Tuesday, September 8, 2009

I missed that, or was I just not paying attention?

As I’ve reported on this blog/facebook/twitter, Nonni and Grandpa were in for the weekend. Always a good time, and let me tell you, Maya’s got the tour guide bug.  She showed Nonni and Grandpa everything important in Lexington – Magee’s (out of longjohns though), our medicine cabinet (our old house didn’t have these!) and the scary rooms in the basement with the heater, etc….
Demetrius wanted to take them to Target. There are two here in Lexington, you know.

We also went to Movie Tavern, which Maya and Demetrius love.  Now, Movie Tavern was started by two dudes in Fort Worth, and there is one about 1.5 miles from my folks house in Arlington, but Maya doesn’t need to know that my folks know this place… because it is all new to her.  The movie we saw may have been the singularly worst kids movie I’ve ever seen (even worse that Night at the Smithsonian), Shorts.

But, after the movie, and seeing what Demetrius’ high school years will be like (he ate a burger {no bun}, fries, and pretty much a bucket of popcorn and asked for more) when he’ll have a hollow leg – Maya asked the question that was the theme of this very bad movie, what would you wish for with a wishing rock?  Nonni and Grandpa played along, but Mommy answered with, “Oh, I’m pretty sure that all of us would wish for the same thing, Maya.  But right now I wish that it won’t rain tonight.”  Even though I was driving, I saw Nonni and Grandpa shake their heads.  But me? I was confused. Or maybe I’m just slow. Or just half-ass paying attention.  So it took me a few minutes to ‘get it’.

It is a really weird place to be when you realize you can’t really picture what your kid would be like if he weren’t autistic.  And you catch a statement by your wife about it, and wishing it weren’t the case.  I mean, it was completely said with good nature, but still… this is really all we know.  Demetrius wouldn’t be Demetrius if he wasn’t autisic.  He’d be someone else.  Would I want that? I’ve probably at some point pined for it on some posting, or two, or three, on this blog.  But today, I don’t know.  This is my boy, right or wrong, good or bad, autie or neuro-typical.  I guess, at almost a decade, I can’t imagine him any other way.  Or I was just half-ass paying attention – which is often the case, I’m afraid…

Posted by Jerry in 11:20:01 | Permalink | Comments Off

Thursday, September 3, 2009

New Toys!

This morning I wake Maya up – in our little game of cooing and waking up I remind her that Nonni Cheryl and Grandpa are coming tomorrow. She jumps up, squeals and basically yells, “Demetrius, Nonni Cheryl and Grandpa are coming tomorrow! It is one day away!”

Demetrius yells back from his bedroom, “I know, NEW TOYS!”

Say it like it is, Super D.

Posted by Jerry in 21:19:27 | Permalink | Comments Off

Wednesday, September 2, 2009

The Chart

Will the Reward Chart Work? We'll know after 20 or so days....

Will the Reward Chart Work? We'll know after 20 or so days....

Homework with Demetrius can simply be painful. He dawdles and he runs off and then if it gets to a point where you have to take something away, like, say, dessert – meltdown city.  It’s even worse on days where he has therapy.

Tonight was that special occasion where you feel that at the end of the night you are just going to stare at the wall and contemplate that another day of this and we’ll know the real reasons the good lord taught the Irish and Scotch to make whiskey many moons ago.

I decided to take all the good advice and ideas out there in ‘autistic dad blog land’ and create a chart of rewards for Demetrius, that’s long to achieve but focused on homework.  IF he does his home work without fits/crying/yelling/throwing things/telling Mommy he hates her – he gets a check off of one of the number boxes. After 20 checks, he can go to Chuck E. Cheese, then we do it again and we can get a DS game.  Same with Maya.  He’ll hopefully model better if he sees she’s in the same boat for her rewards (Gattitown/American Girl Outfit).

My hope is she doesn’t run away with this and he ends up frustrated, that he can keep up and hit the Chuck E. Cheese reward pretty quickly.

Kim and my reward? Not having to spend the moolah that would have gone to the rewards on the whiskey.

