Working up the nerve

We decided to bring the whole family to the Burnsville Fire Muster this afternoon.  It's a little local carnival and firetruck celebration.  It's right down the street from us, so we end up going almost every year.

We knew we wouldn't be staying long with the boys, so I debated.

"Should I bring my camera?"

Mark rolled his eyes a bit and said "You know if you don't, you'll wish you had."

And of course he was right, so I flung the strap around my neck and off we went.

AJ stared longingly and kept trying to break free of my hold to run over to see the Merry Go Round, so I asked him "do you want to ride the Merry Go Round, AJ?"  And he replied "Yes!" with enthusiasm.  So we got some ride tickets and he chose a horse right next to Aliza.  For a few seconds.  Then he switched to a bench.

 

For some reason once he was on there, it didn't seem to thrill him.  You know what was great, though?  Watching Zack take a turn.

 

 

 

Zack was at his limit of fun after that, so he and Mark went home.  AJ, Aliza and I stayed awhile and Aliza and I got brave and thought we'd see if AJ could handle this big pirate climbing contraption.  It was all ramps to run on, rope ladders, slides, and places to jump.  All things AJ can do.  So we handed over ride tickets and gave it a shot.

 

 



 

But after he got to the top of this rope ladder, AJ got kind of stuck.  He couldn't bring himself to go down the slide.  He wanted to badly, and he watched a dozen other kids slide down, but every time he got near it and Aliza tried to help him, he backed out.

 

She tried forcing him to go down the slide, because we both knew he'd love it, if he'd just DO it.  But he's wily and slippery when he doesn't want to be caught, and he kept wiggling away from her.  So I went up there and tried to get him to come back down the rope ladder to me.  He couldn't do that either.

 

So my resume of special skills now includes climbing a rope ladder with a giant camera dangling around my neck and holding my wallet in one hand.  It was a little more adventure than I'd planned on.  But I managed to drag him back down the rope ladder.

 

The rest of the time we were there he kept looking back, saying "slide?"  I knew he wanted to do it, but it's not like we were at the neighborhood park - he can't just bounce around up there for half the afternoon while he works up the nerve to do it.  When you pay to go on these things, they kind of want to you hustle through, and make room for the next paying customers.

I felt bad for him, but he later he picked a rubber ducky from a big pool and won just that - a rubber ducky.  We walked home and he held up his prize and announced repeatedly, "Look, I got a duck!"

 

So I think he was happy.

The Doors on the Bus....

School starts in two days. AJ has had a fascination with school buses for the past several years. So the first day of school is exciting for him for all kinds of reasons.

His favorite You Tube videos are of school buses. If you search for "first day of school," you'll find dozens of videos of kids' getting on the bus.

Lately I've even seen him watching technical videos that look like they are advertisements or promos of some sort, for school bus manufacturers. They go through the bus, highlighting all the details and special features.

But, the bus doors opening and closing - that's the best part. He'll replay the few seconds of the door opening and closing over and over.

So getting AJ onto and off of the school bus every day is a bit of a challenge. Because he wants to open and close the doors really, really bad. I'm mentally preparing myself for the routine we followed last year.

He gets on in the morning without too much trouble. Sometimes he stops, grabs the door handle, and yanks it back and forth. But most of the time he's able to keep going and sit in his seat.

Getting off the bus after school is much more difficult. Both the bus driver and I have to be ready to block AJ from grabbing the handle and slamming the bus doors open and closed.

We get Zack off first, because Zack is the one I can trust to get right off the bus and go straight into the house. Zack's got a mission, and that is to drop his backpack and jacket, find the iPad and begin playing Super Why as quickly as possible.

Then we brace ourselves and AJ is released from his seat belt. He jumps up and runs for the door handle. I mean, barrels past the bus driver and I. Usually one of us catches him and blocks him. I hold both his arms and walk him toward the door, and since he can't get his arms free he'll reach over with his foot, and try to push the handle that way. Quite determined, the boy is.

Sometimes, if we aren't quick enough (or if I'm distracted because Zack broke his routine), he'll sit in the bus driver's seat and push buttons and pull levers. That's the real danger. Opening and closing the door is pretty harmless as long as no one is standing there, but he could cause real trouble in the driver's seat.

The bus driver for summer school was really good about letting AJ open and close the doors a couple of times when he got off. I hope the new driver we get next week is just like that. And as long as we make sure no one's in the way and he can't get to any of the other bus controls, what's the harm in letting him?

Late Night with AJ

If it's true that everybody wants to be friends with the funny guy, AJ is going to be very popular one day soon.  The kid's a stitch.

