What the What?

I'm going to need someone to explain to me how THIS...

...Turns into THIS.  IN JUST FIVE YEARS.

(photo credit to my amazing friend C, who is an expert at wielding whatever you call that kind of camera NOT attached to a cell phone.)

With this milestone, I have finally been forced to face the fact that my baby is not a baby anymore.  His body is long and lean (okay, mostly just lean) and absent of all baby fat, even when I squint.  And I've been squinting a LOT lately.

Tonight, I put him to bed and told him I loved him, saying tearily, "I'm so glad you're my baby."

To which he responded, "I'm not a baby, Mommy."

AND THEN I CRIED AND HE STARED AT ME LIKE I WAS A LUNATIC.

Which I am, mostly, but that's neither here nor there.

Five years ago, I rested his brand-new baby body on my chest for the first time, inhaling that magical scent of newborn and marveling that this tiny human was my own.  In the time that has marched past since, he has made us laugh, cry, grit our teeth, and burst with pride, sometimes all at once.

Would that I had the words to do justice to how much I love this little monster.

I'll Love You Forever

I'll Like You For Always

As Long As I'm Living,

My Baby You'll Be

-Robert Munsch

Letting Go

When I was pregnant with my firstborn, I never really worried about what type of mother I would be. I started working with kids in one form or another from a very early age, so I had plenty of experience with children, from preemies onward. I was calm throughout carrying big C, certain that I knew what I was doing - I had bathed children, bandaged bo-bo's, and changed diapers with the best of them. Becoming an instant parent to a 4-year old upon my marriage gave me even MORE experience, and I went into that delivery room without a shred of worry--knowing I was made for this.

Twenty-two hours after beginning labor, a nurse put big C in my arms, and I stared in wonder at this tiny human being who was MINE now, his eyes still fresh with angel dust. Just minutes earlier, we had been one body, he and I, and now he was his OWN person, already starting out on the journey that would take him to being a man one day. From this moment on, he would be DIFFERENT, from one second to the next - always growing, always changing, and it was up to me as his parent to help guide him onward.

Fast forward 48 exhausting hours, and it is time to leave the skilled nurses and doctors behind, to strap his tiny body into his carseat for the ride home. I remember being seized by panic, thinking "Shouldn't there be a test for this? You're going to just LET ME TAKE HIM HOME?"

Forget the time spent caring for other people's children, forget the four years raising our oldest--not of my body but always my own--forget the things I knew how TO do, all I could think about were the things I was terrified I would NOT be able to do. I held his tiny little self in my arms and felt the weight of all that depended on me pressing down, threatening to overwhelm me.

These days, that feeling has come around again--reminding me once again that no matter how much you ever feel like you have things "figured out," life has a way of proving you a fool, every time.

The next two weeks seem designed to test my strength. In one short span of time, big C is turning 5 and starting kindergarten, K is moving away for a year, and little C will be starting REAL SCHOOL and phasing out therapy all together.

Big C needs school. He NEEDS it. His sharp intelligence is making him impatient with his small world, his little mind desperate for new stimulation, a place that can keep up with him. I know it's what he needs, but my mother's heart remembers gripping the dashboard on that eternity of a first car-ride home, and I think again, "What if I can't do this?" I have to put my baby on a BUS, for goodness' sake, and heaven knows how I'm going to do that.

K is spreading his wings, tentatively testing the waters of a life he will one day have to live independently. I remind myself once again that this is a GOOD thing - he is making his own decisions, has a good head on his shoulders, and a strong support system should he decide the waters are not to his liking. But while his wings are itching to spread, I want desperately to grab some scissors and clip them for just a LITTLE WHILE LONGER. Because I know I can't, and because he is braver and more adaptable than his father or I have ever been, we will put him on a plane in two days and spend the next twelve months holding our breath.

