Friday, January 30, 2009

Long Day…Big Payoff

Whew, who am I kidding…long week!

Payoff is huge though, on a plane back to Atlanta to see Kim and the kids tomorrow. I know you guys get tired of me writing it, but I ain’t gonna stop – every time I see them it feels like Christmas…

It kind of is, in a way, my folks are flying in also for the weekend – because it is Super D’s birthday!  Can you believe it, Sunday the boy is nine years old. Wow.

I was talking with Grandpa yesterday and he was recounting about when Nonni and Grandpa came out to California for Demetrius’ first birthday…I remember him in his high chair, and we gave him a cupcake, the first time he had refined sugar…and he really, really liked it. And he really, really liked wearing blue icing…blue icing…of course, for ‘Bear in the Big Blue House’ Super D’s favorite TV show at that time…

How far we’ve come, from Bear and Ojo to Spider Man vs. Doctor Octopus. Well, we all evolve…except me I guess. I pretty much still love Spidey vs. Doc Ock….

Some Photos from his eighth year….looks like a pretty good one, minus the one of having to do some homework or go to the American Girl store…





Posted by Jerry in 01:56:40 | Permalink | Comments (2)

Thursday, January 29, 2009

Saved By Zero

Yesterday I was at work and I got a phone call -

Maya: Hey Daddy how are you?

Daddy: I’m fine Maya, how are you?

Maya: I’m good.  Do you want to play tic-tac-toe?

Confusion on Daddy’s part.

Daddy: Tic-tac-toe on the phone?

Maya: Yes, where do you want to put the ‘O’?

Daddy: Um, Maya, if I say on the left, will you put it..

Maya: OK I put it on the left.

Daddy: How can I win if you just put the ‘O’ where you want?

Maya: I’ll win, okay!

So by then Kim gets the phone away from Maya for just placing random phone calls.

I wonder if she beat Grandpa at tic-tac-toe before she called me….

And I wonder what this month’s cell phone bill will look like after all of these calls…..

Posted by Jerry in 00:56:40 | Permalink | Comments (1) »

Tuesday, January 27, 2009

Autism Pieces

I am sure many of you all have seen this – but I was able to get it Hulu.com so I thought I would share again.

From the NY Times Letter to the Editor

The NY Times article that the above references

Vaccines and autism: yet another dead link (Discover Mag)

Drink some Gatorade

And just in case you forgot about Jason…..

Posted by Jerry in 12:20:11 | Permalink | Comments Off

Monday, January 26, 2009

Response

So this was a comment left on the blog earlier about ‘Manic Monday’:

Don’t let Maya have the pancakes, why torture him like that

Okay, so here is the thing.  I’ve had comments that told me that I’m being punished by God, that he is a result for my past mistakes in life.  I’ve had some crazy-o call me at home and call this blog a farce…but you know, this one simple sentence is bothering me a whole heck more.

I think because it involves both kids, and a lack of understanding about how one affects the other, and the attempt to balance the lives of our kids.

No, I won’t not let Maya have the pancakes.  That’s the easy out as a special needs parent, in my opinion. Or why even go out to eat as a family, it is ‘too hard’ for Demetrius?  Demetrius didn’t cry, he didn’t throw a fit, he was a mess all weekend for a myriad of reasons…but at IHOP he ate his eggs, bacon and fruit cup and then he went into his autistic bubble and stimmed by taking the paper from the straws and twisting them oragami for the most part.

Maya wasn’t brought into this world to suffer in any way/shape/form because her brother is autistic. The fact that he is autistic will be hard enough for her…on a day-to-day, if not hour-by-hour basis at times.

There are already so many things that Maya suffers beyond not eating pancakes that maybe I’m not clearly articulating… but here is a small sampling.
 
How much of her toddler years were spent with a Mommy trying to give her a bit of attention while she worked with her brother to just get him into our world.  We all know how much mental and physical energy it takes working with an autistic child – and we all worry to an extent that the neuro-typicals are being left out. 

