Feeds:
Posts
Comments

Posts Tagged ‘progress’

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.

Read Full Post »

IMG_4637

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.

Read Full Post »

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!”

Read Full Post »

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”

Read Full Post »

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.

Read Full Post »

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?

Read Full Post »

I may regret this later…

 

 

 

Image

Read Full Post »

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

Read Full Post »

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.

Read Full Post »

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

Read Full Post »

Older Posts »

Follow

Get every new post delivered to your Inbox.

Join 478 other followers