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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Moving from awareness to acceptance

Did you know…April is Autism Awareness Month? If you don’t live under a rock, you’ve likely seen the latest figures released by the CDC last week regarding the rise in the rate of autism in the United States.  If you missed it, here’s the bird’s-eye view:

1 in 88 children  ~ 1 in 54 boys  ~ 1 in 252 girls

I haven’t yet had a chance to write my own post about what we are doing for Autism Awareness Month and World Autism Awareness Day. ( Read last year’s post here.), but I wanted to make sure I shared these posts from some of my very dear friends:

Mom-NOS: “The blue light reminds everyone who sees it that people with autism are…”
And as he stared out into the blue, he answered softly in a voice that came from a million miles away: “Awesome.”
(You can read the full post here.)

Jess: “Awareness is not the goal. It never has been. But it is the foundation without which no other change can happen.”
(You can read the full post here.)

Did you know that April is also the Month of the Military Child? Our military families are not immune to the effects of living with and loving family members with autism. In fact, they need our help.  Please, take the time to read the words of my friend, Rachel, who has been fighting tirelessly to change the inequities in the military health care system with regards to autism services.

In a post featured by Autism Speaks, Rachel writes: “As a military spouse and mother to a child with autism, I’m here to spread some multidimensional awareness by exploring how these two pieces of the puzzle fit together, or rather how they do not.”
(Read the full post here.  It includes information on the Caring for Military Children with Autism Act and how to contact your Congressional delegate(s) to ask for their support of this important legislation.)

I hope you will subscribe to the posts from The Thinking Person’s Guide to Autism. All month long, TPGA is featuring “Slice of Life” posts from Autistic people of all ages. Because, awareness is great but ACCEPTANCE is so much more important.

And, finally, I’d like to encourage you to visit the Autistic Self Advocacy Network.  The name speaks for itself as the organization empowers Autistics to speak for themselves.

If you don’t live with autism, it may be hard to understand why it is so important to listen to the voices of those who actually are autistic. These are the voices which will help us shape the future for our children, open the minds (and doors!) of employers, educators, business leaders and politicians about what is possible for so many people who are otherwise marginalized because of myriad manifestations of autism. These are the voices which can help us establish more and better supports for adults with autism once they leave the school system.

Their voices can help shed a light on the tremendous potential within each person regardless of how autism affects them. The potential within each person may not be the same, but the potential to be so much more than what meets the eye is far greater than you might imagine.

Only through dispelling the myths and the fears, through support and acceptance —true acceptance, can we empower each autistic person to meet their potential.

So, um, I guess THAT is what we’ll be doing for the month —and always; helping our son find his “voice” and meet his potential.

What's not to love?!

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Hidden meaning

Nik’s latest thing he likes to do is make patterns on the inside back door with his magnetic letters. He does it in a very deliberate and methodical fashion, humming the letter sounds he can make as he goes. I watch, fascinated, trying to figure out if there is a rhyme or reason.  There is, I can tell, but it may not always be the same.

Some of the elements remain constant— his desire to group letters together or to alternate the capital and lower case letters.  Sometimes, there are linear pairs of letters marching up and down the insides of the door frame.  Those patterns are usually pretty distinct and I can see that, perhaps, they reflect a need for order and control.

Others?  Crooked lines and clusters of seemingly random groupings of letters turned in all directions —some of them aren’t even “complete” in that they don’t  contain all of the same letter. For instance, in a grouping with the letter S, Nik may have them arranged in some pattern either by direction or size.  But there will be a renegade S on the periphery of another group…slightly out of place. Or is it?

Still other times? Words. Hidden within the clusters and the seeming randomness there is meaning.  So much like my boy himself.

Word find challenge: ASK, CAP, JOB

Oh, to know for a fraction of a second what goes on inside his beautiful mind…

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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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It’s 9:01 AM and I need a drink

The routine is the same each day. Nik precedes me to the front door by mere steps and waits while I pick up his backpack.  He carries his speech device, which weighs just under ten percent of his entire body weight, so I take the backpack.  He prances with unfettered joy as he waits for me to unlock the door; he loves going to school. I allow him to walk to the car ahead of me where he waits by the passenger door in the back.  It’s a routine so deeply ingrained that we don’t even think about it.