This afternoon at Courage Center, AJ went back to work with Zack's therapist.  She doesn't know them well enough to know the difference, and I wasn't paying attention with who went with whom.  So no one noticed at first.  The therapist did get suspicious within a couple of minutes though, and she asked him "Are you Zack?  Or are you AJ?"

And AJ replied "I Zack."  So the error went on for a few more minutes until we all figured out what he'd done.

Then tonight after dinner, AJ was watching something on the iPad.  He left for a couple of minutes, and the iPad shut off automatically, as it tends to do when it's left idle.  This happens at least a dozen times a day.

AJ returned, looked down at the black screen, and exclaimed in mock horror, "Oh no, it's gone!"

An Anxious Night

AJ is having a tough time tonight.  It all started right after school, when the bus arrived several minutes early, which wouldn't be a problem except that on Tuesdays I pick up Aliza and a few other neighbor kids at their school.  One of them is a crossing guard, so we have to wait a few minutes for him to finish up his duties before we can drive the 6 blocks back home.  (Sidenote -- in case you're thinking, 6 blocks - why can't they walk home?  There are two reasons.  1.  It's winter and pretty cold, and 2. a couple of the kids are borderline-too young to walk home.) 

Today as I turned the corner to go down our street, car full of kids, I saw the boys' bus.  Sitting outside our house.  Early. 

I drove right by and dropped off a child who lives down the street, turned around, and came back toward our house.

Well, the bus driver said the boys were fine.  And they were, to the naked, untrained, eye.

They had to wait for me, though. I don't know how long.  But they had to wait, and mom didn't come walking down the driveway, right as the bus drove up, like always.  They had to sit there.  Nobody came.  For probably a few minutes.

And AJ's anxiety bubbled over.  He came into the house, took off his coat and boots, and promptly began chewing on his shirt.

Doritos helped his mood, somewhat.

So after dinner, I decided to bring AJ upstairs for a bath.  I slung him over my shoulder to cheer him up.  He usually thinks that's pretty fun.

Tonight, however, I managed to bang his head on the ceiling.

He doesn't have any marks on his head.  He looks fine.  But oh, the huge, teary, brown eyes he fixed on me.

I managed to get him bathed and put to bed without injuring him any further.

5000 Kisses

I know all the other blog people are doing "year-in-review" posts right now, but I'm not sure anybody but me is really interested in that, and I don't have time to sit and reminisce through the past year's posts right now anyway.

So instead I'm going to wrap up 2011 by telling you about the super cute thing AJ started doing this week.

I've always kissed my children a lot.  They sit on my lap and I kiss their little heads all over.  If 5000 kisses were a cure, I'd have wiped out that Fragile X before their second birthday.

So it was about the cutest thing ever, when AJ started giving out his own kisses.

Like a lot of kids with autism and/or Fragile X Syndrome, he has his own way of doing it.  He leans over and gently touches me with the top of his head, and says, "Mmmwaah."

They are the best kisses ever.

Wishing you the happiest of new years....

The Escalator Ride

We went to the mall this morning, just to walk around.

If you go before any stores open, it's nice and quiet and empty.   A great place to let little monkeys run around.

After the stores opened, Aliza wanted to look in a little toy store.  It's right by some escalators.  Which are basically an amusement park ride, as far as AJ is concerned.  He did his imitation of a puppy (i.e., whining) and strained toward them, as I held hard to his hand.

Then I decided, what the heck.  Stores had only been open for about 10 minutes.  There was nobody around.

I told Aliza we were going to ride the escalator.  I can see inside the toy store the entire time.  So she can stay there and look at toys.  I abandoned our stroller at the top of the escalator and took a boy by each hand, and we stepped onto the down escalator.

AJ squealed and laughed, as if we were on the rollercoaster.  As we got close to the bottom I warned the boys -

"okay we're almost at the bottom, get ready."

And AJ looked down where the escalator stairs magically flatten out and disappear, and he waved said wistfully "buh- bye, stairs.  buh-bye."

We turned around and went right back up.   The "up" was just as exciting as the "down."

We rode the escalator ride three times, always watching the stairs disappear, waving and telling them "buh-bye, stairs!"

Seriously, could that kid BE any cuter?

"Good job, buddy!"

This is what AJ heard repeatedly the past couple of days as he participated in the Project on Early Word Learning in FXS and autism at the Waisman Center.  All weekend, while at the Waisman, at the hotel, in the pool, at McDonald's, he repeated told himself, me, and anyone else who might have been paying attention, "good job buddy!"
And he DID do a good job!