Maya’s even said that Demetrius gets to go to special places and do special things, while she has to wait outside.  What does this mean? In her eyes she doesn’t understand that he’s in therapy.  But she’s in a boring waiting room with mommies talking about leaky gut syndrome and IEPs.

Or getting Mommy’s attention at a park…because Mommy can NEVER take an eye off of Demetrius, or he’ll be another little boy on the news lost in the woods. 

Yes, she knows that she never really ever the true center of attention like Demetrius is.  See, he’s the special one…she’s yet just a bit too young to understand that the back half of special involves the word NEEDS.  She acts out in ways at times to just get our attention, on the days we are most tired and at wits end dealing with him it takes every bit of our adult ‘abilities’ to recognize that she’s reaching out in her own way….which makes it all the more tiring.

So while it may be a bit tough for Demetrius at IHOP, and I truly, truly, truly feel sorry for him that he can’t have pancakes – I’m not going to not let Maya have pancakes.

Because, my friend, relative or just my blog reader, pancakes are a small, small thing in the bigger scope of things.  No one is being punished here – we just need to find a restaurant that might have  ‘Demetrius friendlier’ menu than IHOP. Or not. But we already have robbed her of so many other things…that she can have pancakes whenever she wants.

With hot chocolate.

It’s not always about him, even when it is, you have to find the balance with the other one.  See through to the other side.

Posted by Jerry in 01:25:58 | Permalink | Comments (8)

Sunday, January 25, 2009

Two Sides To A Coin

Last night I Skyped with Kim and the kids.  Maya was a bit of a toot, but Demetrius let me know he wanted to go to Target (surprise!) and buy a new video game.  We told him no, he has a birthday next week, a birthday party, and his Nonni and Grandpa coming in town.  He’ll score plenty of goods.

As Kim and I are talking we hearing a kind of shaking and crashing.  Kim went down the hall, and I heard her chuckle.  She got the computer (kind of a weird feeling when you Skype and you don’t no  what the news) and walked me into his room.

Demetrius was emptying his piggy bank.  He knew he had the money.  Even though he doesn’t really know how much anything costs, or what a dollar means compared to a quarter — right now.

But he knows, he knows that it is costing money to buy things.  He knows that he has money.  He knows that if he wants something and we say no, that maybe if he has the money, he’ll get to buy it.
 
I haven’t spoken with him tonight (last time I spoke with Kim it was early afternoon), but I wonder if he is too busy to talk to his dad…playing a new computer game maybe?

Skype isn’t the highest resolution picture in the world, but I sure was liking what I was seeing last night.

Posted by Jerry in 01:30:29 | Permalink | Comments Off

Friday, January 23, 2009

Great Piece Worth Watching

What’s great about this piece is seeing the two boys reacting to the tools and communicating. You’ll enjoy. 
Posted by Jerry in 17:19:13 | Permalink | Comments Off

Thursday, January 22, 2009

Commentary From A Seven Year Old

Daddy:  So what did you like best about Lexington, Maya?

Maya: The snow.  I like snow alot.  There was alot more than in Georgia.

Daddy: I know, I think that’s the first time it has snowed that much here.  What else did you like?

Maya: Your office. I told Mrs. Kill (Maya’s teacher) that we could have recess in your office it is so big.

Daddy: I didn’t think of that, but I think you are right!

Maya: Yes, and that you live in a really small apt., and that you are really grumpy when we jump around in it.

Daddy: Ummmm….well, yes….

Maya: And Mommy liked alot of houses.  Did you like the houses?  

Daddy: Well I didn’t see any, remember. We went to the movies why Mommy went looking.

Maya: So Mommy will pick out the house then….

Wow, she’s so right!

Amazing how much this seven year gets….
Posted by Jerry in 00:51:25 | Permalink | Comments Off

Wednesday, January 21, 2009

A Bad Cold and A Hat


Now that’s a hat!