Chalk it up to the sensory aftermath of Irene, or the seizure medications which are playing tricks with his brain and body. Blame it on the moon and stars, the planetary alignment. For whatever reason, our routine is off today. Nik darts past me as I grab his device off the dining room table. He is eager to go to school; the new year has started and he already adores his teacher. Today is gym day —his favorite activity. Not surprising for my boy of perpetual motion and boundless energy.

8:09 AM:
I reach the door at the same time he does.  As I reach for my keys, I realize I don’t have the backpack. In the instant it takes to turn and pick it up, the door is opened and Nik darts out.  “Wait for Mama, Baby; I’ve got to lock the door. I’ll be right there; go stand by the car.”  The same script we run every single day. I’m moving as fast as I can so I can help Nik get into his car seat; if I dawdle, he will climb into the front seat and start playing with the radio and the gear shift.  Not such a big deal, but today we are running a smidge late and I don’t relish the added hassle.

Quickly, I pull the door closed behind me and look to where Nik is standing by the back door of the car.  The emptiness of the space takes a moment to sink in.  I scan the car to see if he’s already inside; it’s empty and the doors are still closed. “Nikolas? Where are you, baby?” I call in a voice I think I recognize; it’ is slightly shriller than normal. I turn and scan down the street; Nik knows his Nanny and Granddaddy live just six doors down.

There is no sign of him.

8:10 AM:
Instantaneously, I am engulfed —mind, body and soul— by a blinding, breath-stealing panic.  I begin to scream in earnest, “NIKOLAS! NIKOLAS ERIK!! Where are you, Baby?”

Silence.

I throw everything I am holding on the ground.  The contents of my purse tumble out; the water bottle from Nik’s backpack goes rolling to the end of the driveway. I don’t spare a thought for the speech device as it crashes to the ground; it costs more than my car is worth, but I don’t think twice.

Gasping, screaming, my heart racing and my stomach clenching.  “NIKOLAS!!! Baby, come here, baby!” NIKOLAS!!!!!”

The neighbors are not home so I know he didn’t run to their house; they would know to bring him to me anyway. In a sickening instant, I think about the hurricane-swollen creek behind our house.  Nik is obsessed with water and he is fast enough to have gotten around the quad of townhouses we live in.  Sobbing hysterically, I am still screaming his name as I take off running to the side of the house.  My throat is tight and raw and I can’t see.

A loud crash behind me captures my attention, stopping me in my tracks. I turn to see that our garage door is open about a foot.  Oh my God, the motorcycle! I race toward the garage, screaming his name.  I don’t expect him to answer, but I cannot stop myself just the same.  I hit my knees on the black top and look under the door.

I can’t see him.

The sudden flood of possible permutations of lethal dangers in the garage fills my lungs, displacing all air. I cannot breathe.  Time simultaneously stands still —allowing all those possibilities to cross my mind—and accelerates; each moment he is missing feels like it’s been ten minutes long.

Jumping to my feet, I punch in the code for the door opener. My hands are shaking so badly I can’t get it right.  I am too large to squeeze under the small opening under the door. I fly to my car and open the door just enough to reach the remote opener on the visor.  As I hit the button, I pray Nik is not near the door when it starts moving.  He is not.

As the door lifts enough for me to get under, my eyes take a moment to adjust to the light. I can see my husband’s motorcycle still standing where it should be.  My son is not pinned beneath it as I feared. I look toward the plethora of lethal garden chemicals and dangerously sharp implements he sees his daddy use outside on a regular basis. He is nowhere near them, nowhere in sight.

Panic and fear are rising with the bile in my throat.

The water! If he’s gone there I may be too late.  As I turn to leave the garage, I bargain with God to allow my too-large body to move quickly enough to keep my baby safe.  If I run through the house I might reach the back yard before Nik can get into serious danger.

Another crash, not as loud as the first, draws my attention further back inside the garage—toward the fire door leading into the house. It is locked with two deadbolts so I know he cannot get into the house. I hear a giggle from around a corner. I look beyond the metal storage shelving, afraid of what I might find.

There, on the concrete, sits my boy.

Oblivious to both the dangers around him and my abject panic, he is happily playing with one of the few things in the garage which can do him no serious harm if he were able to get it open…a can of cooking spray.  I suppose he likes the feel of the cool can in his hands, the sound of the contents shaking inside. The bright red cap. Thankfully, he doesn’t have the grip strength to remove the cap—the color of which must be what caught his attention.