Posted by Jerry in 02:12:48 | Permalink | Comments Off

Saturday, August 29, 2009

Photos For S&#(s and Giggles

Posted by Jerry in 21:20:22 | Permalink | Comments Off

Saturday Change Of Plans

We decided this weekend that we’d turn Mommy loose for that antiquing day (you know, the one she didn’t get due to the fish) and the kids and I made big plans: breakfast out, walk around the the arboretum with Buddy, Chuck-E-Cheese…you know, big plans. Well, one down and two to go…maybe.

Once we got back from Magees Kim pointed out that the Volvo has a flat tire.

Great.  So I’m banging away at the keyboard while the kids moan about maybe not going to Chuck-E-Cheese as we wait for Triple A, and I tell them – its not you that suffers, it is Buddy not getting to go to the arboretum.  He’ll just have to do a regular around the neighborhood walk/bike ride.  Riding bikes? Not bad, but really, lets get down to it. We are still going to Chuck-E-Cheese, right?

Drive on that spare Dad, priorities. :-)

Posted by Jerry in 15:12:43 | Permalink | Comments Off

Friday, August 28, 2009

Nervous Energy

Tonight the kids had an ‘open house-PTA-cookout’ at the school, where we could come and find out how to get involved and the kids could run around and act like monkeys.  Though at about 4pm, Kim calls me and tells me the kids are acting out – Maya had been sent up to her room and Demetrius was pretty much on his way.

The long and short of it all is this is the first full week of school (Mon -Fri) and the kids are tired, they don’t have any friends of the sort yet where they can just drop their backpack and run to play at so-and-so’s house, and other nervous energy/I just moved/angst and apprehension fears (ex: Maya wants a little girl to come to our house and play, but she won’t go to her house to play because she scared of not knowing the parents or the neighborhood, etc…).  The pandora’s box kind of just opened up this afternoon and tonight.

I watched them run around the playground as the cookout was obviously outside, they didn’t really socialize with any kids that I could tell (I kind of expect to herd cats with Demetrius, but Maya’s shyness is a bit surprising for both Kim and I), but they played hard. That in itself is a good sign, it is only a matter of time before Maya finds another wild one to run around with, and Demetrius did attempt to talk to a few kids, but he was just more interested in being able to run at will (he did at one point join another group of boys who all took their shirts off.  Why, I don’t know, but a gaggle of us parents swooped in to put an end to that!).

The patience part of finding a new friend(s) is the hard part, but by this time come next May, I would expect the playground scenario to be a bit different, as they make a few friends and the energy they have won’t have to be spent because of fear of the unknown, rather, it will be spent having a blast with some good, ‘relatively new’, friends.

Posted by Jerry in 02:12:22 | Permalink | Comments Off

Wednesday, August 26, 2009

The Lexington Blue Thunder!!!!

Below is the kind of email I really like getting.  Read here about this program that Super D is in (I do  hope he likes it!).

—–

Hello TOPSoccer families!

We hope you are as excited as we are about our first official practice this Sunday! We will be sending you more detailed information this week about our TOPSoccer fall season, but in the meantime wanted to remind you about this Sunday’s practice.

Where: Masterson Station Park Soccer Complex, Field #3 (next to concession stand)
Map to fields: http://www.lysa.org/recreational/fieldmaps/Masterson%20Station.pdf
Date: Sunday, August 30th
Time: 2:00pm to approximately 3:30pm

What to bring: Each athlete should have on shin guards and bring water. Soccer cleats are desirable, but not mandatory.  We will have plenty of extra water.  (and don’t forget your lawn chairs for the parents to relax on the sidelines!)

At this first practice, players will meet their buddies, coaches and teammates.  We will be dividing into teams and the players will participate in the very first practice of the Lexington Blue Thunder!!!

We are all excited to be working with your children and teaching them the “beautiful game.”  Thank you for giving us this opportunity!

See you out on the pitch!
Jessie, Jason, Lindsay, Rod & Robbie
LYSA TOPSoccer Coaches

Posted by Jerry in 19:16:50 | Permalink | Comments Off

Wednesday, August 19, 2009

So What’s It Like?