And little C? He has traveled a long, long way, my little intrepid warrior. My mental checklist of Skills He Needs To Acquire has grown smaller and smaller as the months have flown by, and I am finding it harder and harder to justify the waiting--for just a little bit longer--to introduce him to the "typical" world he will travel through now. The therapists that have been his guides (sherpas?) tell me that he is ready. That he will be fine. That this is THE IDEAL RESULT of the hard work and countless hours and effort we have all put in.

They are trying to gently nudge us from the nest, but I find myself clawing at twigs and brush and FEATHER, dammit, because I'm not ready. My baby's place to fall has always been soft, the people in charge of guiding him here always smarter than me, but beyond this new checkpoint lies so many unknowns.

It's all US from here on out, and I am once again that frightened new mother, peering through the angel dust at the most precious and fragile thing I have ever been put in charge of. Wondering who made the decision to put ME in charge, and what in the world they were thinking.

For now, I'll hold them tightly when they stay still long enough, snuggle with them when they'll let me, and try to pry my fingers from the dashboard.

Friendship

"Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born."

--Anais Nin

"Silence makes the real conversations between friends.  Not the saying, but the never needing to say that counts."

-Margaret Lee Runbeck

When we were first diagnosed, I remember agonizing over the unknown in little C's future.  What would his life be like in a year?  Two years? Five?  Would he be able to function in a classroom with his peers?  Would he hold down a job, live independently?

Would he ever have friends?

Family is wonderful - he will always have that.  His brothers love him to no end, and God knows I'm grateful for it.  But there's something about friendship that the human soul just needs.  You can't choose your family, and they're kind of obligated to put up with you, but friendship is a choice - someone looking at another person, with all their quirks and foibles and faults, and choosing to love them, as they are.

I've watched, in the months since starting therapy, as little C's social skills have come along.  When we started, he was generally content to play by himself, and I worried--a LOT-- about what that meant for his future.  I didn't want him to just function his way through life, I wanted him to enjoy it, to step outside of his safe little world and form meaningful relationships with people around him.

But how do you teach friendship to kids on the spectrum?

The answer?  You don't.  They teach us.

Completely spontaneous.  Entirely unprompted.  Simply perfect.

From the beginning, C and J just clicked.  There were other girls closer to her age, and boys closer to his that either might have chosen to become best buddies with, but they chose each other.

And it is magical.

They bring out the best in each other.  A simple burp is enough to send them both into waves of giggles, and after five minutes in their presence, I am in awe of how natural it is for them, at the ease of their connection.  I wonder, sometimes, if we adults couldn't take a few pointers from these two.  Both kids have their differences, and their own challenges - but these details are completely insignificant in their world.  They met each other where they are, and that's all there was to it.

A year ago, I would have been content to know that my baby would eventually make a friend.  

I couldn't have imagined how proud it would make me to know that he has learned to be a friend.

A Path Less Traveled

I have so much to tell today, that I'm not quite sure where to start. I'd like to tell you how proud I was of my boys - both of them, with their little sensory quirks - and how well they did with the fireworks they experienced on the 4th of July. How little C, after some initial suspicion, charged right into the fray and started merrily almost-catching his brother on fire at every turn with his newfound love of sparklers. How after a giant boom that sent my own heart to racing, he gleefully demanded, "MORE PARACHUTE!"

(Apparently one of the fireworks set off that night was called a parachute, so every single one after that was subsequently given the moniker.)

Then I'd tell you about how big C, who needed industrial-plant-worthy earphones to make it through New Years Eve last year, was running around like a madman, demanding more sparklers, more parachutes (the term was contagious, apparently), more, more, more!

(I wouldn't tell you how Mommy ended up hiding inside after the first big boom, incidentally.)

I WOULD tell you how at some point after I forced myself to stop hovering at the window, trying to make sure that none of my children lost any digits, it struck me - this was the first social outing we'd had since the children were little more than infants, that I did not end the night in depression. Sometime amongst the whining about eating dinner, climbing on swingsets and begging for JUST ONE MORE BROWNIE, I had forgotten to compare my children to the handful of others running around that house. I had not fretted about what one child was doing that little C was not, I had not hurried after him to drag him from playing in isolation in a back bedroom to gently push him into the fray of screaming banshees running around the back yard.

