Friday, July 10, 2009

Moving On

Most all of the time, while in the moment, you don‘t have the opportunity to reflect, or at the least, slow down, especially when the moment is raising a special needs child.
So right now Kim is sending emails, making phone calls, lurking and trolling local user groups, etc…to build the support system we’ll need for Demetrius, and I’m not even talking about in-school services.
How different it is than just signing up for gymnastics or soccer, or some other summer-bound activity that may lead Maya to more potential little girlfriends – no interviews at the pool to see if Maya and little Suzie are the ‘right fit’ for each other like Demetrius will have to go through with therapists and special needs pediatricians.

Beyond this, I’m also reflecting a bit about our last ‘big move’, from California to Atlanta in 2002.  Certainly a cascade of angst and fear, our discovery phase in evals and tests that the boy was autistic, and trying to figure out just what the hell this actually meant.  As I always write, it was a gray time, a move that seemed less than exciting or promising – not at all an adventure because of the situation.

So maybe, with this relocation, we are more in a ‘phase three’ – if phase one was what I wrote above and the learning and understanding of what the diagnosis would mean to and for us all, and how our days and lives would be shaped by it, and how it blended in to become…well, phase two may be the realization that autism is just part of our life, like the sun rising and setting and Maya’s non-stop chit chat.  Still hard and still making us peer around corners as we approach new moments in life, but nothing so gray as the last move.

So what could phase three be?  We know so much more about the boy and his habits, the ongoing give-and-take with remote control and DVD player passwords, what nervous ticks really mean for him (twirling of the hair when nervous or tired), TV talk from movies he liked when he was younger when he’s happy, etc…that he’ll actually talk with us now (still much prompting) – we also know he’s generally happy and nervous about going to a new school, no different than any other soon to be third grader who has relocated.

This leads me to think that phase three is much more about moving on? Could it be that we know that whatever is around that next corner, it won’t deaden us anymore? There will be low moments, but we know what that black hole looks and feels like, and we know that we’ll come up from it?  Moving on, maybe moving with speed?  We’ve had a few conversations about if I take to trip to NYC for work that we might take a trip in the City and see the Statue of Liberty…sure, we’ll go grayer (all those people on every side walk… aggressive cabbies!), but I don’t know if I could even contemplate doing this with Demetrius a couple of years ago, let alone consider it from a positive frame of mind first and foremost!  Moving from NYC to a conversation about hitting the mall in DC and doing the Smithsonian (might that be too much? Maybe, but not because of autism, but because how long can a 7 and 9 year old hang at a museum?!?).

Moving on.

I like this house, it seems brighter to me than the one in Atlanta.  When I walk in the door I don’t feel like I have to take deep breath of trepidation because we might be staring out the window and haven’t spoken to Mommy all day.  Coming home is an exhalation and someone running by with his Indiana Jones hat on asking me if I know where his whip is (Mommy has hidden it), or being told I need to change and I’m Darth Maul, and being instructed on how I need to die in a light saber battle.  Moving on.

We were lucky to live in Atlanta.  There is nowhere better in the world than the Marcus Institute and even if we have an absolutely great developmental pediatrician in the future – she or he won’t be ‘Dr. Amy’.  We have some great friends coming to see us soon, and we’ll be making many drives down 75 to see these friends in the future, no doubt. I miss them already.  The kids got along and we could spend hours and hours just sitting, watching TV and chatting.

But maybe for phase three to happen, we had to literally move on?  We’ve moved a lot in our marriage, professional gypsies, but maybe we needed the literal and figurative to happen for this to begin to take shape?

Who can say if Lexington will yield the friends Atlanta did? Lets check back re: school after next year to see if third grade was a success.  But right now I’m a place where it feels that we’ll be able to quickly move on if we hit a few bumps.

Oh, and for you long time readers of this blog, I’ve told you about what happens when I put my headphones on when I fly.  Somehow all the pain and frustration hits and leads to tears.  Some weird manifestation I’ve never figured out that wigs the shit out of the people in the seats next to, and around, me.  And those of you I’m closest to, I’ve promised not to blog about being out of town when Kim and the kids are home alone.

Well, by the time you guys read this, I’ll be back home from a trip to San Francisco.  I’m typing this over Colorado and the Rocky Mountains, I’m listening to the Cars, “It’s All I Can Do” from Candy-O, one of my all-time favorite albums.  No tears.

