Monday, June 30, 2008

Got $22K To Throw At A What If? Maybe?

Check out this news story.  Hey, let me fish around in my pocket…oh, there is that $22K!  I think I’ll spend it on a chamber that has, eh, some success in a single case. 

You know what, I’m thinking of actually going in a different direction – I’ll just rent for a few thousand a week. That seems to me like a much better investment.

Posted by Jerry in 16:00:51 | Permalink | Comments Off

Friday, June 27, 2008

Exhausting

When Maya does something that ‘she should know better’ than to do, I often think of it is as a game – high stakes for her, since she’s usually trying to exert some independence, push my buttons, test the waters, etc…

But with Demetrius, that can be such a hard thing to interpret.

This new TV in the office intoxicates him.  The locks on it are different than the locks on the TV downstairs – he can watch most of his DVDs on this TV because I can’t password lock the TV the same way. So if he puts in a G rated DVD, regardless of all the parental controls – it will play….because parental controls weren’t written to keep autistic kids from stemming…the codes were written to keep 13 year old boys from watching inappropriate content.

So for the past month, he has had one of his favorite DVDs, the Justice League Brave and the Bold, a total of four days. That’s because we take it away for a week, each time he sneaks it onto the new TV, without asking.  So yesterday, he gets it back, we tell him he can watch it on the downstairs TV, and then we find him upstairs watching it on the office TV without permission while not doing what he is supposed to.

Sigh.

What I am figuring out here is that he is actually evolving in terms of his stemming.  He no longer just has to stand and yelp and flap…he can sit and watch a video (without hitting buttons constantly for visual stemming). How do I know when he is and isn’t doing this? I’ll have to watch more closely. 

But I take the DVD away again for a week, and he got very upset.  “I just got it back!,” he whined, which is true, but he immediately did what he was not supposed to do.

How he manages to sneak into the office when it is open only for a few minutes without an adult in there is amazing to me.  It is truly impressive, but I’m irritated/frustrated/sad that I repeatedly have to take this video from him…

Of course, it isn’t nearly as bad as when he wants to watch Pixar Shorts….that brings on some serious, high voltage stemming….

Posted by Jerry in 15:51:45 | Permalink | Comments (2)

Thursday, June 26, 2008

Really Interesting Discussion On About.com

I read this on the Trib’s blog yesterday, and saw the About.com posting today. Yes, I think all the points made are totally relevant, but I don’t have the whole story, from at least what I’ve been able to find (if you have more, let me know)…

If we want to throw blame around (what’s the point)… don’t we have to put some of it on the parent traveling with the boy?

It is incumbent on all of us to at least be aware of the threshhold of our own children, and their ability to react and handle situations.  I am not judging at all here, but it seems to be that this might have been a subject that should have been vetted before it escalated.

God and everyone that knows me knows that I don’t do everything right in regards to managing Super D, but when we do travel with the kids (and we do a fair amount of flying) I almost always tell authority figures throughout the process that D is special needs.  Look, I promise you this, that if the boy was downs syndrome, with all the facial features so evident, that this flight attendant, most likely, would have approached the situation differently. As I’ve written repeatedly, our children don’t have those markers for others – we have to help them along the way…and it seems to be that this is exactly what is needed in this situation. 

Ms. Rudy hits on this, but there is some culpability here on the parents to make sure the calming toys/lovies are reachable (as stated) and that the parties that need to know, know that the child has disabilities/special needs. If that was conveyed up front to American Airlines, shame on them…but if not, we need to think about these types of things before we travel (Maddie does a great job writing about these things on her blog with her boys. So does Marla with Maize.)

What thinks you?

Posted by Jerry in 17:57:39 | Permalink | Comments (4)

Tuesday, June 24, 2008

A Big Change Of Mood Once You Look Out The Window

Last night the kids got in some BIG trouble.  Lets just say it involves everything from lying to nakedness.  Lots of crying in their rooms with closed doors and statements about running away.

During the packing of the materials for running away, Maya looked out her window and saw this crawling across our driveway:

Maya: Daddy, there is a huge black snake in our driveway! (Tears stopped immediately…..)

I look out the window saw it too and yelled, “KIM! WHERE IS BUDDY……”

So first thing is first, “Let’s look at it from the downstairs window”, and then lets look it up on the Web.  So when one searches ‘snakes Atlanta’, the Georgia Snake Removal Web site comes up.  Thank God that the snake leisurely scooting across my concrete slab looks exactly like the picture above, and is, if stretched out, about 2.5-3 feet long.  From the Web site:

Black Rat Snake (Elaphe Obsoleta)

(Large | 3.5 – 7 feet | non-venomous (Thank God!)

Notice the black body and the white underbelly and the continual lifting high of its head. This snake is found throughout the greater Atlanta area and is non-venomous This snake feeds on rodents and birds.

Whew.

What I find so funny is Maya’s reaction of interest (we then have a talk about snakes, what you do when you see one, etc…) while Kim basically wanted to crawl out of her skin.  The neighborhood saw a string of robberies last week (everyone who leaves the car out and unlocked or their garage doors open were basically hit), but Kim’s reaction to seeing a snake?  Much stronger and worse.  She was a hoot going out into the garage last night (like it could crawl under a closed door), and I bet she drove out of the driveway to vacation bible school with the kids at about Mach 8 this morning.  Pretty much this is the kind of snake you want around to eat rats and such…but man, is it big and black.

I’m going to name him Simon our neighborhood snake that is harmless but scares the bee-jesus out of everyone who sees him.

Assuming it’s a him.  I’m not gonna get close enough to find out otherwise.

