays. This was his first birthday.

Nik during one of his many hospital stays. This was his first birthday.

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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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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.

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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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Yesterday was a pretty tough day for my son. He’d been looking forward to the country-wide Special Olympics bowling event for weeks. His excitement was mostly about riding the school bus and seeing “friends” with whom he could play his wordless hand-clapping game. His expectations and the reality were so very, very far apart.

Don’t get me wrong; we love Special Olympics and all that it has opened up for Nikolas. It gives him an opportunity to learn new skills, to experience new situations, and to practice some of the very important listening and participation skills which challenge him greatly on a daily basis. I appreciate that he can participate in whatever manner meets his needs dictated by his physical limitations in both motor and visual processing and coordination. Frankly, I also love that Nik is often not the most obviously impaired child present – as it so often feels when we are at the park or even within Nik’s own wonderful classroom setting.

So, why was it such a tough day, you ask? Simple, really…

Take approximately 200 kids, each with an accompanying teacher, paraprofessional and/or nurse, add a family member for every other kid present, the staff and volunteers from Special Olympics, the requisite number of bus drivers to transport those children and school professionals from four different school districts and pack them all into a 32-lane bowling alley for three and a half hours.  I don’t have many sensory issues of my own, nor do I have any impairments which make it exceptionally challenging for me to process visual and auditory input like Nik does, but I can tell you that my brain was still buzzing from the tension more than six hours after the event was over.

Nik gets ready to bowl

Nik gets ready to bowl with the help of a ramp and his friends.

Nik didn’t even make it through the first of two full games before he was spent.  He went from a bubbly and exuberant boy when they first started, to a child who could not even pull himself together after the first five frames of the first game. He simply shut down. DONE. No amount of coaxing or cajoling would work. In fact, it made it worse.

If I had the benefit of today’s hindsight yesterday, I would have simply taken Nik home. It was shades of our Special Olympics soccer experience of a year ago when Nik was so utterly overwhelmed by the sheer volume – both in terms of people and noise, that he could do no more than throw himself on the ground and wail his outrage and frustration. Yesterday was deceptive in that he did not throw himself on the ground, but he made it crystal clear he was not going to bowl any more. Instead, we spent hours walking up and down and taking some breaks to sit and drink some soup or nibble at his bagel.

Nik has, clearly, had enough fun for one morning!

Nik has, clearly, had enough fun for one morning!

Given how crummy he feels right now between his infected ears and sore throat? It’s a miracle he didn’t throw himself on the ground and weep and rail at the world; I’m not so sure I wouldn’t have in his situation. Progress.

But at what cost? I watched as my beautiful boy flitted from place to place like a hummingbird –unable to fully alight and be comfortable or content for more than a flash before the compulsion to move on took hold. We walked and wandered. We tried to eat lunch and sing songs in the semi-quiet rooms near the back of the bowling alley. Still, it was all too much. I could see the perseverations rising like flood waters and I felt helpless to figure out where and how to draw the line. I wanted to hang in until the end so that Nik could get the ribbon for which he had worked so damn hard. He may not have finished his event, but he gave it his all and I was proud of him. I wanted him to hear the crowd celebrate his achievement, too.

As the awards were being given out, Nik’s para, Ms. M, and I realized that something was wrong; Nik’s entire group had been given their medals and ribbons and were making their way toward their school groups. There we stood, confused.  I know Nik didn’t understand the ramifications of what was happening, but Ms. M and I both did. I felt hot tears prick my eyelids. Ms. M adores Nik like he was her own son; she asked me to stay with Nik and strode off like a mama bear on a mission.

Ms. M returned triumphant but disgruntled. When Nik hadn’t finished his first game, a volunteer removed his name from the roster. On paper, it was as if my boy had never shown up, had never given every ounce of heart and energy he had. As Nik sat slumped against my shoulder and my heart was, figuratively speaking, on the floor wailing in frustration and outrage, Ms. M. simply made it right. (It’s one of very many reasons I am so grateful she is working with Nik!)

When the announcer called Nik up to get his ribbon, Nik was all smiles and fist-bumps with the police officer who gave him his ribbon. I, on the other hand was all sniffles and quiet tears. The oversight in such a setting where it’s all about inclusion, left me rattled.

My boy works so hard to make his way in a world which neither understands him nor fully embraces him for how he is right here, right now. As far as I’m concerned, he deserves a ribbon every day.

Emotional crisis averted, we made our way to the opposite end of the bowling alley to find Nik’s teacher and the three classmates who had participated in a different division. It was like watching a family reunion; Nik suddenly sprang to life and bubbled over with joy at seeing his friends.  They were also over stimulated and tired from the long morning. One of the boys can get very physical when he is in that state and I worried when Nik grabbed his hands to start to clap with him. I admonished Nik to use his “words” (his speech device) to ask the boy if he wanted to clap.

The way Nik spelled everything out was as if it were one long, breathless request. “Marcusclapplease.” Marcus has always made me slightly uncomfortable because he is so much older and bigger than Nik and has no concept of personal space. He also has a very flat affect so it’s hard to tell what he’s feeling or thinking at any moment. I watched, somewhat leery, as he put his hands up for Nik to clap.

Marcus pulled his hands away very suddenly and mumbled “clap done.” Nik persisted and Marcus tensed. I knew Ms. M and Ms. C (the teacher) were watching and ready to intervene, yet they didn’t seem at all anxious about what Marcus might do. Marcus reached out and put both of his hands on Nik’s shoulders and slowly pulled him to his chest. I held my breath as I watched in awe; Marcus slowly bent his head down and, with a tenderness I could not have imagined he could express, kissed the top of Nik’s head in the most affectionate and brotherly gesture I have ever seen. So simple, yet so profound.

The sting of the three-plus difficult hours which had come before this moment suddenly melted away. This…connection; this was the real prize for my son who gives his all every single day. This was what he came for.

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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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