I didn’t think it was possible to shake any more than I am or to lose my already-absent ability to breathe; it is unavoidable.  I hit my knees and scoop him into my arms, sobbing and kissing his little face, his soft brown hair.  “Baby, don’t ever scare Mama like that again!”

I know he doesn’t fully understand; to him, it was just an adventure.  He was going about his routine just like normal when —Ooh! Shiny!— there it was, a space just begging him to slip through into the darkness to explore.

8:17 AM:
I carry him to the car and strap him into his seat, thankful for the familiarity of the routine which doesn’t require thought or sight; I have neither as I am now sobbing and gasping.  Shaking uncontrollably from the adrenaline surging through my body.  I collapse against the car door as I close it, closing him safely inside.  Minutes later, I gather the items strewn about the driveway and we head to school.

As I drive, on autopilot, Nik chatters happily in the back seat about “gym, ABC, Ms. Margaret, school.”

8:30 AM:
I hand Nik off to his para and tell her simply that we are late because Nik ran off this morning. I give Nik extra hugs and kisses and send him off.

8:32 AM:
I sit in my car in the school parking lot and breakdown.

It could have been worse. So.Much.Worse. The knowledge of which has changed my world.  Irrevocably.

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ill wind blowing

the change comes
fierce and sudden
a raging tornado
in the midst of a placid night
we are sucked into its vortex

the unholy violence of
the blows he rains upon his body
head
face
eyes
shake me to my core

barely small enough
for me to contain
to minimize the damage
what will I do
when he is older
bigger
and I cannot keep him safe

minutes pass
i sense rather than see
the softening of his cheek
the easing of his brow
as suddenly as it came
the storm has passed
for now

he settles
passes out
not so much asleep
as utterly spent
arms flexed
and slightly aloft
as if to grasp
or fend off
an unseen
or unwanted
touch

i weep
shaking silently at his bedside
trying to pick up the pieces
of my battered
shattered spirit
piecing myself together
so the seams don’t show
a quiet prayer
“I love you, bear”
whispered in the shadows

my hand trembles on the doorknob
as I slip out
into the brightly lit hallway
i make my way
reluctantly
downstairs to eat dinner
knowing
I will taste
only bile
and ash
as i wait
for the storm’s return

 

Image courtesy of Rhandell Mitchell (http://rhandellmitchell.com)

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Possibilities – Part two

I believe that man will not merely endure; he will prevail. He is immortal, not because he alone among the creatures has an inexhaustible voice, but because he has a soul, a spirit capable of kindness and compassion. ~ William Falconer

It’s painful sometimes to see how our lives have changed through the years; how the path has diverged so greatly from where we thought life would take us, what we thought we’d have, where we thought we would be .  The kind of life we would give our children.  The fact that we thought we’d have more than one child or that we are now living on roughly one-third of the income we had when Nik was born but our expenses are pretty much the same or slightly more.  You know, those developmental toys and therapeutic items all add up quickly.  Not to mention time lost from work for hospitalizations, etc.

We know we are certainly not alone in having our lives turn out so different from what we envisioned as young(er) newlyweds and expectant parents.  Each person, each family, carries their own burden of sorrows with them.  Sometimes, they seem so unbearably heavy that there is a very real danger of suffocating under their weight, no matter how hard you try to keep them from crushing you.

Yet, somehow, in the midst of it all someone reaches out a hand through the magic of the internet and makes the impossible, well, possible.  Sometimes it’s with loving and supportive words to let you know you’re not alone and you’re not foolish or crazy— or whatever other self-denigrating adjective you’ve put on for the day.  And sometimes, the generosity of one person sets in motion something too wonderful to imagine it could be real.

The daily struggles to see the forest for the trees in a world of developmental delays, disabilities and medical challenges is difficult.  I try, I really do, to stay positive and hopeful and keep my eye on the bigger picture —and always on the joy that is my son.  But, sometimes, it is defeating to look around and realize there are opportunities I can’t afford to give him.  Not now, anyway.  My husband and I have learned a lot about ingenuity and making-do and we try not to ask for favors or charity.  Certainly not for ourselves and, rarely, for Nik unless it’s vital.

