Three Little Words

Thank you everyone.

Those three little words were Jack's first as a public speaker. (You can see for yourself right here.) And although for most of us, they come so easily, that hasn't been the case for my sweet kid.

He's spent three years working on those three little words.

As most of you already know, three years ago, our Jack was considered a "non-verbal learner." Fortunately, over the last three years, he has spent every school day in the tender loving care of Nashoba Learning Group.

Nashoba is a place like not other, with devoted professionals who know how to help children with autism reach their full potential. They are committed to sweet Jack and that beautiful mind of his. As he tumbles out of the car every day and grabs the hand of his teacher, I know in my heart the sky is the limit. He's in the right hands.

Not only do they work with children like Jack, they also work with adolescents and young adults with autism. The work is hard. The pay is minimal. But the staff at Nashoba continues to break new ground, believing in kids that pretty much everyone else has given up on.

To express my gratitude, I'm lacing up my running shoes and hitting the course of the historic Boston Marathon on April 18th. To be honest, I'm a little nervous about the run. I'm not getting any younger and have just a few short weeks to train.

But on race day I'll grab a Sharpie and scribble the names of those beautiful Nashoba students all over my arms and legs. When fatigue inevitably hits, I'll glance at a name ... and put one foot in front of the other heading up Heartbreak Hill. (It's nothing compared to the hard work they put in every day...)

You won't see Jack's name scribbled on my arms or legs. I'm saving a special spot for him right over my heart....

I hope you'll consider supporting my run for Nashoba. You can do so right here. Any donation, big or small, would be incredibly appreciated.

Or as my sweet Jack would say ...

Thank you everyone!

Because Everyone Needs to be Heard

Love NBC's "Parenthood"..

Love this!

The Day They All Said "Yes..."

I'm guest blogging this week over at the Autism Speaks Official Blog.

Please stop by and read my latest post, won't you?

Jack's Big Talent Show

Jack closes out the Nashoba Learning Group talent show by thanking the crowd ...



Progress is a sweet, sweet thing...

Autism: The Joy of Christmas Present

So this is the one that gets me...



Like a knife to the heart...

It.Just.Kills.Me...

And I feel terrible about feeling terrible. God, I do.


Those cherub faced, pajama-clad kiddos deserve their moment of joy.

Judge me if you want, but I'll admit it.

Yes, I grieve.

I love Christmas. I love my son. I do.



But December is particularly difficult, reminding me of the life that might have been.


You know the one... where we would all joyously deck the halls while baking cookies and drinking hot cocoa just after seeing the Rockettes and ice-skating at Rockefeller Center, but only after attending church, lest we land on the naughty list. The children would then nestle all snug in their beds ... yeah, you get the picture...

Our Christmas morn plays more like this: Andy and I will wake to the BANG! BANG! BOUNCE! sounds of Jack jumping up and down on his bed. His room is directly above ours, so we hear every bump and thump. (Yes, I like it that way... Andy, not so much.) Then Amy's door, directly across the hall from her brother, will creak open. She'll retrieve Jack from his room and will say sweetly something like "Merry Christmas, Cuddlers!" She'll coax him to try to say "Merry Christmas" in response as they thump down the stairs, hand in hand.

Once they hit the bottom, Amy will run for the tree. Jack will run for the kitchen, scrounging for gummies, or possibly to the family room looking for the stuffed monkey whose long arms he likes to stim with, oblivious to the whole holiday affair.



Camera in hand, the never-ending debate about which way to go will bounce around in my foggy head... Which world do I walk in? Do I ignore Jack's requests and celebrate with Amy under the tree? Or do I let her fend for herself, as I know she can, and make sure Jack gets what he needs.

It's not an exaggeration to admit that I've struggled with holiday-induced depression over the years since Jack's autism diagnosis. But this year, I've finally come to realize I don't necessarily have to choose a world to walk in. I live in our world. It's not necessarily Hallmark commercial-worthy... I do feel like a human ping-pong ball a lot of the time...but it's wonderful in its own head-spinning way.

I knew I had turned the corner the other day, when Andy asked me, "So ... are you in the Christmas spirit yet?" I smiled to myself, thought for a moment, and responded "Why yes. Yes, I am..."

It's strange. I can't attribute it to any sort of Christmas miracle per se. Rather, it's the accumulation of the everyday miracles over these past four years.

Maybe it's because Jack seems so happy and at peace this year. He's finally able to talk just a little. (Fifty-five words at last tally, but who's counting.) He attends an amazing school, where they believe in him and work to meet his individual needs. He receives the best of care from medical professionals who are dedicated to helping him.

