Autism: Howl-o-ween

Okay. So it didn't go so well this year ...

Click HERE to see more. (Heed my warning. This is not for the faint of heart...)

How were your little ghosts and goblins? Did you medicate yourself with fun size candy bars like this autism mama did? (Blek.)

Dish please.

Autism: Um .. Excuse Me ... Come Again?

“This kid is moving…”

Those were the words Jack’s neuropsychologist, Dr. C, said over and over today at our annual feedback session. (He has just finished up a round of extensive evaluations on Jack…Our IEP meeting is in a couple of weeks.)

I kept waiting for him to get to the bad part … the inevitable “but” that always ends up in these conversations. But the “but” never came. Instead he used words like “remarkable” and “dramatic.”

He showed me on paper where Jack was fifteen months ago when he first saw him. (The kid just couldn’t do anything.) But after a year of quality 1:1 ABA at Nashoba, he is progressing faster than we ever thought possible.

Yes, he is five and still essentially nonverbal. But he is finding amazing ways to communicate through gesturing and PECS. In the last year he has progressed from testing at a 6-12 month old developmental age to now a 2 ½ to 3 year-old. And Dr. C, who last year somberly told me to prepare myself for the worst, said his estimates were conservative. He also told me I might need to start altering the way I describe Jack to others …

Dare I say the word? Moderate?

Jack surprised us all. He is living proof that quality ABA intervention truly can make the difference in the life of a child.

Is he out of the woods? Not at all.

But the sun is shining through the trees and the future is looking brighter..

This kid is moving alright … And his mom is crying happy tears today.

Autism: October Surprise

Saturday morning on the couch in my pajamas. I’m sipping coffee and enjoying the luxury of a weekend that has no appointments, events or obligations. I hope to get some work done, laptop cradled on my flannel-laden knees, running Jack to the potty every forty minutes.

Pee. Flush. Cookie. Smiles.

The last couple of months have been a whirlwind. I’ve gone back to work full time which has thrown our family life akilter. We’ll adjust, but it’s very much like starting a long, long run. The side stitches can be painful, but if you just push through them they’ll subside.

Or at least that’s what I’m choosing to tell myself.

This time of year is just busy in general. It’s IEP time for Jack and that means a flurry of appointments with all of the “ologists.” In the last two weeks we’ve been to the neurologist, cardiologist and the neuropsychologist.. (We’ve also been to the pediatrician, but that doesn’t jive with the whole ologist theme…)

In the past I’ve attempted to swallow the lump in my throat, clutched Jack’s warm hand and walked him into ologist’s office after ologist’s office with the same thought running through my head:

How did we get here?

This wasn’t in the whole happily-ever-after plan.

I.Am.So.Alone.

Looking back over the last couple of appointment-filled weeks, I haven’t felt that way. At all. The side stitch is subsiding. I haven’t shed a single tear. The cloud of foggy shock lifted at some point. The ologists have become extended family. The familiarity is a source of comfort.

October 11th, the third anniversary of Jack’s brutal autism diagnosis came and went without a thought. At the time, it knocked me to my knees. Three Octobers later, I’m thinking a corner has been turned.

We’re moving into year four. Finding our pace I suppose.

Do I think the emotionally trying times are gone? I wish I did, but I know better than that.

Do I still long for a cure for Jack’s severe challenges? Every day.

Do I still worry about what will happen to Jack when I am gone? Every moment.

Do I still long for words from that sweet mouth?

What I wouldn’t give.

But I am reminded that the journey has made our family stronger. We’ve built muscle and stamina. We're better as opposed to bitter. I’m at peace in my pajamas with my cup of coffee. Like Susan Senator always says, all happy families are not alike.

I think I’ll head out in a little while for a nice, long run.

Autism: Jacket Weather

There was a chill in the air as Jack darted past me through the open front door. Our sweet neighbor kids from next door wanted to play with Amy. As I grabbed Daisy, our crazy golden retriever’s collar and simultaneously negotiated play time, Jack saw his opening.

In a split second he was gone.

The kids bounded in and I rushed out, around the corner of the house to the back, ominous headlines scrolling across my brain.

There he was. Short sleeves. Bare feet. Perched in the top of the play set, spinning the plastic wheel bolted into the red wood.

Smiling.

It is postcard beautiful here in New England these days. And it warms my heart that the kids want to be out, breathing in the crisp autumn air. Screaming, running full speed … spinning the wheel atop the play set.

But it’s also getting colder. I’ve already hit Lands End, buying the polar fleece pullovers and light jackets that will see the kids through fall.

I ran inside to quickly grab Jack’s new jacket. I grabbed his Crocs too and rushed back out.

Shoes first, I thought, so I reached up and placed them in front of his stubby feet. He grabbed them, grinned at me, and promptly tossed them over the railing to the ground.

Grrr…

I decided to just roll with it, so I handed him the jacket.

It was one of those moments I have lived over and over and over the last five years.

I handed him his jacket, but I knew that I would absolutely have to climb up and help him. (For some inherent reason, I always have to provide the opportunity for him to surprise me…. To succeed in doing something that I know he can’t do.)

Assume competence.

Jack grabbed the jacket, promptly and appropriately rearranged it, put in his left arm, swung it around and groped for the right sleeve.

The kid made it look easy.

After years and years, exposure, exposure, exposure, repetition, repetition, repetition …

He made it look easy.

Progress. It’s immediately and completely intoxicating. The warmth of it overtook me, wrapping itself around me like cashmere.

I smiled. Jack smiled … and kept on spinning.

Autism: His Sister's Keeper

All of the people around us they say
Can they be that close
Just let me state for the record
We're giving love in a family dose

~Sister Sledge

Andy shot the Superdad glare across the room at me the other night. A shiver went down my spine. Superdad glares are never good...

Why the glare? It seems Amy had succeeded in tripping me up in one of the oldest parent-child booby traps in the book: playing us against each other.

Like most parents I know, Andy and I have an unwritten rule. We've got each other's back. Fighting about any childrearing differences is a behind-the-scenes affair. It's the whole united we stand, divided we fall parental approach.

But Amy, she's a smart one. She targeted me at a moment of total weakness. I was busy answering e-mail number 10,122 when she sauntered into the office and asked ever so sweetly if she could have a sleepover with her brother.

"Sure ..." I mumbled as I hit send.

What she failed to mention, however, was that her dad had already given her the big N-O. And I hadn't checked to see if she had already asked her dad, which is standard operating procedure around our house.

To be honest, I really like it when they sleep together. It's sweet. I failed to see what the big deal was. But when Andy shed some light on the situation later, he explained that the reason Amy wanted to sleep with Jack wasn't really a noble, sweet, sisterly sort of thing.

Her motivation was fear. She was scared. She'd been watching too much Scooby Doo. And she did't want to sleep alone in her room. She wanted to be with someone...anyone....

The little guy across the hall in the dinosaur pajamas would do just fine.

Of course, Andy thought she needed to tough it out. (I know, I know ... he's right. Tougher is better.) But I felt the need to make an exception, which honestly is rare for me.

It felt good to me that in this case, for the first time ever ...

JACK COULD DO SOMETHING FOR AMY.

He needs that. She needs that.


Okay, who am I kidding..

I need that.

So when I explained that to my tough-love husband, it was an easy sell. He quickly and completely got it.

Amy and Jack had their sleepover. And in this case, the little brother in the dinosaur pajamas got to be the supportive sib for a change.

And we all had sweet, sweet dreams...

******

The Early Show on CBS completely got it this past week as well. Do yourself a favor and check out their piece on autism and its impact on siblings:

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