Moving on.

Yea, I guess we are moving on

Yea, I guess we are moving on

Posted by Jerry in 14:11:10 | Permalink | Comments Off

Tuesday, June 30, 2009

Transformers and Bitings…..

I took Demetrius to see Transformers 2 last night, and while it is action-packed, it is more than a bit too long.  Movies without strong plots should not be making the turn toward three hours.  However, I think Demetrius was more excited about the preview he saw for The Last Airbender. I have to admit, that’s two of us. Here it is:

I wonder what part the producers/directors spent more time on, transformer battle scenes, or photo-shopping out all the tats that Shia Labeouf and Megan Fox have?  We know they included his real life injury from his latest DUI.

One of the things that is truly getting harder for me, as the boy gets older, is separating out:
•    When the autism is taking its toll, and he is having a fit that is autism related
•    When he is having a fit because he’s tired, etc…like any nine-year-old
•    When he’s just being a brat

One of the issues of handling is how it ends up – regardless of the three bullets above, they all tend to end up the same way, with his screeching and screaming, and lately, a manifestation of wanting to bite himself (also the running away with his hand covering his bottom – that’s no different than any other 9 year old
.
The other night he was screaming at Kim as she was trying to get him to clean his room (surprisingly he has really taken to his room) and when I told him to stop or he was going to get in real trouble (Nintendo DS taken away), he starts to bite his arm.

I did the only two things I knew how to do (outside of the utter jaw drop I was doing internally watching him do this to himself).  I grabbed his arm while changing the tone of my voice from ‘in trouble’ to ‘lets talk’ and I told him that we do not bite ourselves.

We had a talk that first, yelling at Mommy when she tells you to clean up your room is unacceptable.  Every little boy and girl has to do it, whether they want to or not (he has always reacted to cleaning up a bit violently  – not physically, more or less acts out) and that biting one’s self is completely unacceptable.

I told him he’d get in more trouble from biting himself than anything else.  He can take time to calm down and then clean his room.

“You won’t take my DS from me?”

“Demetrius, if you yell at your Mom and not clean up, then yes, I’ll take your DS.”

We eye each other. I wasn’t angry, I didn’t yell, I just looked him right in the eye – sternly. He looked right back at me, clenched his jaw, and then tried to bite his foot (he does get ups for extreme flexibility).

We went through the exercise again about biting oneself, but man, this is not going to be fun if he follows through and leaves a serious mark….

Posted by Jerry in 13:47:16 | Permalink | Comments (1) »

Monday, May 18, 2009

The Road

Started reading The Road.  You know this book is going to be anything but uplifting – sure, there might be a moment at the end where you say that the spirit of man can even rise higher than the horror man can create  himself…but it isn’t going to be an easy read getting there.

So on page 15 I read this cold and gray sentence:

 He rose and stood tottering in that cold autistic dark with his arms outheld for balance while the vestibular calculations in his skull cranked out their reckonings. 

So it occurs to me that in a story about a post-nuclear holocaust world filled with nothing but soot, ash and gray, and not much life – the word that defines the condition that affects my son, my family, is the word the author chooses to use.

Depressing, weird and somewhat enlightening?  Why enlightening? For how many blog postings on the right nav of my home page would you click, where I describe the year of, and the following year post, diagnosis of Super D’s autism, as gray?

Unfortunately, I guess it is an accurate portrayal.

That said, I’ll probably never use the the term cancer in a similar way, as it must affect survivors or sufferers of that condition similarly.

Posted by Jerry in 02:33:13 | Permalink | Comments (2)

Monday, December 8, 2008

What Can You Get Out Of A Good Cry?

As all of you have experienced – throw a wrench into your autie’s routine and whammo, you get a fit.

Imagine if it is also around not coming home.  So not only is his schedule messed up, but he also doesn’t get to see me.

Crying:

  • Daddy, I miss you, why didn’t you come home?
  • Demetrius, my plane was broken.  I will come back next Friday.
  • Daddy, you promise.
  • Demetrius, I promise
  • Daddy, I need a new toy and movie

Nice try kid.

Posted by Jerry in 19:40:21 | Permalink | Comments Off

Tuesday, October 7, 2008

Learning On The Log

I’ve blogged before how much Demetrius loves their programs. They are right up his alley – but there is more to the organization than just nature walks.