Yes, he spent time in that back bedroom - but he enjoyed himself back there for short spans of time, then made his way outside to see "What's goin' on?"

At the end of that night, for the first time, I left a gathering with other children HAPPY, if not a little frazzled. Okay, a lot frazzled.

But those events - even those - paled in comparison to yesterday's ride home. Smaller, less glitzy, but infinitely more significant to this mama.

Remember this post? Yes, the whiny one?

As usual, little C decided to answer it in his own way, on his own time, his own terms. As usual, this mama ended up humbled by the way things come around, on a timetable greater than my own.

Yesterday. It is time for the ride home. His therapist and I rush through the how-did-he-do's as the rain around us tries to decide between drizzling and pouring. I know his best friend at school had a birthday today, and I am ready with questions for him on how it went.   Did you sing Happy Birthday? I will ask him. Did you eat cake?

Before I can start my barrage, a query comes from the back seat.

"Mommy. How you spelllllll....cake?"

Startled, I respond. "C-A-K-E, cake, baby."

"Mommy. How you spellll...Happy Birthday?"

We make our way, letter by letter, through the events of his day, as seen through his eyes. We spell the birthday girl's name, his favorite therapist's name, happy birthday (again), and on and on. Eventually, we move to various things that catch his eye out of the car window, and I can do nothing but be grateful for this glimpse into my baby boy's mind, a glimpse that many parents of children on the spectrum may never know.

Hearing about his day may have taken a slightly different form that I may have imagined.

But Good Lord, I'll take it.

Rewind

It's roughly eight months ago, and cleaning day in our little household.  I am dreading this moment, but I know that it has to be done.  So I grit my teeth, and turn on the vacuum cleaner.

Instantly, little C's hands fly up to his ears, and his whole body tenses in panic.  He begins to cry, and my heart breaks.  Again.

I hate it.  I hate every damned second of it, but I know that a lifetime of waiting to vacuum until he's asleep, or at a friend's house, or even in another room, will do him no favors.  At some point, he will be at someone else's house, or at his preschool, or any other random place that vacuums are wielded, and he will need to not go to pieces when he hears that noise.  He will need to keep calm, hold his ears, and take a deep breath -  whatever he needs to do to stay in one piece.

This moment is bigger than the vacuum.  This moment will be a stepping stone to the motorcycle engine, the firetruck horn, the deep bass of the movie theater.

For the many life moments that simply can't be predicted as easily as a vacuum cleaner, I need my boy to do this - starting here, at home, where he has a soft place to fall.

So I grit my teeth, and start vacuuming, careful to keep my actions as seemingly casual and natural as possible.

And still he wails, and I feel like the worse parent on the face of the earth.

Conditioning is suck-tastic that way.

Big C is sitting on the couch, watching whatever program is flickering on the TV.  This is old hat for him, and he is seemingly unfazed both by the machine and his brother's cries.

Or so I think.

With all the energy that is so envy-inducingly present in a 4-year old's body, he springs from the couch, and starts running around the room like a maniac, screaming and waving his arms in the air.

I think at first that he is mocking his brother, but then I see it.

He stops, and looks at little C with that conspiratorial grin on his face that I know will mean the death of me one day.  Then he starts again.

And, magical moments of magical moments, little C takes off after him, his little body shaking with laughter now instead of fear.  His hands are still planted firmly on his ears, and he keeps a cautious distance from the vacuum, but it is a start.  His brother has made this a game, and that is - for the moment, at least - good enough for him.

To this day, every single time I turn on the vacuum, my little boys do the maniacal vacuum dance routine, and it makes me smile.  It also gives me perspective, and hope.  I had no idea what to do to help my little man scale that mountain that he was facing.  I was prepared to grin and bear it through who knows how many weeks of cleaning routines, to condition him, but I didn't know how to make it easy for him the way that his brother - instinctively - did.

I hope - desperately - that they will always retain that bond, that brotherhood will always transcend the perceived boundaries of disability.

