Friday, June 19, 2009

What NoOne Sees

It's like a delayed reaction.

It was 2 years ago I heard the words, "He has autism".
They were talking about my son.
MY son. . . .my baby. My perfect little baby. My first born. I carried him for 9 months. I labored and delivered him. . . I nursed him, rocked him, snuggled him, sang to him, loved him and dreamed for him.

Autism. Autism? What does that mean? I know what it is- what does it mean to me? to us? to him?

He had just turned 3. He was so smart. He seemed to do everything on time. He laughed, smiled, cooed. He knew all his letters, shapes, and colors at 20 months. He could say words like “puffer fish” and “escalator” before his second birthday. Sure, he was obsessed with storm drains and elevators and vents. “He’s going to be an engineer” we would say. But, the flapping. . .. The stimming. . . This can’t be normal. That nagging, cruel voice in the back of my head. It wouldn’t go away. “Maybe it’s more”.

And it was more. . . More than I even knew at the time. They told me he had autism. . . and I just nodded. We’ll deal with it and he will be fine.

Let’s GO! What do we do first?! I’ll make the calls, we’ll see the specialists, we’ll start the therapy. We’ll be fine. He’ll be fine. This doesn’t have to change anything. This doesn’t have to change him. This doesn’t have to mean anything. This doesn’t have to be- - autism.

I couldn’t sleep. That voice in my head. . 2am. . .autism. . . . 4 am. . .autism. . . . SHUT UP! Give me back my little boy! I look at him and now I hear, “autism”.

He started therapy and I thought that would make it all better. Twenty hours a week we worked with the therapist. But 24/7 I struggled with how to make it work better. It took us 2 months to teach him how to answer a simple question with a “yes” or a “no”. Most moms don’t blink when their3.5 year old kid asks for juice. .. I spent my days just wishing he would. And he did. . .that and so much more. We were thrilled. I thought that was the end. Everyone told me- “he’s doing so much better!” and “you’d never know. . .”

But I know. . .

And now. . . It’s hitting me. Now the tears are coming. He’s 5 now. He’s not “cured”. He has made incredible progress, but there are new obstacles I never thought would be here. New things to overcome. I’m not a bad mom. He’s not a bad kid. Don’t look at me that way. . . .don’t look at him that way.

He’s different. It’s becoming more obvious. I want to reach him. I want to reach deep inside of him and pull him out. But, he goes away. He goes far away and I can’t reach him. He’s my baby. We’ve been connected from the day his heart first began to beat. . .from the day he took his first breath. And I can’t reach him.

And now, my heart is finally breaking. It’s breaking for me. It’s breaking for him. It’s finally realizing
This isn’t over. He’ll have to fight. I’ll have to fight for him. This is just beginning.

Psalm 121
I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber;
Indeed he will neither slumber nor sleep.
The LORD watches over you—
the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night. The LORD will keep you from all harm—
he will watch over your life; the LORD will watch over your coming and going
both now and forevermore.