Learning On The Log provides comprehensive sensory-based programs for special needs kids in Atlanta.  The organization’s focus is to provide a safe and nurturing environment that assists kids with many different challenges.  Some goals include: the ability to related an interact with peers and adults, motor planning, motor movement, sensory regulation and achieving a high level of self-esteem and self-worth.

They are in fund-raising phase and are having a related event on Saturday October 18th so the organization can grow and offer more of these types of activities to children…and who knows, possibly grow to your city too!

If you can give, please do so.  For more information, please contact Armann Fenger at armann@learningonthelog.com or Katie Franzen at katie@learningonthelog.com.

Posted by Jerry in 17:39:20 | Permalink | Comments Off

Thursday, October 2, 2008

More Sleepwalking

I’m still mulling over what I blogged about yesterday, the sleepwalking through the day comment.  As I think more and more about it, I just notice that where I am really coming to is a realization that this is a positive and a negative, the fact that I don’t think this is something I really do anymore.

Demetrius has changed our lives in so many ways…so many, in fact, that I have something to basically write/blog about on a daily basis.  But I’ve never quite thought about it in a way about how it may positively impact me.

I have stated that his condition makes me live in the ‘now’, because it proves the model that you don’t know what tomorrow does or doesn’t bring, so enjoy today to the best of your abilities. 

But I don’t spend nearly the time I spent before worrying about things that I had previously.  Sure, there are new sets of worries – but it has been liberating to an extent that some things I just now let go. Seriously – I mean, I don’t know how many meetings I’ve been in where I’ve watched executives go at it, people’s jobs being negotiated, budgets and vendors being cut and let go…power plays, where I have thought, “None of this makes Demetrius any better.” And while I’m engaged, it really isn’t life impacting for me.  So, I’m not at home worrying about this or that in the ways I would have previously.
 
In fact, last year, I knew the chances of me being let go from my job were extraordinarily high, and no matter what I did, I’d probably be let go.  It worked out that way.  I don’t remember ever worrying about ‘what’s next’ with angst or panic. You know, stomach churning worry. I can’t control decisions others make, only the ones I can impact. I’ve been consulting on my own now for seven months.  I’ve never really had a single sleepless night since my last day at the prior company on February 1st.  Do I know what’s next? No.  Do I worry about the business? Yes, in the ways that I need to re: taxes, new business, etc…but angst?  I don’t have any that I can feel on the surface of my emotions.  All my angst is really tied up in things like Demetrius climbing out on the roof…or his education. This I can impact.

Maybe everyone matures this way, but I’ve not heard anyone verbalize it to me.  If Demetrius were neuro-typical, would I be as appreciative of the good days as I am now?  Probably not, because of those days where he couldn’t talk and just never responded to us…that’s a real bad day when he’s in that kind of autistic bubble.  Other bad days aren’t that bad.  And days where he is excited and engaging are great.  So I am wondering if my average bad days aren’t as bad as the neuro-typical’s…and my good days are better because the bar isn’t as high?  I wonder…

I’m not saying I’m mentally liberated in some unique way. Honestly, my folks were recently out and we had a talk about the stress that Kim and I are constantly under and that it wears on us. This is true in regards to Demetrius.  We have to watch him like a two year old. That’s stressful because you expect your two year old to grow out of that phase. We haven’t, and that’s a lot of stress to watch a child all the time, that intently…and now he talks back….but again, I’m not sleepwalking through my day.  Certainly, this has impacted my being ‘on’ daily, in more ways than I can probably count.

I’m wondering if all these experiences with this child have made me more acute?  When things are just typical…is your life less colorful? Because the black and gray days aren’t as black and gray as those with the autism…or as colorful when you do have very good days with the boy and he talks and engages and hugs?

Do you appreciate your neuro typical child more when the other has issues?  I do enjoy Maya’s motor mouth (most of the time) because I sometimes just think that without it, there would be very little narrative to important verbal story lines of our family. He’s quiet, autistic, and shy.  He is also a mumbler with a speech impediment.  Without her play-by-play, color commentary…her chatter, I think that bucket would be a lot emptier. Again, so maybe I’m more acute than I would have been to the positive angles of this constant talking of hers?  Of course, there are days when she argues back…

I’m sure this posting is jumping all over, but what I’m certain about is that I’m rarely sleepwalking, rarely apathetic to my daily life.  My days are much more acute, positively and negatively, because of my child’s condition.  It does give me clarity, and it has probably rubbed my patience to the nub too.

