Welcome to AutismVerse

"We don't dwell on what can't be: 
It limits possibility."

Welcome to AutismVerse, a collection of poems documenting our journey into the world of autism.  Our low-functioning autistic son Billy is now 22, and although he is largely non-verbal, he is doing well. In this blog we are publishing poems in honor of all the families out there who are struggling with an autistic child who is difficult to manage.  It is the story of our love for Billy and his place in our family. It is also the story of a collaboration between Billy's mother, me (Karen) and the writer of the poems, India. Read more about our collaboration, which started when Billy was just 10, in our Backstory.  In the following poem, India gives an overview of our struggles with autism and also our progress, which has been slow but, thankfully, very real.

The Gift of Time

Oftentimes, when the kids were small

We had no time to rest at all.

One would be crying, one was wet,

One was autistic, don't forget.

This meant doctors, and MRIs,

Hope mixed with sorrow, midnight cries.

No one went hungry, but day to day

mere survival was what held sway.

And though we hoped that change would come

the lack of progress left us numb.

Then, little by little, bit by bit

Each of us got the hang of it.

Ricky grew into the helpful one,

keeping us sane, our middle son.

Michael, the fun-filled youngest boy,

is full of questions, full of joy.

And what of Billy, our first child,

by wondrous whim of nature styled?

 Whose path is different and yet

Who walks with us with no regret,

Who grins when I come visit school,

 and doesn't care that it's uncool,

Whose need for movement keeps us trim,

whether we're swimming, or jogging with him,

(who, though he'd not strike you as bold,

Has thrice won Special Olympics gold),

 Who loves to hear us sing along,  

especially to a Christmas song,

Who never tires of favorite things

The tandem bike, the playground swings,

Who grows up, but remains a child

In certain ways that make us smile.

Who'll help in any way he can,  

Who'll stay with us, when he's a man.

Back when life seemed on the brink

 of utter chaos, who would think

 that order could regain its grip,

 that gradually the scales could tip

 back towards peace and breathing space,

a not quite perfect, but happy place.

 Humble blessings, yet I confess

 we count them miracles, nonetheless.

In the Beginning

Karen:

     When you are in the middle of a crisis it is very difficult to look up.  In fact looking up probably is not advisable, you may lose your head.  So you keep your head down and plow ahead, because really it is all you can do.  I smile when I hear that country song,

“If you're goin' through hell keep on movin',

Face that fire, walk right through it,

You might get out ‘fore the devil even knows you're there.”

Because that that is exactly what you do.  You keep on going.  You may or may not get out, but you don’t stop.  You don’t have a choice. 

Our particular hell was raising Billy, our severely autistic first child, through infancy and his elementary school years.  It was indescribably hard.  Billy is now older and although he is not always easy, he is so much calmer and happier now; really there is no comparison.  These poems attempt to put some of our journey into words.  Now that we have come out on the other side, it is so good to look back and think about what we went through.  We also hope to share the slow realization that having an autistic child is not the end of the world, but rather the beginning of an adventure that, like raising any child, brings a lot of joy along with the struggle.

Billy was a difficult baby but we had nothing to compare him to.  The real problems began when we realized something was wrong with his brain when he was 10 months old.   Every parent of an autistic child has a different story; in our case Billy had brain damage that showed up at his ten month check-up when we learned that Billy’s head circumference had barely grown at all since he was born, and it, along with the brain inside it, should have grown several inches.   I will never forget that doctor’s visit in the Upper West Side of Manhattan, where we were living at the time, and how the nurse measured and re-measured his head and looked at first confused and then concerned.  Then the pediatrician came into the room and went through the whole measuring thing again, and our journey began.

Things went rapidly downhill from there, and along with all that heartache, we also had to deal with the fact that our son. as he grew, became basically unmanageable.  It was not that he didn’t want to do what we told him, we later realized and sensed even at the time, but that he just didn’t understand what was expected from him.  Why couldn’t he flood the bathroom?  The water felt so good!  Why couldn’t he run around the neighborhood, there is a world out there!  (Why couldn’t he go into neighbors’ houses uninvited and unannounced, they had fascinating ceiling fans to turn on and stare at!)  And so on.  Billy took every bit of our energy, every minute of the day, just to keep him safe and the house from being destroyed.