When the boy was diagnosed seven years ago, I used to offer up to everyone as much as I could about him, autism, and us.  This vein of thought, of course, led to this blog (along with what the marketing team at blog.com calls, the ‘itch to write).  I didn’t lead conversations with, “let me tell you about our autistic son.” But I didn’t hold back either.
It isn’t that I hold back or have changed my tune about the sharing of info, in fact, I suspect and hope, as all of us make this journey and have more experience, its just not that defining a factor in conversation.
If you get to know me, over time, you are just going to know. Its as much a part of me as my love handles, dashing looks, witty personality, 26-inch inseam, moxie and machismo.    I find that as I look over my blog postings the last year or so, they are becoming less emotional.  I don’t feel the need to spill out over the rim of the cup with words expressing my frustrations or misfortunes as I used to.  Its not that it is smooth sailing in front of us by any sense, it is just that I’ve come to expect the choppy waters.

But now that I’ve been in the new town for the better part of nine months (making that turn into a year now), and we’ve gotten to know a few folks (me both personally and professionally), and I’ve gotten the almost whisper question by a handful – they ask so seriously and quietly, as if the question will be seen as bad manners or I’m going to get up out of my chair and get my keys and drive off “What’s it like?”

Hmmm, an excellent question that can’t be answered simply, or without a nice glass of Pinot Grigio or Cabernet Franc!  But it can be written, I suspect, more easily.

What’s it like?

Liberating, because as I’ve said, I know exactly what my last thoughts will be on my deathbed, “Is he cared for, and did we give him a good life?”  Such epiphanies will set you on a certain path to make certain choices. As we look back at the short time we were here, I’ll look back at only few things, overwhelmingly.

It’s like Super Glue for me.  Once you get that special needs diagnosis with a child, it is stuck to you. It isn’t going away.  I suspect this is the same realization families fighting cancer and other diseases and afflictions have.  It is here, with you, and you either deal with it, with you when you look left or right or you try to pull it off, and it doesn’t go away.

Humbling.  I am no way in control or master of my universe.  His bad days and his ticks, like chewing through a tee shirt or squealing at the top of his lungs, TV talk, the whole enchilada, reminds me of the randomness of life.  It is human nature to try to control our environment, and some of us do it better than others, but to know that at the end of the day, ‘this’ has happened, well, keeps you grounded.  The highs aren’t too high anymore and the lows aren’t too low.

Lonely. God, at times is it lonely.  Watch some other boys play soccer and you ache to see Demetrius do the same and interact in a certain way with his peers, to experience what others are experiencing…and you just feel very alone.  Or when he just wants to turn off and decompress and turns off from you.  The TV talk can be deafening.  This is less an issue each passing day, but it is still there.

Tiring.  The cycle of maturation trickles rather than flows.  Here’s the explanation of what I mean: remember when you took your toddler-five year old to the park. You had to watch everything, you couldn’t not pay attention.  High alert at all times.  As your child matures much of this just naturally ‘dissipates’ through lessons and swats on the butt. Look both ways when crossing the street, don’t wander off following whatever catches your eye. Ask if you can leave one playground to go over to another (some kids catch on quicker than others).  With Demetrius, we still have to hover like over anxious type A new parents at the city park for the first time.  Thus, why I can legitimately say that I’ve never been more mentally tired than when we came back from Disney World (that and the weather and the fact that I was the family pack mule).  Will we ever outgrow this? I don’t know.  But I suspect we’ll be too old to go play at the park before we actually do.

Lower bullshit tolerance.  I think this one is pretty much self-evident.  Get over your &#(@&@ self.  Once you have kids it stops being about you any way.  Add the special needs issues all over it and you’ve got to tell yourself at times, “His or her worries are just as important to him/her as yours are to you in regards to Demetrius.”  That’s the first free pass.  After that, solve your problem and quit bitching about it.

Living in the moment.  As much as tiring is an issue, you do live much more in the moment.  Note my posting on diving into the pool from the high dive last week.  Look what he did.  Now just don’t do it again or you are going to give your mother a heart attack, boy.  See also, humbling above. You gotta plan for some things, and you gotta let other things (mostly things tied to your personal ego), go.

Rereading this, I can accurately say it hasn’t improved my patience or tolerance for stupid mistakes. But hey, even if I can identify a few things insightfully, I’m still human and have character flaws.

Maybe this is just a realization at 40 I am who I am, but maybe this too, is something I can attribute to autism. It’s made me better in a lot ways. Or, at least, made me aware of a few things.