So I’ve got a cold.  Where did I get it from…oh yea, the kids were up here this weekend, and we spent a lot of time together…they are germ bags, and if they aren’t infected, they are carriers…. kind of like Invasion of the Body Snatchers.  Don’t fall asleep…Maya’s germs will get you.

All that being said…was it the Dayquil or was Aretha Franklin’s hat just totally…diva-ish… this afternoon during the election?  What were we atching again… Boo-yah, you go Sista! And you know what, a white chick could not pull that off.  Only Aretha Franklin could. Enough said.

And Obama and John Roberts mis-statements…were very human to me.  It was two guys of the new generation of politicians – two guys that will be affecting the country’s future in the years to come.  Kind of exciting, isn’t it? I don’t care where you fall out on the Democrat Vs. Republican thing….things are a changing.


Especially with a hat like that…you know things are a changing…


Posted by Jerry in 01:40:57 | Permalink | Comments (3)

Monday, January 19, 2009

Manic Monday…..

As you would expect, I didn’t blog over the weekend because I had Kim and the kids up in Lexington. I was like a kid waiting for Christmas day on Friday.  Couldn’t wait for them to get here.

It was great for them to finally get some time to spend some time in their future hometown (can hometown be future tense? I’m not sure…).  That said, unfortunately, I think the kids became very frustrated and stir crazy – I have an extremely small apt. (why would I need more than 500-700 sq. feet for me and my clothes?), and we had brutally cold weather. 

You can’t really run kids outside at a playground when you are used to 50 degree winter days in Atlanta and have a 15-degree day in Lexington. That’s just a recipe for getting sick.  So on Friday they spent the day in the car driving up, on Saturday and Sunday spent it inside and some of it in a small apt., and Monday in a car driving back to Atlanta.

So we didn’t get the opportunity to run around at a local park… or last night, play in the snow (it started snowing way too late) and they just looked at it out the window in their PJs, and so longingly when they loaded up in the van this morning to drive back to Atlanta.

I feel sorry for their teachers tomorrow.

One thing I did realize was that in such an environment, I’ve lost my ‘sea legs’ when it comes to dealing with aspects of Demetrius’ autism.   I quickly found that my patience was being tested from about 2pm on, Saturday (Kim was house hunting, getting to know neighborhoods) when he was really struggling to process everything.  I’m sure he was excited on Thursday and didn’t get to sleep regularly.  Friday was exciting driving up. They were up at about 6am on Saturday morning…so he was a bit off kilter by lunchtime, Saturday.

Lots of TV talk, shrieking and more than a few fits and focus on one particular item – purchasing a new Horton Hears A Who DVD from Target.  

I also didn’t realize how hard it would be to think through ordering food on a menu for him.  Imagine looking at an IHOP menu and realizing no pancakes and then going through the lists of ‘nos’. Plain eggs, bacon and fruit cup – that’s your order as a 9 year old.  Sis is having pancakes. That’s tough man…and even though Dad said he’s doing it to…that’s not cutting the cheese when Maya is pouring blueberry syrup on silver dollars.

None of this is going to help him on a day where he’s fussy and tired, it only expounds the frustration and anger.

Nor is it going to help Daddy who’s out of practice.

My frustration, and his, is a very stark reminder of how trying life can be on a day to day basis with an autistic child.  I bet he asked for Horton Hears A Who every 5-10 minutes for three hours straight. 

I can safely say that I haven’t forgotten anything but dealing with the boy and trying to get him to relax, but when I come home to Alpharettta – his house, nicer weather, his room, his toys, his DVD player, and space to roam – he’s better for the weekend.   His OCDing for something to give him comfort isn’t so needy and stark. He’s got his fidgets and creature comforts all around.  Don’t get me wrong – he’ll bug me to no end for what he wants in that scenario also, but it won’t have the manic energy around it like it had this weekend.

This weekend’s environment was tough on Demetrius and it really showed through.  Not a reminder that I like having, but one that makes realize how hard this kid’s days can be – and how his inability to process can make the exciting frustrating, and a limiting environment can bring the walls in on him, and all of us.  I wonder if he had fun at all. I do hope so.