Really he did.  The researcher who interviewed me said they got a lot of great data from him.  We got done early every day, as he was more cooperative than a lot of kids, I guess.  I thought he might be, because a lot of the things they asked him to do are very similar to the activities he performs in his ABA therapy every day.

Guess what?  He cooperated for the hearing test.  Apparently the way it works is, they put up a picture of a rabbit on one side of the room and a dog on the other side.  AJ sat in the middle. Then there was a squeeking sound coming from the side where the rabbit was, and he looked toward the rabbit.  (I did wonder to myself, do rabbits squeek?  Maybe people who know rabbits know these things. Anyway, AJ knew that they squeek.  Or maybe he just turned in the direction of the sound and thought the same thing I did -- do rabbits squeek?)

When we weren't working at the Waisman Center, we mostly just stayed at the hotel.  AJ needed to unwind, and he does that best in front of a computer where he can go to either http://www.nickjr.com/ or You Tube and watch his videos.

We did go swimming a couple of times, but as I mentioned in this post, he wasn't too keen on swimming with mom.  I tried to be fun, but it just wasn't the same as having his siblings and/or other kids around.  And both times we went to the pool, we were the only ones there.

One afternoon I decided we needed a little fresh air, so I dragged him out to see the lake, and to the University of Wisconsin/Madison campus.   He hated every second of that.  We shopped for t-shirts for the family at the U of W bookstore, and he bit my hand the whole time.  After that we ran through a grocery store quick so I could get a few supplies for the hotel room and for the trip home, and he chewed on my hand throughout that store too, so that by the time we left my knuckle was bloody.  He was very stressed about the shopping.  He was not interested in seeing the lake.  He wanted to do nothing but hang out in the hotel room.  So, that's mostly what we did, and I got very few pictures.  This is about it.

Zack and AJ did not have the joyful reunion you might have expected.  They acknowledged each other when we got home, and then both went about their business.  Zack did seem to miss me, though.  Maybe he's on his way to being a momma's boy too.

There was some serious slacking (notice how I worded that in a way that implied blame absolutely nowhere) on Zack's bottle-to-sippy-cup transition, both while I was gone and a few days before I was gone.  So it's time to get cracking.

Brief Thoughts

High and low points so far on our trip to Madison for the language study:

~All my kids have sensitive tummies.  I should always have a roll of paper towels in the car.  Forever.  Always.

~When a kid throws up and then cries....it's really hard not to throw up and cry right along with them.

~Swimming in a pool with mom just isn't as fun as it is with other kids.  If AJ could talk in full sentences, he'd have told me this.

~Neither Zack nor AJ seems very upset so far about their being separated.  Neither of them was all that into talking or looking at each other when we Skyped today.  We will try again tomorrow, but so far it looks like I laid awake worrying about the separation for nothing.  Of course, it's just been one day....now we have the weekend coming up, where Zack doesn't have school and therapy to distract from his brother's absence.

~You may think a peanut butter and jelly sandwich is better on ciabatta bread than on regular toast, but AJ would not agree with that.

~This area of Madison is full of students who wear all black and dart across streets after dark.  They don't bother with crosswalks.  I would have taken pictures to show the all-black figures had I not been so worried about trying not to kill them.

~AJ functions pretty well when I'm not in the room.  When I'm there, he whines and hides behind me.  When I leave, he sits down and gets down to business.

~Even so, I'm convinced he can see me through that window/mirror.  You know, the one where in his room it looks like a mirror, but in the room next door, it's a window and I can see what they are doing in there.  He keeps coming over to the "mirror" and pointing and babbling.  He knows that's no ordinary mirror.

~When he's working, I'm overcome with pride at how adorable, hilarious and brilliant (well, you know what I mean by that) he is.  I can't stop smiling.  And I can't help but notice how the researchers working with him are pretty serious, writing things down, and not at all engrossed in his adorable-ness like I am.

~Tomorrow they are going to attempt a audiology test on AJ.  He has never cooperated with a hearing test in his life.  So this ought to be entertaining.

Talking Zack

AJ is the superstar of speech advancement, lately.  My Zachary is a man of few words.

But the words he does say are meaningful, from the heart, and even show the little comedian blossoming in him.

Yesterday he came upstairs from the basement where he was having ABA therapy, and he outran his therapist by about a mile, shooting past the kitchen where he was supposed to be headed, darting up another flight of stairs and pounding down the hall to AJ's bedroom where he was having ABA therapy.  He slammed AJ's door shut.  Just call him Captain Subtle.

His therapist went upstairs after him, opened AJ's door, and Zack looked over at her, smiled, and said "heh-woh."

