Wednesday, September 9, 2009

Good Bye And Thank You

When I started this blog it was a real effort to share my experiences as a father of an autistic little boy – my insights, concerns, pain, and also to laugh some.  It is part of the fabric of my life and the point was that I’m not taking my life too seriously (though I take Demetrius’ autism quite seriously) and I was going to ‘muse’ about it.
Most of the posting have been wrapped around those foundational elements, with periodic other subjects or segues from autism, but ultimately, I’ve been recounting the emergence of two members of the family (Maya and Super D) and our interactions with ‘it all’.
But everything has an ebb-and-flow, a beginning and end.  It is time to end this blog.

First, there was always the agreement between Kim and I, as the blog caught on, that at some point it would end.  We didn’t transfix a date or time, but I figured it would be some point around when Demetrius turned 10.  So it is.
Frankly, the stories of little boys with autism and toddler sisters are not that uncommon, and the ability to yarn a tale or twist the story in just a way to be humorous and solicit a chuckle, or a tear, is not that personal.

But the fact that Maya has real stress in her life, at the tender age of seven, that if she doesn’t hold Demetrius’ hand in a parking lot that he will be hit by a car and die, and it will be her fault, is just that – personal.  The fact that she’s dreaming about it, or lets be clear, this is no dream, this is a realistic nightmare where a dream should be, is really, well – don’t take this wrong, not any of your business.

The rub here is what some of you are thinking, well, you just did. That’s the point though, this is what autism is turning into in our lives, and the effects of it on the Grassos.  It is what is worth writing about, but not what should be put up on a server for the world to see.  What if this fear manifests itself and requires some counseling?  Do I want Maya’s friends, friends’ parents, or teachers, to see this? Absolutely not.  It may or may not be any of their business, but if it will be, it won’t because they read it on the blog.
Folks, this is where autism and the Grassos are going. This is the natural path. Demetrius will be 10 this year, he’s asking questions why he doesn’t have any friends; and my fears and worries aren’t something I want to spill into Microsoft Word every day.  How am I going to teach him to shave without slitting his throat?  My ankles aren’t getting any better no matter how much I run – and he’s getting faster.  He seems to be developing an angry streak that results in some periodic serious screaming sessions at Kim.  What if it gets violent?  Again, some of these are things that could be interesting to write about, but also none of your business.
I also need to be cognizant that as the kids age, they’ll want to make a decision on what about them is public and what isn’t.  I’m fairly certain that Maya will end up being a major blogger/social media maven as she has the itch to communicate at all hours she’s awake – but if she’s in therapy dealing with being the sibling of a special needs child, that’s her choice to communicate what that’s all about. Not mine.
So am I saying that our life is taking a ‘darker or more depressing’ tone? No, not at all.  I still love when Demetrius says to his mother when she tells him to talk to me on the phone, “Mom, I really need to watch Star Wars.  Daddy needs to work and be quiet.”

All of what I wrote above was expected to emerge over the course of time, and it has, it just isn’t what should be made public to everyone that clicks a hyperlink.
Real issues will emerge with the kids in their pre-adolescent and teenage years, and I just think blogging about it is an invasion of their privacy .  Further, the issues not written about would be the ones worth writing about, and that’s the value to you as a reader.

What does emerge that I think is fair game – doesn’t lend itself to this blog.  The daily gentle musings of being a father to a daughter that says ‘totally’ and a boy who wants both red and blue lightsabers, is normal.  I’m laughing and chronicling a normal aspect of a life.  That’s important, sure, to remind everyone that someone has to pretend to be the Sith Lord in a backyard battle with a high functioning autie, but it wouldn’t be what I think I should be writing.  And that’s my rub.
I think for awhile I’ll be lost not have the cathartic outlet that this blog has provided to me.  I have often thought that I’m so lucky Dan Greenfield convinced me to do this, because I had so much to say about our autistic life and to live in a time that enabled me to do so, interact with some other parents in the same boat, by just banging on a keyboard and clicking the button ‘post to blog’.
I want to thank every single reader that ever spent any time here.  Many of you comment, and I withhold. That was done by design as I wanted the blog to have a positive feel, not turn into a pity party or a cry session.  I know from this site I’ve had many online/email discussions with other daddies trying to get their arms around a diagnosis of their son/daughter.  I mostly wrestled with this decision with you in mind on whether to keep going or not, those who probably have yet to ever do a Google search on autism and dads. But I’ve made my mind up and I know: there will be other bloggers.
A few things I’ve learned is that it does take a village of therapists and doctors and caring teachers and administrators and interested neighbors and parents, to make it through this.  If it were just us, well, Demetrius would simply not be as well off as he is today.

And don’t listen to Jenny McCarthy, you can’t fix autism.
Good luck to each and all of you. This has been fun, and saved me a lot of money in therapy bills ☺.  And I will miss writing to anyone who was interested in reading. Good bye for now.

Posted by Jerry in 18:45:29 | Permalink | Comments Off

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

A Couple of Autism Stories

Nonni Cheryl will love this one, as it is from Oprah Magazine

For you Temple Grandin fans, she was on NPR earlier this week

Posted by Jerry in 15:11:48 | 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