Into this chaos we brought two other children.   The first one, Ricky, was born three years after Billy and was planned – we wanted two kids, and were willing to take our chances.  The second one, Michael, came along 12 months after Ricky and was a surprise.  A surprise from heaven, as it turned out, although it took awhile for us to realize that.  We were so fortunate to have good people to help us, and one person in particular got us through the really tough times when all the kids were little and Billy was out of control.  Years later, she got her own poem. She deserves so much more.

India:
     The dedication says it all. You know who you are.

For Pat (Dedicated to Angel Helpers Everywhere)

Pat came to us, the story goes,

She placed an ad, but no one knows

How we made it, by what Fates

We topped her list of candidates-

Our home! With Bill and two small boys

So chaotic and filled with noise, 

We can't have been a likely bunch

and yet she choose us on a hunch,

Just walked right in and smiled that smile, Like Mary Poppins - 

Jamaican style.

Helped wherever she was needed,

Gave baths, nursed hurts, was not defeated, Not ever, though our 

   family nest

 Sometimes resembled Bedlam's best.

 With each boy she was firm, but kind,

And to this day I've of the mind

That Michael's confidence and poise

is because, of all our boys,

She sensed he got lost in the mix,

and engineered a simple fix:

Lots of love, extra attention

Special hugs and special mention.

Michael couldn't help but thrive.

(He'd run to meet her on the drive.)

But each boy loved her. So did we.

She shared our lives and family.

One secret though, I never shared.

She cooked, and thought that Billy cared

What he ate. If we were looking

She'd boast:"Billy loves my cookin' ."

Little did she glean, alas,

That he's have eaten twigs and grass!

But if her intuition flagged

In this respect, and if she bragged,

It's simply that she loved to see

Billy eating heartily.

Patient, smiling, kind hearted care,

For three years she was always there.

Those years weren't easy, yet it's true,

 Without her, who'd have 

 pulled us through?

Some people bring a soothing light,

A bright calm that dispels the night,

and if they hide their wings, I guess

This proves them angels nonetheless.

Karen:
     It was when we were pregnant with Michael that I first met India, who collaborates with me on these poems. I was a lawyer in New York City and had a very good, happy career on Park Avenue in mid-town Manhattan up to that point. I worked part-time after Billy was born in 1992, which in the law business meant that I worked nine to five, five days a week.  I went down to four days a week after Ricky was born, and then my law firm decided it no longer wanted part-time employees, so they helped find me another job at a small firm on Third Avenue and 55th, where India worked.

India and another woman attorney at the firm named Tamara welcomed me into the firm like they had been waiting for me for years.  We initially built our friendship by discussing what we should have for lunch.  This was a subject that India cared deeply about, and so did I.  We would discuss not only where we should order from, but what type of bread we should have on our sandwich, whether we should ask for light mayo or regular, and so on.  Tamara was part of this discussion too, and because we always needed to eat, we always managed to check in with each other every day to discuss what was happening in our lives, professional and personal.

This was the time that we were really “going through hell.”  I think most parents of autistic children would agree that those early years, when your child is getting diagnosed and you still have too much hope that is being crushed on a daily basis, are some of the worst times of their lives.  They certainly were for us.  My legal job in general, and India and Tamara in particular, helped me get through this time by taking my mind off of it and giving me a break from what I was dealing with at home.  I was so grateful to be able to go to work and leave home and shut the door behind me and talk to adults (lunch with girlfriends!!  heaven) and have some order to my life.

At some point Tamara showed me a poem India had written about Tamara’s various black jackets that she wore to work. Here it is:

Tamara's Jackets

Count them there upon the rack,

Tamara has nine jackets, black.

No ordinary jackets these,

so listen while we count them please.

The first that captured her affection

had a certain French Connection.