I pray that long after I'm gone, firstly that little C will no longer need the maniacal vacuum dance - but more importantly, that if he does, his brothers will never be too old or grown up to dance it with him.

Once Upon A Time

So, my little man has tackled many a skill in the last fifteen months since we started therapy. Some have been hard won, entailing protocols and reinforcers and data sheets. Others have just COME, as if from some cosmic skill fairy.

Pretend play was one of those things that kind of stumped me. How do you teach pretend play? Sure, you can introduce scenarios, and bribe siblings to play along, but you can't force spontaneity, or contrive imagination. Yet every visit to a "typical" preschool setting involved kids little C's age running around like tiny maniacs, pretending to "be" this or that.   I KNEW this was a skill that - if lacking - would be problematic in our Quest for Typical Schooling.

He's so literal-minded sometimes, that it worries me, the thought that he may be TECHNICALLY FUNCTIONAL in a class of his peers, but never really fitting in, never QUITE drumming to the same beat.

It breaks my heart to think of my baby always on the outside looking in.

So we've been plugging along at learning every other skill set necessary to function in a typical preschool (IN THREE MONTHS, HOLY COW), and trusting that the rest will come in time.

Scene:
Last night, mama's in a pretty crappy mood. The day has been filled with DETAILS of every shape and size--doctor's appointments, scheduling FOLLOW UP doctor's appointments, remembering this, checking up on that, and I just want PEACE when the end of the day comes. What I get instead is endless traffic on the drive home, a house that looks like it's been hit by a small tsunami (despite constant efforts to keep up with it), and hungry, expectant children as soon as I walk in the door. Some nights it feels like I JUST CAN'T KEEP UP, and last night was one of those. By the time food is scrounged up, little bellies are filled, and the dog is dragged out of the trash can AGAIN, I am desperate for just five minutes to myself - in the short minutes left before bath time, I need to NOT BE NEEDED just long enough to catch my breath.

Then I hear it, a little, "Help me. Help me." Lord forgive me, my first thought was an exasperated, "Now what?"

I figure he is upset because a piece of one of his favorite toys has come off (again) and the anxiety that is rearing its ugly head here lately is driving him to seek someone - anyone - to put it back together.

Instead, he wanders around the corner with one of my tennis shoes in his hand, and thrusts it at me with a grin, declaring "It's a glass slipper!"

I stare at him, stunned. Not only is this the first time I've heard him string such a long sentence together, he is communicating an imaginative CONCEPT, to me. This isn't "Give me milk" or "Pick me up," this is a precious snapshot of what is going on in his head at that exact moment.

He is pretending.

He then proceeds to thrust his tiny foot into my shoe, lock eyes with me again and declare excitedly, "It fits!"

He has been watching the Cinderella episode of Super Why lately, and here was the result. This kid was taking the concept of the show, processing it, and incorporating it into his play. ALL ON HIS OWN.

Hey, Pre-K? Consider this me, putting you on notice. We're coming for ya.

One of these days...

Whoever coined the phrase "terrible twos" apparently never made it to the "f@%&ing fours". 

My middle child is the same age now as my first"born" was when he entered my life,  and I have spent the last week staring at him in stupification, thinking that I don't EVER remember him being this maddening.  In fact,  I'm pretty sure neither one of our subsequent children would be here right now if he had been.

I love him,  I do.   Most days I'm so proud of him I could burst, but good grief, it's a miracle we all made it through this week intact.

Well, except for the fact that my teenager is sporting a sparkly new cast due to a broken wrist, so I guess that's relative.

But we DID have a phenomenal experience getting little C's hair cut, and started swim lessons, AND I'm chugging along on my book.  I'm only a little bit neurotic about it. 

Sort of.

It's been an action packed week, folks, with an amazing play date...

My little kleptomaniac

An exhausting but surprisingly enjoyable trip to the zoo...

This is so us

And this ending to a trip for a haircut.

So long, mullet!

Turns out I STILL can't get out of one of those without crying.  At least these were happy tears.