Posted by Jerry in 14:18:00 | Permalink | Comments (2)

Monday, June 23, 2008

University of Louisville To Create Autism Center

I’d like to see more of these popping up in the news….
Posted by Jerry in 21:05:35 | Permalink | Comments Off

Greatest Pick Up Line Ever

A friend of mine was telling me about her three year old son, and how he really likes to hang out with older girls…and we debated on whether or not Maya would give him the time of day.  (Maya’s not one of those kids that really takes to ‘Mommy-ing’ other little kids…if the kid can keep up, great.  If not…come back when you can!)

She was telling me how smooth her son is with the ladies. For instance, at a birthday party last week, he went over to a 9 year old girl and sat down next to her.  When she finally acknolwedged he was alive he struck with the best line ever:

“So what is your favortie sea creature?”

Classic. I love it. Good, good stuff.

Posted by Jerry in 15:11:15 | Permalink | Comments Off

Sunday, June 22, 2008

Inspired By Watching Another


A nice moment watching TV between Maya and Demetrius

I had a race yesterday morning, afterwards I met Kim and the kids at IHOP for breakfast.

Demetrius had not had his medicine, so the clinking, clanking and white noise of the world’s busiest breakfast spot made getting through his pancakes more than a bit tough.

Of course, as always with the boy, a few bites in and he needed to head to the boys room. I took him and he hit a stall and began singing his song as he took care of business.

At the urinals was a boy with a cane hanging from the counter.  A couple of years older than Demetrius.  He had cerebral palsy, but he was going to the bathroom all by himself.  He had to drop his drawers down below his knees to keep his balance.  And when he was finished, he took a good minute plus just to pull his drawers back to the appropriate position.  He wobbled as he tried to keep his balance, and when finished, he grabbed the top of his cane and pulled himself over to the sinks.

He was focused, Demetrius was singing, and I was closely watching this boy.  He leaned on his cane and took one big step left.  He had a bit of a hard time turning the faucet on….he did, and then he went for the soap.  Now imagine having minimal control over your hands, which of course, are almost balled up – but he managed to get his palm of his right hand still – and with the other push the buttom to get soap.  I took a few long seconds – but he was successfu.

But my guess – it took a good three minutes to wash his hands.  Because he had such poor motor skills, it just took everything he had to wash the hands and between and around each finger.  He did it.  Then he had just as many problems with getting a paper towel.

I would say an exercise you and I take advantage of, and pay no attention to, each time we do it, took this poor boy about five minutes.  By then Demetrius had come out of the stall and washed his hands and we were heading back to the table.

I wondered, how many practice sessions had this boy had where he had wet himself trying to pee on his own, or cut his fingers trying to get soap out of the dispensers, or just for some reason or another, failed at peeing and washing his hands?  How frustrating was it for him, how depressing trying to just learn how to do this one simple exercise….but he was doing it at a restaurant by himself – and his parents were out there in the throng of tables with bacon, eggs and toast, trusting he could do it himself now.

I was inspired.  His body is as hard to work, I think, as Demetrius’ mind is for him at times.  Yet he’s mastered this enough to say he can do it himself.  Hardly pretty, but functional, and he should be proud of himself for doing it.

While I’m typing away here, Demetrius is in my office watching Happy Feet, repeating as he watches it, some former episode of Spider Man.  However, I am thinking that in two years, maybe he’ll be doing things on his own that I can’t imagine now, no matter how hard, he’ll be doing them, and I won’t be standing over his shoulder, worrying ceaselessly.

It wasn’t the good time at my race, or anything else that had me smiling (endorphins included). It was this boy, in the mens’ room of IHOP.

Go figure.

Posted by Jerry in 19:52:00 | Permalink | Comments (3)

Saturday, June 21, 2008

Photos of Demetrius From Camp Happy Hearts

Looks like Mommy got some real good photos of Super D’s final act at camp:


Must be loud, Demetrius has his hands over his ears during the dance phase….(and that is a classic Demetrius dance move)


Yep, loud…


Demetrius and his good friend, Harrison Tew


Clearly channeling the Olympics from Bejing, later this summer…..

Posted by Jerry in 20:27:42 | Permalink | Comments Off

Friday, June 20, 2008

Way To Go Eric!

Great piece in today’s Hartford Courant. Click here.  Keep your kids goals set and keep at them.
Posted by Jerry in 18:49:24 | Permalink | Comments Off

Demetrius Swimming

So last night I was able to get to the swim meet in time to watch Demetrius and Maya both swim.

I just have to say, it was a hoot watching Demetrius. As he was at the start, I stood at the other end of the pool (in his lane) and he saw me. He waved, and then swam to me smiling the whole time. About half way, he stopped, looked around, floated on his back for a second, and then finished up the race.

He did this at the beach while driving his go-kart (as I mentioned), he stopped and looked at a fountain. He’s just got other priorities than finishing as fast as he could.

It got a bit worse in his second race, in fact, he wasn’t even out of the pool before they started the next heat. I had to say to him, “Come on, lets go to McDonalds and get a Kung Fu Panda toy” to get him out of the water.

Then of course, I had to basically tackle him to get him to put his shoes on, dry off, and collect his stuff before he ran to my car to go to McDonalds.

Good to see we keep our priorities in order.

I bought a Flip and hope to have some video that actually works that I can upload of the kids swimming next time, it would be great to capture that smile and ‘stoppping in the middle of the race to take a rest’ on video!

Oh, and I think Maya won all of her races. I’m not sure she cares at all. She just wants her snacks and McDonalds too….

Posted by Jerry in 16:21:50 | Permalink | Comments (2)