We’ve been blessed with a great state university which has a full-time program in disability studies.  One of the services they provide is an assistive technology initiative where anyone in the state may borrow gadgets, gizmos and devices to try for a two-week period.  It’s kind of an assistive technology lending library.  We’ve borrowed numerous items from them in the past, so when they got on board with iPads, I was excited!

Nik’s cerebral palsy, while appearing mild to the casual observer, leaves him with little ability to hold a crayon or a pencil.  He cannot control his movements enough to do more than scribble on paper no matter how hard he tries; even hand-over-hand is difficult for him when it comes to any sort of writing or drawing.  The concept of a mouse and keyboard are beyond Nik’s cognitive processing ability at the present.  I figured a touch-screen technology would make it easy for Nik to continue to expand his growing love of letters, numbers and words (ok, and YouTube videos, too!) and to be able to express his knowledge in ways that even his speech-generating device doesn’t allow him to at this time.

I’ll be honest, our first trial with the iPad, back in July, was a flop.  My expectations that Nik would miraculously grasp the concept of the programs we tried, would be able to control his fingers enough to create the desired results were too high; I had so much emotion invested in his success.  Nik, quite simply, wasn’t interested.  I returned the device with regret; I had become totally addicted to Angry Birds.  Nik, on the other hand, didn’t miss it at all.

Fast forward a few months.  With the daily exposure to school, Nik’s desire to learn and to do “work” —as he calls it on his speech device— grew rapidly.  It wasn’t until he was hospitalized in late October that I began to think he might be ready to try the iPad again.  The hospital has an amazing, state-of-the-art touch-screen TV/computer system in each patient room.  While Nik was confined to bed for the better part of five days, he was highly motivated to figure out how it worked.  While he couldn’t quite navigate with ease, he definitely caught on to the whole “I touch this screen and something cool happens” vibe.

With the change-over to his new school placement on the horizon, I decided to give the iPad one more chance before giving up entirely.  The difference a few months has made! Nik took to it like a fish takes to water.  He went from only mildly curious to avidly obsessed with the First Words spelling game (trial-version) and some of the simple matching and puzzle games.  His rapid facility has amazed us and given us significant hope that this could be a technology which would be useful for him in school.  But, we also knew the price was out of our reach.  Not just now but for quite sometime.

I posted some pictures of Nik with the iPad on my Facebook page and people began to comment that we should get him one.  I made it clear it was out of our reach right now.  That’s when the angels, the unicorns— the fairy-godmothers struck.

Shivon— who has a world of great karma due to her, I swear— sent me a private message to ask if she could set up something for people to chip in for an iPad for Nik.  I didn’t answer her for two days as I battled with my pride and my fear that people would think we were being greedy or presumptuous.  My love for my son and my belief in the possibilities before him won out. I told Shivon it would be ok.

Unbeknownst to me, while I was hemming and hawing and stalling, Shivon had already put her head together with Jess and Shannon to figure out the best way to achieve the goal.  Once I gave the green light, they were off and running.

As the money poured in —from places and people I’ve never even heard of as well as old and dear friends—I felt like an announcer on a public radio pledge drive as I emailed Shivon the updated totals. It was funny— and unbelievably humbling and moving at the same time.  In less than forty-eight hours the goal was not only met, it was exceeded. Nik’s iPad has been ordered!  Shannon even arranged for some of the folks from Moms With Apps to hold an “apps shower” for Nik; they sent codes for numerous apps for free to help us get started.  The generosity has been overwhelming.

I think my tweet from the first night of fundraising aptly sums up how I felt:



I won’t name all the names of the many contributors as I’ll be sending a special thank you to each of them once Nik’s iPad has arrived.  I don’t know if I will ever find words to adequately convey the depth of my gratitude for their generosity or to tell them just how much hope they have extended to our entire family.  Their selfless gesture has touched us in ways they may never know or understand.

But, the story doesn’t end here with Nik.

There are so many families just like mine —families with a wordless child or even adult member with autism.  Families who cannot afford to take advantage of such an incredible technology breakthrough without financial assistance.  Families who may not know the possibilities exist or who are too proud to ask for help.