Then Ms. Loomis, that little smartee, bought the one by Isobel Ardee.
Next, a small SoHo boutique rendered her a true antique.
Then - lest the first three shrink, or fail her
-she bought an extra at Ann Taylor.
Too posh to eat french fries or pies in,
was the next, an original Eisen.
Then Tamara wrought a scheme
that was a jacket lover's dream.

Thus, truly wonderful and rare

were the Kenar breeding pair,

who (somehow) produced a Calvin Klein

that's not quite jacket number nine.

And so we end this jacket ode

with the last from Episode! 

Tamara told me that India regularly wrote verses such as this, and encouraged me to have India write a poem for me.  This is not something that would have occurred to me.  I was too busy keeping my head down and just trying to get through the day.  But the thought stayed with me.

We Start to Collaborate

India, me and Tamara

Karen:
     Tamara and I discussed how we could use India's knack for writing rhyming stories, and that was when the idea of the annual Christmas card came about.  Since 2000, we have included a poem (by India) in each of our Christmas cards. First I asked India to do a poem about the younger boys’ hockey exploits, since at that time in our lives we were living and breathing hockey. India and I started to learn to work together. I tell her a story and she asks for more details and I try to remember everything I can, and out comes a poem about it. It is always such a delight to receive the poem that I know she had been working on!

India: 
     If only I had known what Karen and Tamara were plotting!

The boys are at the end of a hockey game

Holiday Heart

What with Gretsky and Orr and Hull

hockey has never been dull

But true fans would also be wise

to note players of much smaller size,

who, less versed in hockey’s rough art,

play instead with abundance of heart.

Michael Mariscal played for the green

last season – his big brother’s team,

but while Ricky had most of the skill, 

younger Michael yet played with a will.

To each game he came with a smile

untroubled by technique, or style,

eager, but equally content,

to be placed on the line or the bench.

All season, with admirable pluck

in pursuit of the elusive puck,

his stick work considerably choppy,

his ankles endearingly floppy,

he muddled his way through each game, 

but the outcome was always the same.

If he shot for the goal, he missed,

nor did he make an assist.

But one game, towards the end of that season,

came a play that provides this poem’s reason.

Picture now, in the stands, Mom and Dad,

(exhausted, holding one extra pad,

left over after Michael and Ricky

each seemed to be padded quite thickly),

by their side was Billy, quite content,

to sit still until his popcorn was spent.

And little did any of them think

that this time at the ice hockey rink

would break the familiar cycle

for one little player named Michael.

Directing your attention floorward,

on the ice was Michael, playing forward;

so far in the game, he’d done naught,

and I’m sure that he never thought,

as he fondly watched Ricky move, 

That his own luck was set to improve.

Now the puck came to Michael’s stick

and he made a decision quick-

so it seemed – that without even blinking

before he had much time for thinking,

he shot, through an unguarded hole

and scored (oh my lord) his first goal!!

Billy’s popcorn flew up in the air

Michael’s goal touched everyone there,

You heard war whoops and whistles and cheers

as if there’d been no goal of years,

as if, out there on the ice

some ‘miracle of rare device’

had transpired, with Michael its cause,

the focus of all the applause,

and Michael knew then hockey’s glory

but that’s not the end of our story.

One day, some months after that goal,

a (small) secret taking its toll,

Michael felt the need to confess

and his secret was – can you guess?

As he told it to Mom on that day,

he felt funny taking credit for that play:

His goal had been by mistake,

it was not one he’d meant to make.

He’d been trying to pass the puck

to Ricky, and simply by luck,

the puck his intentions ignored,

and, somehow or other, he’d scored!

Now that is the end of this tale, 

That came in your holiday mail,

But remember that the only true art

Is to play with an abundance of heart. 

Sleep-Away Camp -- a Wonderful, Scary Gift for Parents

Karen:
     In 2013, Billy went away to Camp Starfish, a truly wonderful camp for special needs kids, for 18 days – a huge event for us, since it was the first time in twelve years that we didn’t have to take care of Billy.  This is the poem that got my and India's collaboration on autism poems really started.  It seemed to touch a nerve in everyone who read it.  The response was tremendous.  You an see that our family is still “going through hell" at this point, but it is starting to get a little, just a little, better.

