Mine

Happy, happy sigh…

‘Cause everyone that sees you always wants to know you
And everyone that knows you always has a smile
You’re a standing ovation after years of waiting
For a chance to fall and shine
Everyone calls you amazing, I just call you mine

I Just Call You Mine ~ Martina McBride

Because Autism is Not Political

If you are a long-time reader of my blog — thanks for still being here even though I haven’t written much this past year— you know that I shy away from being political or from telling someone else what I think they should do.  However, Autism —hell, disability of any kind— knows no politics, shows no favoritism to any particular socioeconomic, ethnic or religious group.

This issue is so important that I have to speak up.

Did you know?

• There are 22,000 children of military families affected by autism.
• Less than 10 percent of those children are getting the services they need.

There’s a bill sitting in committee, okay, let’s be honest here —DYING OF NEGLECT in committee, which could change that. A bill which could level the playing field for our military families and their children who are dealing with the day-to-day realities of autism AND war. It’s the Caring for Military Kids with Autism Act (CMKAA) – H.R. 2288.  It was originally assigned to the House Committee on Armed Services, and then was referred to the Subcommittee on Military Personnel on July 19. And there it has sat, ignored.

This bill would:

• Streamline the acronym-filled process for military families to access services for their autistic children through TRICARE, the military’s healthcare system.
• It would also remove the extremely stringent cap on services that can be received.

My friend Rachel, a military wife, autism mama and fierce advocate, has put together a slew of posts (go here and search for CMKA and even a website dedicated to CMKAA where you can read the text of the bill (and click on a link to contact your Congressperson).

Here’s the deal —as long as this bill sits, ignored, it will die.  Since Congress is on recess now, your Representative will, most likely, not see or act upon your heartfelt plea for support. ASK ANYWAY. (Just click here and fill in a few spaces…voila! Message on its way!)

More urgently, we need your help in getting the attention of the White House. If we can garner 25,000 signatures on this official White House petition by February first, the President —as in President Obama — will have to give his attention to this matter.

Thousands of brave men and women have sacrificed so very, very much for your right to sit in your office or your home reading these words, uncensored and at your leisure. Some have made the ultimate sacrifice —their lives.  Please, even if your life is not personally touched by autism or your political leanings lead you condemn the wars in which we are engaged, don’t make their sacrifices meaningless and don’t make the 22,000-plus children with autism the victims of politics. Or apathy.

Please go here NOW to sign the petition. (You will need to sign up for a White House account, which takes less than a minute, to sign the petition. Don’t let that be the obstacle which keeps 22,000 children from receiving appropriate care!) Then share this with your friends, your co-workers, your neighbors.

Because, in the end, we all benefit from having our military families receive appropriate care for their loved ones with autism.

In which Nik gets a very special gift

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

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

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

In which the end is the beginning

For last year’s words belong to last year’s language
And next year’s words await another voice.
And to make an end is to make a beginning.
~T.S. Eliot, “Little Gidding”

The world is round and the place which may seem like the end may also be the beginning. ~ Ivy Baker Priest

If the end can be the beginning then the beginning can also be the end, right? In which case, I’ll simply start in the middle.

If life had been kind enough to afford me the luxury of concurrent time and energy this past year, I would have written all sorts of blog posts about where we were and what we were doing. About Nik’s continuing health challenges. About really awful school experiences which, thankfully, turned into really fantastic school opportunities coinciding with the new school year and a new teacher. Of the constant struggle for balance between the demands of raising my child with his myriad needs and tending to a marriage, thankfully, built upon a rock solid foundation. Of the fight within my own self to find ways and time to better care for my own needs; to don my proverbial oxygen mask first.  I would have written of beginnings and endings…and cycles.

Instead, I will simply start where we are and not worry about looking back. I will, instead, look forward and inward, focusing on the potential and strive to share the journey with you.

I wish you a very happy new year. May 2012 be not an ending but a beginning. A blank page upon which we write our potential instead of recording our flaws.

And ye, who have met with Adversity’s blast,
And been bow’d to the earth by its fury;
To whom the Twelve Months, that have recently pass’d
Were as harsh as a prejudiced jury -
Still, fill to the Future! and join in our chime,
The regrets of remembrance to cozen,
And having obtained a New Trial of Time,
Shout in hopes of a kindlier dozen.
~ Thomas Hood

We spend January 1 walking through our lives, room by room, drawing up a list of work to be done, cracks to be patched.  Maybe this year, to balance the list, we ought to walk through the rooms of our lives… not looking for flaws, but for potential.  ~ Ellen Goodman

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.

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.

Super Dad

Happy Father’s Day to my dearest spouse, Niksdad.  I’ve said it here a couple of times in recent days, but it bears repeating…

You are an incredible father, a wonderful husband, and my best friend.  

Though he doesn’t have the words to tell you with his voice, I see the love and adoration shining in Nik’s face every time you walk into a room.

It’s evident in his squeals of delight when you give him a bath or tell him you’re taking him to the park.

It’s there in the way he trots around the yard— “helping” you do yardwork; the way he sits on the vaccum cleaner when you vaccum (yes, Niksdad vaccums!), reveling in the special game the two of you play.

It’s clear from the way he “helps” put the laundry in the dryer and plays with you in the pool.

He knows when you are gone on the nights you work and he looks for you in the morning when he gets up.

He may not say it with words —and I may not say it often enough— but it’s clear to us that you are a super dad.  We love you.

* * * * * * * * * *

My dear friend, Stimey, has written a beautiful and moving tribute to celebrate the dads of children with autism (and other special needs) which is online in today’s Washington Times “Autism Unexpected” column in the Communities section. I hope you’ll take a moment to read it and share it with the special dads you know.