This year, the HollyRod Foundation is giving away iPads to families who would not otherwise be able to afford them.  There is detailed information on the foundation website, including opportunities for people to make contributions to help others experience the miracle of communication, the wonder of discovery of the gifts which lay hidden within each wordless person.  Please give what you can and share the information with your friends, family and colleagues.  (For convenience, you may text HollyRod to 27138 to make your pledge at any time.)

Your gift, no matter how small, can change a life —a family—forever.

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A real stand-up guy

My son is a wise-ass, erm,  comedian.

Overheard in the playroom early this morning…

Me: Good morning, Lovey-bear! Can you tell Mama “Good morning?”
Nik: (using his “talker”) Yes.
Me: Um, honey, can you use your talker to SAY, “Good morning?”
Nik: Yes.

Excitedly, Nik starts to reach for his talker as if he’s going to comply with my request for a greeting.

Nik:  Go swimming please. Swimming cool* please.

I swear, Rodney Dangerfield had nuthin’ on me.

[We think Nik is saying cool where he means to say pool. It's awfully endearing.  Until one hears it all.day.long!]

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Mercurial and ever-changing Autism

“Never say never, for if you live long enough, chances are you will not be able to abide by its restrictions. Never is a long, undependable time, and life is too full of rich possibilities to have restrictions placed upon it.”

~ Gloria Swanson

 

When my son was about three years old, we spent the night in the hospital for a video-monitored EEG.  The EEG was actually ancillary to the reason we were in the hospital in the first place as he had been very ill with some sort of gastroenteritis and was very dehydrated to the point of needing intravenous fluids.  This was not our first hospital stay; my son was born extremely prematurely ans spent the first 209 days in the neonatal intensive care unit (NICU).  He has gone through more surgical procedures than most people endure in a very long lifetime.  Thus, he is no stranger to the invasive procedures inherent in a hospital stay.  He is also a trooper, putting up with things most of us would whine about.

On this particular stay, he suffered the indignities of being swaddled into a papoose board to allow the EEG technicians greater access and cooperation for placing the leads.  If you’ve ever had an EEG, you know the leads are numerous and the goop used to hold them in place is sticky.  A twenty-four hour EEG in the hospital is worse; the leads are held in place with the medical equivalent of model airplane glue which is dried with a hair dryer.  Did I mention, there’s somewhere in the neighborhood of twenty electrodes or more used for an EEG.  Did I also mention that my son hates to be restrained in any way?

My poor boy fought so hard that he actually got a hand free from the swaddling —ripping out an IV line in the process.  He never said a word through it all.  (Why would he?  He’s nonverbal.)  He kicked and screamed to bring the house down but he never said a word.

The following morning, my indignant child —who also was unable to stand on his own at this point in time— badly needed a bath.  His hair looked like it had been styled with an egg beater and glue and there were smears of dried blood on his arms and torso.  One of the very kind nurses offered to let us use the bathtub in the therapy room because it was big enough if I needed to get in with my son; it was our first time ever trying a bath in a real tub.  Nik was small enough that we were still using an infant tub at home for the convenience and security; his trunk control wasn’t strong then and we feared he might topple over in a regular tub so we’d simply never tried.  Despite the larger tub, I was fairly confident that this would be a simple enough procedure as my boy always loved bath time.

Never was a mother’s intuition more wrong than that morning.  The moment I placed my naked, filthy child in the tub —just to let him feel how it was different from his tub at home (and with no water in it yet)— he catapulted himself  to  a standing position holding on to the side of the tub and said screamed the first and only word I had ever heard him utter. “NO!”  The nurse chuckled and said “I thought you said he doesn’t talk.”  “He doesn’t,” I stammered.  We spent the next hour trying to calm him and clean him up as best we could before heading home. 

* * * * * *

Time is a great equalizer and many things have come to pass which we never thought we’d see.  My son began walking shortly before his fourth birthday.  In the blink of an eye, Nik seemed to go from a non-ambulatory child to the fastest of runners and most agile of climbers.  He even learned to love the water again by spending countless hours in my sister’s swimming pool over the intervening summers— many of those hours spent screaming and clinging to me or Niksdad.  He’s even learned to like baths once more and would be happy to play in the water long after it’s turned cold and his fingers and toes have gone wrinkly.

But, seriously?  Nothing could have prepared me for yesterday.