It strikes me that this might be one of those "you had to be there" instances.  Maybe you did have to be there to see the cute "you got me" smile and to hear his game show host tone of voice.  I actually wasn't there.  But I've seen the smile, and I've heard the tone of voice, so I can readily imagine how cute it was.

Yesterday Lily got into a cat fight in the backyard -- a neighbor's cat was back there and the two of them yowled and wrestled it out for a few minutes before we spotted them and I broke it up.  Lily seemed fine but she ran downstairs to hide, mostly, I think, just to nurse her wounded pride.  I let her be most of the afternoon but then decided I needed to make certain she was okay, so I ducked around the furnace and laundry area with a flashlight, calling her.  She's a cat that thinks she's a dog -- she usually comes when I call her.  So when she didn't come out and I couldn't even spot her...

anyway I digress.

Zack was back in his little orange chair learning how to "wait" 20 seconds (you can't imagine how hard it is for him to sit there and do absolutely nothing for 20 seconds), when I walked through the room.  I waved at him and he said "buh-bye, mom."  Crystal clearly.

I get so used to hearing babbley-chittery-mumblety-nonsense from these boys, and it's just a thrill to hear real, meaningful, appropriate, clear words come out of their mouths.  Words and phrases you'd hear from a typical boy.  Words that show that they are understanding what they hear, and know the right thing to say in the right situation.  Phrases that show they are getting more social and interactive with people.  All things I took for granted that kids learned, before I knew these boys.

And my AJ -- well he doesn't just watch Wiggles videos on You Tube anymore.  Today he played a Moose and Zee game on http://www.nickjr.com/ where he had to match up the lower case letter with the upper case letter.  And he could do it.  And he liked it.

Well he liked it, because after he played one round of the game, I let him go back to You Tube.  But only a few times did I have to point out to him which upper case letter went with which lower case one.  And he came back to play the game again, on his own accord.  I figure, if he's going to use the computer, might as well get him to play an interactive game with it so it's at least a little bit educational.

And now I have to go back downstairs and continue the search for Lily.  Haven't seen her in about 22 hours now.  Starting to worry about what I'll find when I do find her.

A Sad Boy

I don't know what to think about AJ.  I knew he was the more sensitive of the two and I knew he might have more trouble than Zack, adjusting to kindergarten.

Then again sometimes though I wonder if Zack is equally as sensitive, and just not as communicative as AJ, so I actually have no idea how Zack is feeling most of the time.

That's another subject entirely.

Anyway this morning, I could tell AJ was anxious the way he was circling around by the front door, looking out the window, biting his sleeves.  I turned on his computer and brought up the Monkey Dance and then he did his usual thing of watching that, over and over.  So I thought he was okay.  Then I put shoes and coats on both boys and the bus arrived, and he came outside more or less willingly.

As I buckled his seat belt on I saw the look on his face.  Huge, watery eyes.  Anxious aggression and violence I am used to handling; but this complete heartbreaking sorrow is going to kill me slowly.

Aliza and I stood in the driveway waving and AJ watched us out the window, silently, unmoving, but with those big brown eyes staring at me like I was sending him off to war.

I called and left a message for the autism teacher who I know gets them off the bus.  I'm going to call again in a little while.  And I'm going to have that image of AJ's sad little face in my head, all day.

The Monkey Dance

I don't know who this adorable kid is, but I'd like to thank him and his mom for his great rendition of The Monkey Dance on You Tube.  AJ has been watching it a couple dozen times a day.

Here he is, working the laptop all by himself.  I still find it amazing that he can do this.  He's so sure of himself.  I know I've said it before but it merits repeating -- I never would have guessed even a year ago that he'd be doing this now.

I'm not thrilled about the Dorito smudges all over the keyboard and mouse, but I guess that's what Clorox wipes are for.

And look at this -- see how he's sitting next to the computer instead of in front of it? 

Once I got over my horror of the fact that he'd pushed the screen all the way back, I noticed the objects on the screen are facing HIM -- to the side.

I tried to get a picture of it, but I couldn't get a good angle.  Plus I'm still trying to keep my jaw off the floor.  He ROTATED THE SCREEN all by himself!

I would never believe he did it purposely if I hadn't seen him do it once before.  We laughed and laughed, assuming he'd randomly pounded an odd combination of keys and accidentally caused the screen to rotate.  BTW if you Google "computer screen upside down" you can find instructions on how to bring it back to normal.  It's control-alt-arrow.

I don't know what to think.  I am not sure this was random and accidental.  I mean, it's happened twice now.

I look at his face and wonder.....is there a little genius locked in there, unable to communicate to me all that he knows?