I guess he’s really ours

My Facebook status earlier today:

Trying to figure out how to break the news to my husband —on our tenth anniversary, no less!!— that our son *must* have been switched at birth. Nik, apparently does not care for fresh-from-the-oven-and-gooey GF brownies. I’m distraught. Clearly, this is NOT my child.

I mean, really, I know he likes chocolate. But not brownies?? Highly suspicious.

Thankfully, it seems I’m off the hook for telling my husband about the switcheroo. (WHEW! That would have been more than a tad awkward.)  I now have incontrovertible proof the boy is my husband’s son.

Nik climbed the gate from the playroom into the kitchen, opened the fridge and started “shopping” for a snack—because, you know, the quarter-pound of chicken salad and half-dozen rice crackers he had just consumed not five minutes prior were not enough. CLEARLY.

Curious to see what he was in the mood for, I let him choose whatever he wanted; being the curious child he is, he chose a closed container—which contained half of a Vidalia onion. I opened it and let him smell it, confident he would wrinkle his nose. “Do you want some?”

I was not prepared for him to sign yes. Further, I was even less prepared for him to actually like it!  My little Shrek-boy ate about half a good-sized slice. Swell.

Wonder if I can get him to eat some parsley. Or a breath mint?

I’d do it all again

Happy Anniversary to my wonderful husband.

Though our path has been anything but the smooth and idyllic one we envisioned ten years ago, I can’t imagine walking through the fire with anyone but you.  You are an incredible husband, father, lover, friend. I love you now more than I did when we met thirteen years ago.

Here’s to the next part of the journey…TOGETHER…wherever it might lead us.

THROUGH THE YEARS
(Kenny Rogers)

I can’t remember when you weren’t there
When I didn’t care for anyone but you
I swear we’ve been through everything there is
Can’t imagine anything we’ve missed
Can’t imagine anything the two of us can’t do

Through the years
You’ve never let me down
You turned my life around
The sweetest days I’ve found
I’ve found with you
Through the years
I’ve never been afraid
I’ve loved the life we’ve made
And I’m so glad I’ve stayed
Right here with you
Through the years

I can’t remember what I used to do
Who I trusted whom, I listened to before
I swear you’ve taught me everything I know
Can’t imagine needing someone so
But through the years it seems to me
I need you more and more

Through the years
Through all the good and bad
I knew how much we had
I’ve always been so glad
To be with you
Through the years
It’s better everyday
You’ve kissed my tears away
As long as it’s okay
I’ll stay with you
Through the years

Through the years
When everything went wrong
Together we were strong
I know that I belonged
Right here with you
Through the years
I never had a doubt
We’d always work things out
I’ve learned what love’s about
By loving you
Through the years

Through the years
You’ve never let me down
You’ve turned my life around
The sweetest days I’ve found
I’ve found with you
Through the years
It’s better everyday
You’ve kissed my tears away
As long as it’s okay
I’ll stay with you
Through the years

In his time

First, a confession — until last week, Nik had not seen a dentist in nearly three years. (Niksmom waits patiently for the gasps and groans to subside.) Worse, it was by my choice that it was so.

The reason for that lapse is best explained in this passage from a post dating back to 2008.

Though he loves to brush his teeth at home —sitting on my lap as we sing a song about brushing — Nik has always hated our trips to the dentist. I don’t blame him; he has to be restrained by strangers who don’t want to take the time necessary to allow him to explore and find his comfort level. Unfortunately, we don’t have a choice about dentists right now so we try to make the best of it; I still have to argue though to be allowed to hold Nik on my lap instead of sacrificing him to their care.

Having discussed the issue with the neurologist and the pediatrician, we recently decided to try a low dose of diazepam (Valium) to help Nik relax a bit; if he’s not anxious about it he won’t fight, right? Wrong, wrong, wrong. WRONG.

You know how some doctors tell parents not to give their kids Benadryl or cold medicine before flying because it can have the opposite of its intended effect? That’s called a paradox response. Yeah, that’s what happened to Nik when he got the drug in his system. To say it wasn’t pretty would be a gross understatement. Picture your sweet little child strung out on PCP (Angel Dust); you’ll get the picture.

I tell you this not to garner sympathy but to illustrate a point. At the peak of his medically induced rampage, all of Nik’s previous behaviors relating to hisepisodic pain returned in full blossom —and then some. It was one of the worst things I’ve ever witnessed; doubly so because I knew that I had caused it. I knew that it was simply Nik’s mind and body reacting to the horrible, disorienting sensations caused by the drug; the knowledge brought no comfort.

Sobbing as I drove the 54 miles home with my feral child, I had a flash of insight.

Yeah, that last line is a tease, isn’t it? Heh heh. (The complete post is here. Go ahead and read it; I’ll wait for you.)

**********

Our decision to return to the same practice we left in such distress, back in 2008, was fueled by the fact that Nik has been showing signs of some mild dental discomfort; guilt is a powerful motivator.  Well, that and the fact that there are no other pediatric dentists in our area who (a) take Nik’s insurance and (b) work with children with special needs.  Oh, and our pediatrician threatened to withhold her adoration of Nik if I didn’t get him to a dentist. (She plays hardball, she does!)

So, it was with great trepidation that we returned to the scene of the trauma.  I was reasonably certain that Nik would fight like a wildcat when we had to hold him to have his teeth cleaned. Right? Um, no, apparently not.

I give you…my rock star of a son. At least, it looks like my son…

So you see, development magic does happen.  Sometimes you have to just walk away and return to try another day, sometimes even years later, but it happens.  It’s all about the timing…his timing.