The Dance

The past few days have left me a little bewildered and frustrated.

JT is suddenly on edge, the past two days having 'episodes' at school. By episodes, I mean meltdowns or tantrums. Of course, the two are *completely* different, but strange that they crop up together. Traveling friends I suppose.

Then this morning, he was in a fantastic mood... suddenly flipping into a meltdown mess, completely inconsolable and irate.

These don't last a long time - maybe 5-10 min - and he's having 1 a day. But I'm still freaking out. There's always that panic... what if we stay here?

These behavioral backslides are common here... part of the autism 'dance'.

We move forward, then cha-cha back in an area, just to move forward again at some point. Always moving, sometimes forward, others backward, and sometimes things just shift left or right. But we're always moving.

I'm praying we figure out why Mr. JT is upset soon. Is it his sleep issues? The visitors last week? His allergic reaction to their dog he had then? Transition to new things? Growth spurt? Getting sick? I checked, no full moon to blame it on this time, so that's out...

Most likely we'll never know. The dance changes right as you start to figure out the steps.

I've never liked dancing much. I was a runner - point A to point B in the shortest amount of time = WIN! Dancing was a whole lot of steps just to get to an end... seemed like a lot of energy to burn to get to point B.

Yet here I am, dancing every day.

My feet are tired.

The pigeon was right!

"There's a good chance he'll never talk," the diagnostic team informed me with sad eyes, in March of 2008.
-At 3 years 3 days old, JT proved them wrong.

"I doubt he'll ever potty train," I lamented frequently to my husband.
- At 5 years 4 months old, JT started using the potty, and never looked back.

Other 'never's' that turned out to be false:
- be able to go shopping with me.
- behave at school.
- care what I say.
- want to be around us.
- want friends.
- pedal a bike.
- have a favorite anything.

I suppose the single most important thing this journey has taught me is never say never.

Perhaps I should take these words to heart (from one of my favorite childhood movies, no less!):

From An American Tail Movie Soundtrack:

Never Say Never

"Never say never,what ever you do
Never say never,my friend
(But I real...)
If you be that,your dream will come true.
They will come true in the end.
(But I...)
Keep up your courage,don't ever despair
Take heart and then count to ten
Hope for the best
Work for the rest and never say never again."

"Never say never,whatever you do
Never say never to me
If you be,if you come shining through
That's how it's gonna be
"Perfect"
Remember to look on the bright side
Until then never say never again."

Wiser words have never been spoken by a pigeon. Hat's off to you, Henri. :)

Literally hilarious...

JT says a lot of things that are very literal, and very, very funny.

Tonight at bedtime I was trying to adjust the volume on his television. I accidentally hit the tv/video (input) button, switching Spongebob off.

I said, "Oh no, I screwed up!"

From his bed, JT huffed, "NO MOMMY!!! SCREW IT DOWN!!!"

That is, technically, the opposite of screwing it up :)

OH NO! MY NOSE!

JT was saying that in the living room as I was getting everything together before we go pick The Hubs up at work.

I went in to see what was going on.

He had shoved neon orange playdoh up his nose.

Happy tears.

A few weeks ago, Audrey's teacher sent me an email, closing with, "I hope to see you at our End of Year Celebration! The kids are so excited about presenting their projects."

I thought about last year, The Hubs videoing Audrey's K graduation because I had to pick up JT and stay at home with him. There was no way he would have remotely behaved there. In fact, every 'celebration' of Audrey's we had to alternate last year so that one of us could go and one could be with JT.

Then I realized, this year is different. JT is doing a lot that he couldn't last year. We can go places, and he's fine.

I decided this year, he would go.

Fast forward to yesterday.

Audrey: Mom, we're working on a big project at school.
Me: Really? Your project for the end of year celebration?
Audrey: Yep. It's all about the most special person to us.
Me: That's a pretty cool project...
Audrey: Guess who I chose?
Me: Who?
Audrey: I chose JTmy. It's all about him.


Of course, I was so excited - what an amazingly sweet moment... She loves, loves, loves her brother.

Then I got to tell her JT gets to come this year to her celebration. She was unbelievably happy. She's excited to present her special person project, to show him off to her friends, she's excited just because he gets to be there.


This qualifies as one of the most special moments in my life. My son can finally attend his sister's ceremony, and how fitting that her presentation was in his honor.


As far as the day of, The Hubs will have the camera, and I will be sobbing into tissues. But instead of crying because we missed another event, this time, I can cry happy tears.

Freedom!

I think few people understand, truly, how isolating autism can be to an entire family.

It's not just that no one understands autism - it's that, literally, leaving your house is a nightmare.

JT would freak out anywhere we went. Grocery stores. Restaurants. Doctors offices.

We're talking, full-on meltdown, screaming, kicking, biting, fight-or-flight mode type stuff. Long gone, inconsolable stuff. People staring at you and whispering stuff. People outright saying things about my parenting, about how awful my son was (yes, I had, on more than one occasion, people out loud refer to my son as 'bad' or worse).

It broke me eventually.

It was hard enough getting him out, let alone braving the people who were so cruel.

Lately, though, a shift in JT - a HUGE shift - made me get back up and try again.

Guess what?

JT is awesome, that's what.

He goes shopping with me, no fits. He goes to the zoo, no fits. He goes to restaurants, no fits.

Not perfect behavior, but oh my goodness MANAGEABLE.

We can go out - as a family! - and have a great time.

I've signed up for those cute little Lowe's and Home Depot classes. We're planning family weekends.

I've never known what it feels like to do family things and just enjoy them... It's fantastic.

Zoo Time!

We went to the NC Zoo yesterday in Asheboro.

We all had SO much fun - it's a beautiful zoo, the animals have tons of space, and it wasn't too hot or busy that it was uncomfortable.

Some funnies and cool stuff:
JT caught a giant black ant. He named it 'my ant' (haha!!!) and carried it around all day. He eventually killed it (not on purpose), and was pretty sad 'mine ant dead'. He keeps telling us 'Ant at home, byebye mine ant.' and other funny things.

While looking at a lemur exhibit, JT found frogs. He was crouched on a bridge looking down on the other side, and started saying frogs and ribbit. It was really funny, he attracted a giant crowd of kids who apparently also felt that frogs were way cooler than ring-tailed lemurs!

He picked out a hat in the gift shop - as in, had to have it - and put it on the counter to pay when we were leaving. It was really cool to see him get that we had to pay, he would get it back, and then he could have it.


Also, about 1/3 of the way down, there's a pic of JT standing in front of a plexiglass money donation stand. He was saying "MY MONEY" and "Mr. Krabs' money" and then just "Money money money!!!" The kids coming in were cracking up!

A little after that, there's a pic of JT and Audrey climbing on one of those silver binocular pay-to-view things... JT was convinced that it was a robot. The eyeholes do look like eyes, and the center flat part looked like a nose. Too funny...

Here are a ton of pics... Check out the ones of JT with his ant (his hands clasped). He is one happy kid with his friend 'My ant' :)


Picasa pics: NC Zoo 5/1/11.