* * * * * *

It was an unseasonably warm day filled with tremendous noise and disruption which kept Nik off-kilter all day.  A crew was working to replace the roof on our home; it was noisy and the house had been tented to protect it from the debris being ripped off the roof.  Nik’s usually quiet, bright play area was anything but.  Despite it all, Nik seemed pretty sanguine about it all— at first.  As the day wore on, we could sense the tension in our son though we would have been hard pressed to identify anything more specific.

  Niksdad spirited Nik away for some quiet time at the park.  Despite Nik’s apparent imperviousness to all the noise, we could tell the disruption was taking a toll by the way he was perseverating on specific things which he hasn’t for a long time.  It was definitely time for a getaway! 

Despite falling asleep in the car on the trip home from the park, Nik was in better spirits when they returned.  He was also badly in need of a bath.  My husband removed Nik’s shoes and orthotics in preparation for “the b-word.”  “Are you ready to go take a bath, little buddy?” Nik squealed (nearly a shriek!) and began to dance in place like an excited pony.  Then, he bolted from the room, making a beeline for the stairs.  He paused just long enough to grab his daddy’s hand to pull him along.  My six-foot-one husband had a hard time keeping up.

It was one of those rare moments when so many things come together in an instant, so many skills taken for granted:

* comprehending the question
* motor planning and coordination
* desire to share the experience (of the bath)
* recognition of that desire
* appropriate interaction to request company
* expressing emotion appropriate to the situation

I wish I’d had my video camera at the ready.  Instead, all I could do was laugh. 

And marvel.

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No foolin!

[Author's note:  This is not an April Fool's joke.  These events really happened in my home. Today.]

Nik slept through most of the night; he woke for about an hour at 11:00 p.m. last night, asked for his book and had a temper tantrum when he did not receive it. (Tough luck, kiddo.)  I feel compelled to add that Niksdad and I lay in bed chortling with glee at both the impressive display of vocal histrionics coming through the monitor and the fact that this behavior was so, well, normal.

Nik went back to sleep around midnight and proceeded to sleep straight through until 8:15 this morning.  No, that’s not a typo.  In fact, we’ve had a few of those kinds of nights in a row now.  I haven’t mentioned it for fear of incurring the wrath of the sleep gods, but I honestly wonder if we’re turning a corner. 

To say the benefits of good sleep are plentiful would be a gross understatement.  Nik’s been eating better, playing more happily, cooperating more readily (swoon).  The leaps he’s making in communication have just blown us away.

Today, Nik managed to get his pants on and pulled up all by himself.  That alone is a herculean task for a child who has poor fine motor control, serious attention wanderings, and who won’t generally use both hands at the same time.  Oh, and he had to put down his beloved letters in order to do so.  HUGE.

Many of you know that we recently got Nik’s speech-generating device.  It’s been challenging to figure out how to tell you more about it since I am still learning “best practices” for implementing it and teaching Nik how to access what he wants to say.  It’s somewhat akin to giving a brand new reader the entire Encyclopedia Britannica and asking them to find the section on aardvarks. Overwhelming.

Nik —being, well, Nik— seems to have already figured out some of it for himself.  Just this morning he wandered over to his “green box of words”, turned it on by himself and proceeded to touch all the food choices to let me know he was ready for breakfast!  Granted, we had a few months’ worth of trials with a loaner so this is not completely new to us,  but Nik has been exploring and finding new words and trying them on for size.  I give him feedback for each word, trying to help him see that it’s not just a sound. 

Nik is discovering the power of communication.  He’s also realizing that it’s a reciprocal activity requiring a partner.  If I leave his device turned on and accessible to him while he’s playing, Nik shows little to no interest in exploring, unless he has something to say.  He already recognizes that this magical box is not a toy.

Ha! As I was writing the above paragraph? Nik turned on his device and told me he was hungry.  Using the actual word “hungry.”

The boy is voracious —not just for food.  He’s on a quest to learn all about the world around him and how to be in it, how to master skills to build on.  He wants to be with people and be social—he just needs our help in learning how to do that.  He has so much going on inside his beautiful head but doesn’t know how to get it out there.  That’s my job —to help him find his voice.  To empower him to tell us who he is, how he feels, what he thinks.

Our shared responsibility —yes, yours and mine? To listen when he communicates, to honor what he feels.  To nurture the potential he already knows is there.

April is Autism Awareness Month.

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