Michael and Ricky at camp pick-up

A Christmas Gift in July
(Billy goes to Camp)

A child holds a place in your heart
But sometimes you need space of your own
Many children thrive at sleep-away camp
But would Billy? This was unknown.

Often our friends would suggest camp.
But my mind would fill with fear.
So many things could go wrong;
The answer was “maybe next year”.

But there was a place called Camp Starfish
Where my friend sent her own autistic son.
We visited one day, during her son’s stay
And found him happy, and having fun.

 By May it was up to us.
The Camp director was willing to try.
Then Billy’s trial run at a weekend house
Convinced me that maybe so was I.

Driving up to the camp in late June,
Early summer in all its glory.
Within Billy’s suitcase was Leopard the Lab,
A photo album, a Dr. Suess story.

Small items of comfort for him,
But comfort was not to be found,
As we drove into camp and Billy
Apprehensively held his ground.

He’s seen every building before.
Even visited where he would sleep.
But just then it seemed to him
That the best thing to do was weep.

He refused to get out of the car.
“I go home” was all he could say.
Camp Starfish was okay for visits
But no way could we make him stay.

We comforted, cajoled and coaxed.
His counselor had no better luck.
Billy only consented to leave the car
In my armpit, where his nose was stuck.

So we walked in this dignified state
Across the camp grounds to the nurse
And I was desperately thinking:
Please, please, don’t let this get worse.

 But in little more than a moment
Things can move from right to wrong.
I spied a young counselor with campers
And they kindly sang Billy a song.

By the end he was singing along
With a smile that banished his funk,
Happily tramping away from his Mom
With all of the kids from his bunk.

Ricky followed to check on him
Making sure that his brother didn’t see,
Stealthily trailing him through the woods
Moving from tree to tree.

And though it seemed like a dream
Just then, I knew Billy’d be fine.
His counselors were skilled and caring,
He’d have friends, and food, and sunshine.

 Sure enough, when we’d call from home,
The reports confirmed this for me:
Billy was good, and enjoying his stay,
Which was great, because so were we!

 And when we came to collect him
(after 18 days had flown by)
He’d made so many friends at Camp Starfish
That as we left, he started to cry.

Next year, I won’t have any doubts.
Next year, it’s the lush life for me.
I’m labeling all t-shirts and underpants,
Then it’s off to camp for all three!

The Tendency to Flee

Karen:

     In 2005, when Billy was 13, we struggled to keep Billy home and safe, when he was running off (in the autism world we call this "fleeing") every chance he got:

WHEREVER YOU MAY WANDER

Huck Finn, Charles Bucket, Davie Balfour:

Fiction’s full of boys who explore.

Boys who wander, boys who stray,

Boys who’d rather not sit and stay.

And though we’d like to think Billy’s the same,

It’s autism that causes his wandering game,

A game he plays that he doesn’t intend,

and one we would neither endorse or defend.

We stay vigilant, but do what we may,

Sooner or later he slips away. . .

Like the time in the Home Depot

(where we suburbanites ebb and flow):

Billy was with us, but then made a dash,

Or must have, because he was gone in a flash.

Up one aisle and down another,

Ran his frantic Father and Mother,

Past the light bulbs, the ladders, the screws,

Searching for Billy, looking for clues,

Finding him, oddly, with a full cart,

Somewhere near the gardening mart,

Unconcerned and looking merry,

Peeking at us through a weeping cherry,

That some poor shopper had picked with care,

Only to have it vanish like air!

Or the time in the ski rental store,

When Billy walked off, to be seen no more,

Until, amid the ski poles and gloves,

A shower of ski boots fell from above;

There was Billy, at the balcony rail,

Innocently causing this boot-shaped hail.

Glad we were, to see he was found,

Yet horror struck as each boot hit the ground!

Once, at a club, on the Cape Cod sand,

Billy was suddenly nowhere at hand.

And while we searched, echoing our motion,

Small blobs of yellow bobbed on the ocean.

Small floating signals that Billy was near

And having his way with the club’s tennis gear!

