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.