Is it too much to say that Demetrius’ autism has brought a level of ‘life awareness’ to me that I didn’t have beforehand, and if you weren’t experiencing something similar, would you understand what I mean?

I’m also wondering if it is a somewhat muted experience like what they say those who have near death traumas go through afterwards.  They are more appreciative and exploratory…they feel more happiness and more pain.  I wonder this has elements of that.

Hmmmmmmm….I know I’m not sleepwalking.  I also know I better get my ass back to work. I don’t get paid to talk about my feelings and thoughts!

Posted by Jerry in 19:53:07 | Permalink | Comments (3)

Wednesday, October 1, 2008

Sleepwalking? I don’t think so….

Sleepwalking through the day…

Someone said this to me.  I had the thought that since Demetrius has been diagnosed I haven’t really had a day like this…with him around. However, have I had them at the office or traveling for business?  I think so. 

I don’t know if this is a positive thing or not.  But just a thought that kind of hit me like a ton of bricks.

Anyone else have a realization like this?

Posted by Jerry in 21:12:15 | Permalink | Comments Off

Friday, August 15, 2008

On The Roof

You knew this posting was coming, right?

Kim’s painted the window shut, and this morning (THIS MORNING!) she literally had it planned to nail D’s window shut.  He had gotten in enought trouble for opening it sticking his arm out of it the past week. So of course, just before I left the office for home last night, Kim calls.

“Hey, Demetrius was on the roof. I got him back in, and then I painted it shut again and nailed it shut.”

With the way our house is situated on our small piece of real estate (we have a pretty good sloping back yard), the drop from Demetrius’ window to the ground, I estimate, is about 30-35 feet, easy.

Now, he had gotten it good from Kim by the time I got home, and I was angry and scared (he had told Kim he wanted to pretend he was Santa Claus), because this is one of those things where you think to yourself, “He has no fear (typical autistic active kid) and has no sense of danger.” He’s gonna kill himself someday.  That said, I had to ‘talk myself down’ – probably 100 kids climbed on their rooves yesterday, and got scared and had to be talked or helped down.  This isn’t that uncommon for 8 year old boys!

So I took his new super hero cartoon DVD away from him. Now, if you take any super hero stuff away from him, period – nuclear meltdown – and you know what, he didn’t even say boo.  He knew it was coming.

I can’t decide if this is a little boy issue, or an autism issue.  It seems to be something he was set on doing, and is it some sort of stemming issue (Kim said that as soon as the window was nailed shut, all he did was work to try to open it).

I do know it is a year off the back end of Kim’s life, issue.

Posted by Jerry in 14:58:21 | Permalink | Comments (3)

Thursday, June 5, 2008

Lose, Win, Win

Yesterday, I was working in the home office when Demetrius came in from a day out with Mom, Maya and his friend Joseph (they were all going to change and go to the pool).

Demetrius: Daddy, we went to the museum.

Jerry: That’s great Demetrius, did you have fun?

Demetrius: No. But we went to Wendy’s and now we are going to the pool and that is fun.

If I could be this honest in life, and pull it off without anyone having their feelings hurt, life would be so easy…..

Posted by Jerry in 15:32:14 | Permalink | Comments Off

Wednesday, March 5, 2008

Autism News

As I mentioned earlier, this is a new feature I’d like to try out in one of my weekly postings. Let me know if you like or dislike. I’m not sold on it either way at this point.

Autism is now in the news cycle for this year’s presidential election. See here for a bit from the Republican front-runner, John McCain.

You know, this is one of those ‘duh’ moments. I’ve not seen a news story that tries to explain in laymans terms the difference between auties and aspies, but it seems there should have been one I would have seen previously. Here you go with at least this doctor’s attempt.

The Autism Society of America is hitting the road and heading up to Washington DC for a couple of days of lobbying. Find out more here.

Confused about vaccine discussions? About.com’s autism blog tackles it today. Click here.

Barnes & Noble
and Autism Speaks are teaming up to do some storytime events at local stores in some markets across the country. Click here to see if there is one in an area by you.

Hmmm – worried about your autistic kid’s sibling(s)? Read this at Medical News Today. It is something to mull over.

Posted by Jerry in 15:12:03 | Permalink | Comments (3)