Posted by Jerry in 17:56:10 | Permalink | Comments (1) »

Monday, August 17, 2009

Re-Soccering

Over the past few years I hadn’t noticed how filled my weekends were with kid events until I lived without the fam for that extended period with the relo.  It kicked up again this weekend when Demetrius had his first ‘soccer get together’ (Maya’s starts on Tuesday night).  The soccer league D is playing in is a lot like the Miracle League he played baseball in a few years ago.  How this will play out remains to be seen as soccer is very different from the base paths, but we are giving it a go.
As is always the case with Super D, he is giving it the gallant effort we are asking of him, but he isn’t enthused.  Soccer was not something he enjoyed, he felt the pressure of both his teammates and the parents, and as Kim says so aptly, “Demetrius does not want any attention at all on him, if possible.”  His shy nature works against him here.

What we didn’t do with soccer in the past, that worked brilliantly with Miracle League, was to make each game a complete outing. We’d go to Miracle League, and then go to different ‘Demetrius friendly’ restaurants that he really liked afterwards.  Combining the experiences.  With 8am games for soccer on Saturday mornings (no cartoons, wake up and immediately insert him into a stressful situation) and then not be able to enjoy an experience afterward (either Maya has a game or the line to wait for breakfast at IHOP is :45 long at 9:15/9:30am) didn’t play well with him.  We’ll (Kim and I) will have to be better this time around. What this means is, post-game:
•    Take him to eat a tasty treat, post-game, at a location he enjoys with video games and food he likes/can eat
•    Celebrate practices with a trip to Sonic for a grape slushy afterwards
•    If waiting for a ‘Maya game’, let him watch a movie in the van (portable DVD player/min-van DVD player) and play some Nintendo DS
•    Maybe after a great game where he plays hard and pays attention…make a post-game trip to Target (this may be too much and become the ‘expected’)

Soccer is much more than just a game, a snack, and a juicebox for Demetrius.  The game is what he does to ‘earn’ the quarters for video games and the French fries.  He likes to know that he’s getting something he enjoys for doing something that’s stressful.  It is a total experience for him, and once he gets used to the games (his buddy, the cheering, etc…) he’ll have fun.

I hope. ☺

Posted by Jerry in 17:20:25 | Permalink | Comments (1) »

Thursday, August 13, 2009

Unaffected

As Grandpa so aptly put it on the phone yesterday, you could have cut the nervous energy in the house with a knife the past few days.
Why? Well, we started school this morning.  New school. New teachers. New kids.  New fears and concerns.

Maya, will any girls like me? Will I make friends? Will I be the lonliest child in the history of lonely children? (Yes, quite dramatic, but we are good at that.)

Kim, IEP, IEP, IEP…what do the teachers need to know that I haven’t told them? What if…fill in the blank.

Demetrius? Well nothing really from him.

Me? Shit, I just wanted to stay out of trouble with Kim and Maya, mostly. But I was nervous if it wasn’t going to go well, what the ‘spillage’ might look like with the Grassos and the school.

So I bought some special ice cream, cherry pie, and other comfort foods to help…but that’s enjoyed, and then the worrying sets back in.

This morning, after I ran the dog, Kim popped out of bed at 5:45, very determined and very worried.  Maya popped up not long thereafter, chatting non-stop. Nervous chatting.  Filling the quiet space, and quiet space allows concerns and worries to crop into it….

Demetrius came downstairs with a comic book, singing a song from Willy Wonka.
As we got ready to leave for school, Super D turned to me and said, “Daddy, you don’t need to come, I’m fine.”

Okay, to not ruffle feathers, I stayed home. Gave some kisses and hugs, and the van pulled out of the driveway.

Surprisingly, Kim was home soon after? They kicked her out already? ☺ No, in fact, when Demetrius got to his classroom he turned to his Mom and said, “Mom, you can go now. I am fine.” And waltzed right into 3rd grade.  Maya was a bit more complicated…a bit.

So that nervous energy has floated out of the house….

Hopefully not to return any time soon.

Hope your first days were as uneventful as ours.

BTW – had dinner at restaurant called AP Roots tonight, very tasty.  D had two plates of French fries, so clearly school did not affect his appetite….

Posted by Jerry in 02:10:11 | Permalink | Comments (2)