But lets get past all of this – I can’t wait till they are up here with me. I miss them crazy and they just left this morning.  And they watched Horton Hears A Who on the way back to Georgia…

Posted by Jerry in 23:20:52 | Permalink | Comments (1) »

Thursday, January 15, 2009

What I Notice and Today’s Autism News

What do you notice and think about now since you’ve got a special needs kid that you didn’t before?

I’ve discovered lots.  One of the things I’ve noticed is, well, other people, and I think about their lives and how they go through their days. 

I’m not the guy you’d meet with the most empathy in the world, but I have alot more since Demetrius came into my life than before. Of course, the jerk in me is that I’m more sympathetic, typically, to those I don’t know than those I do.

So I’m at this new job and I’m noticing that the hispanic cleaning lady won’t make eye contact with anyone and if you say hello she will put her head down and nod.  As I was walking back from a meeting the other day, and earlier today, I saw her drinking a styrofoam cup of water, trying to do so a bit behind the coke machine between it and some recycling bins in a break area.

I don’t care where you settle in on the argument regarding illegal immigrants, etc….I just wonder, what does your life have to be like where you actually straight up feel like a second class person, enough so that when you need to get a drink of water that you try to hide the fact that you are taking a water break?  In fact, do you actually get a break?  I wonder as I notice.

I made a point later in the day as she was emptying the trash in an office down the hall of making eye contact and saying hello. I got a small smile.  It’s a win in my book.

—–

I’m not a member of my new company’s credit union but there is a gentleman that works there that has a disability where his two arms are misformed. One only comes to what I’m figuring to be about a regular person’s forearm and the other somwhere between that length and around our elbows. Looks as if his fingers work properly. 

I was behind him walking back from the cafeteria and he was carrying a tray.  Had it balanced by his ‘better’ arm and pressed tightly against his stomach and side. As he got to the entrance to the credit union I told him I’d get the door, a brief guy exchange – “thanks, I appreciate it/no problem.”  I noticed he had on a tie. and the way his collar was set I could see that it was a real four-in-one knotted tie.

How long do you think it takes him to knot that tie? I’m sure he knots it and keeps it that way and finds a way to put it on and take it off each day.  Even so, how tough is that?  I think that no one should probably be more proud to wear a tie than this guy.

Or going to the bathroom (I saw him walking out later in the day).  We made eye contact. Guy rules here – no talking around urinals unless absolutely necessary.  Guys, we all just slink up and unzip (some better than others even in our 40s!).  This isn’t going to happen for this guy.  He’s probably got a whole routine he has to follow to properly execute this maneuver.  How long do you think it took him and his parents to learn to do this as a child? How many accidents do think he had?  How many did he have in front of his peers when he held too long as a pre-schooler/kindergartner?  Even today, he probably has to plan way in advance of this…when we really don’t even ever think about having to plan to go. 

Maybe I’ve become a bit of a screaming liberal as I’ve gotten older because D has enhanced my radar for these things… its becomes stronger, more clear.  Some of us don’t get the same breaks as others in life, and some of us never notice little things because it is…well, human nature to not notice sometimes.

Of course, like I said, when Maya falls, I’m still her Dad. She cries. I get a bit testy as I think she’s being a drama queen.  I tell her to get up, shake it off, falling down is no big deal.  So I’m no saint, but I certainly think I notice these things a bit more than I used to.

Okay, to some autism stories…

—–

Hey, look a gluten free autism story on the local NBC affiliate in LA….

Two years ago it was all about major funding, and the other side of the moon?  A bad economy and the cuts to funding are starting to show up….

Well, this headline gets to the point.

We’d like to have had Demetrius in this classroom!

You might not want to move to this town in Idaho.

We all kind of feel this way, don’t we?

Posted by Jerry in 01:42:49 | Permalink | Comments (1) »