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.

Autism: Mail Call

I'm passing this information along from my Rhema's Hope blogger, autism mom, hero, friend, Jeneil.

The autism community is a tight, crazy, wonderful group of diverse human beings. Our kids are affected in many different ways. We fight with each other. We celebrate the hard-fought victories.

And above all, we hold each other up....no questions asked.

I know you are all incredibly busy. I know it's the holiday season.

But please ...I ask you to please honor her simple request.

******

Friends, I have a request.

During our last conversation, my husband casually mentioned on the phone that there’s this huge box – like the size of our kitchen table – in his unit in Iraq, and every day it’s filled with mail.

But there has not been one single piece of mail for him.

Sniff. I’m. so. bad.!!!!!!
.
As you are dropping beautiful holiday cards or family newsletters in the mail, would you address one to him??? If sending a card, all you have to do is put a stamp on it and drop it in the mailbox (-no need to go to the post office).

Believe me, he loves this stuff. He hasn’t lived in his hometown since he was eighteen, and he still receives the town’s 4-page newspaper and every Sunday church bulletin. And he actually reads them. (I’ll be boxing all those up and sending them to Iraq).

His address:
MAJ Brandon Russell
STT/HHC/HBCT/
3 IDFOB Sykes
APO AE 09351

(He told me what all those letters stand for. HBCT stands for “Heavy Brigade Combat Team.” Ugh. Sounds… heavy.)

Anyway.

Can you help a sista out?

*****

Yes we can, my sister ... Yes, we can...