And Amy. She's a thoughtful, intelligent, well-rounded kid. She asked for books for Christmas. Books! She's growing up. I couldn't be prouder of the person she is.

I'm thankful that my family is together. We're healthy. There is food in our cupboards. We are warm and safe and dry. From my vantage point, although it's far from typical, all is calm and bright.

I do still feel the knife in my heart on occasion. That's a given that I don't think will ever subside. But I'm thankful for the unique brand of joy and satisfaction I feel, living this life I didn't expect to live.

After all, isn't this holiday about a child born in a stable to a Jewish teenager who claimed to be a virgin? I'm sure Mary wasn't really living the life she expected either.

I love the way Luke put it when he wrote in his Gospel:

But Mary treasured all these things and pondered them in her heart.



Me too, Mary. Me too....

Autism: The Numbers Speak for Themselves

It's one out of two in my family...



And we're far from alone...

Autism: Fast Forward Four Years

Just four years ago, everything changed for my family.

Diagnosis: Autism Spectrum Disorder

Come again? I gazed down at my blue-eyed toddler, sucking his thumb.

God, I loved that kid. His smell. His smile. My baby. The last I would have.

No known cause. No cure.

He lounged in the red all-terrain, super-cool mountain buggy. I liked to jog with it. I had researched it on-line, obsessing about finding just the right configuration.

I loathed the stupid travel system stroller I had used with his sister. I was a novice when I ordered it. It was way too heavy. Way too complicated. This model was light. Easy to manipulate. I had it all figured out, this mothering thing..

Jack was happy sitting in it. He liked to go, go, go…Gazing out at the great big world whizzing by.

Scribble. Scribble..

I couldn't comprehend the gibberish the hurried neurologist was writing and the glib delivery of it all.

And I just knew he was dead-wrong.

No way.

No known cause.

No cure.

Not my baby.

Hot, heavy tears rolled down my cheeks and splashed on the page.

No known cause. That’s what he wrote.

Really? My head swirled in confusion. The words now smudged with my tears.

No cure. A life sentence delivered via a four by six memo pad.

No way.

Not Jack.

Autopilot on, I kissed Jack’s sweet, warm head and wheeled the fancy red stroller out the door of the examination room, navigating the cubicles, bathed in florescent light …

and despite my best efforts, fell apart.

Calm, collected, Judith ... Lip gloss still perfect. Standing up straight. Pushing forward.

Spontaneously combusting...

We would never be the same.

Dammit.

Jack had just been diagnosed with autism.

He would very likely end up institutionalized.

Institutionalized.

I just couldn’t bear it.

No known cause.

No cure.

$50 copay. Just come back in four months so we can tell you the same thing again.

No hope.

Your child has autism. Yes, it’s severe.

No known cause.

No words. No friends. No independence. No answers.

No cure.

No hope.

No. No. No.

Four years later, the red stroller hangs on the wall in the garage. Stroller-cruising has now been replaced with an IEP goal of “riding a two-wheeler with training wheels across the gym... twice…”

At age six, Jack can now spontaneously say “I want cookie.” He runs into the bathroom when the urge hits.

He eats a variety of foods. In fact, I almost drove my car off the road the first time I gazed into my rearview and saw him stuffing a chicken nugget into his mouth.

He gives juicy kisses.

He whispers … “I love you..”

He means it.

He’s grown bigger. And he's so much better. Thank God.

We've pushed through. In spite of the dire predictions of the neurologist, we've put one foot in front of the other, believing that there are answers. We've found treatments that have dramatically improved Jack's quality of life. We've assembled a team of educators, medical doctors and therapists who operate on never-ending hope, incredible expertise and a commitment to individuals with autism that is truly inspirational.

The heartless neuro has long been fired.

Jack's a happy dude.. See for yourself.

And four years later, according to a report released just today by the Center for Disease Control, the number of kids like him with an autism diagnosis has grown rapidly too.

Autism Spectrum disorder is now diagnosed in:

1 out of every 110 children.

1 in 70 boys.

750,000 children in the U.S. alone.

Yet some things remain the same

Still no known cause.

No cure.

If only the federal government could find the wherewithal to push through.

Stand up straight. Navigate.

Work to find the answers the millions of people impacted by autism need and deserve, not later, but now.

No reason to stop hoping. The sweet boy in the red mountain buggy is living proof of that.