We soon caught Billy, but balls are tricky,

Some boaters helped out, and so did Ricky.

Speaking of water, there was a time

when Billy sneaked off (with reason and rhyme),

while we visited a friend near a lake,

and decided, though fully clothed, to take

what probably was a refreshing swim,

while we were run ragged, looking for him.

But here is a clue that you’ve searched enough:

You spy your son on the dock, in the buff,

Soggy wet clothes in a pile near his feet,

Just a bit cold and a tad indiscreet!

There is no telling when Billy will roam,

Sometimes we’re away, sometimes we’re at home.

But when he does, both brothers help track,

And both have success in bringing him back.

Michael has eagle eyes, Ricky runs fast,

And each helped out in this story that’s last:

When Billy walked off in the neighborhood,

and our kind neighbors searched where they could,

But nowhere was Billy, and this wasn’t fun,

We searched with the car. We called nine-one-one.

The police found Billy at the Gulf station,

Exceeding his daily potato chip ration,

Displaying faint traces yet, on his lip,

Of having had ice cream, mint chocolate chip!

But still, ‘though we laugh, I shudder today

To think that he crossed a divided highway.

And so that’s the last, but there will be more.

The world is full of boys who explore.

Boys who wander, boys who stray,

Each has adventures, in his own way.

Story (Dedicated to my Support Group) and Moments of Grace

Karen:
     I think it was about this time (2005) that we decided to put together a collection of poems about autism, and in particular about parenting an autistic child. "Story" was written in honor of my wonderful support group of other mothers with low functioning children -- mothers who helped me get through this, more than anything else, but it is also for everyone out there who has people they can talk to.

India:
     This is a very short piece, but talking to Karen before I wrote it was essential to convey the feeling of relief gained when you encounter someone who truly gets it.

Story

I’ll bring the coffee,
You have a seat.
Make yourself comfy,
Put up your feet.
Tell me a story.
Then I’ll tell one too.
How did you react,
What did he do?
Were you embarrassed,
Could you just die?
Did anyone notice
Did you sit down and cry?
Tell me a story;
Make me cry ‘til I laugh.
Then I’ll do the same
on your behalf.
Tell me a story:
Something wild;
For I also have an autistic child.

India DeCarmine

Karen:
     People often misunderstand. I once got a look from someone in a parking lot of the local beach after Billy had hit me. Billy was upset because we had to turn around and go home due to thunder, when we thought we were going swimming.

Moments of Grace

Ah . . .there’s the look.I know it well.

The frown that comes before I tell this stranger that my son, my Bill,

has autism;

I’ve had my fill

of censure,

of the furrowed brow,

of having to explain the how, the why, the now. 

Still, once it’s done, the stranger’s face

sometimes conveys a moment’s grace,

Granting me a brief reprieve

And in that moment’s space - I breathe. 

That is, if Bill is still in view.

If not, I’ve other things to do.

Times of Despair

Karen:

     In 2007, I read a news story about a mother in England jumping off a bridge with her handicapped son, killing them both.  This hit me hard because in the dark days when Billy was a toddler and failing to develop properly -- when we were just realizing something was seriously wrong -- I fantasized about jumping off the George Washington Bridge with Billy in my arms. The following poem deals with the harsh reality of trying your very best and yet feeling that you've failed your child. You get through this by believing in your child, and in yourself.

No Miracles 

There is a bridge in England where

One loving mother took her son,

and, in despair of miracles,

ended all that she’d begun.

*    *    *   *

When Bill was small, we read each book

-true stories like shimmering lures-

with hope and determination,

we searched for treatments, for cures.

Some books implied that if only

We worked hard with Bill, if we tried,

He had a miracle waiting

Locked up and hidden inside.

But miracles run scarce, it seems;

Our day to day struggles prevailed.

And though we made every effort

I sometimes feel that we failed.

Though Bill has come such a long way;

Though we love him; though we are strong;

I read of one mother and son

And cry, though I know she was wrong.

Listen, I know that there may be

No miracles, do what we will.

No matter. We’ll live without them,

Believing, instead, in Bill.