Friday, May 30, 2008

Birthday Boy…But Carrie Bradshaw Comes First

Tomorrow its the big 39. I don’t feel 39. Except at, like, 10:30pm at night (both nights of the year I’m up that late). For some reason my ankles and lower back just start aching at that hour, and my response time drops very quickly.

But other than that I’m still the same guy I was 15 years ago. :-)

So what, you ask, what am I doing for my 39th birthday? I like to say I’m getting ‘in touch with reality.’

Kim has a friend from college (one of her bestest friends, as Maya would say) who lives in Denver is flying in with her five year old son. I’ll be watching Charlie (the child’s name) and my two while Kim and her friend go out to see Sex And The City.

You know, they haven’t seen each other, “In, like, forever…” and I have a birthday every year.

I like to keep it real.

I think we’ll go swimming, and then we’ll grab some food somewhere. Maybe pizza for the kids.

Can’t be too late though – I don’t eat cheese any more and spicy red sauce I can’t take after about 8pm or it gives me too much hearburn.

Posted by Jerry in 17:19:02 | Permalink | Comments (4)

Thursday, May 29, 2008

Desperate?

Monday I had my first 10K of the summer.  Soccer is over for the kids (for the summer) and now I can focus on running races and long runs with the running club on weekends. My battery is charged, as they say, and I am feeling very good about this season.

One thing about runners at a race, I would say almost uniformally they are morning people…like me!  So you get folks that are excited about a race, and chatty, beforehand as everyone congregates and stretches out, etc…like the dude who parked next to me.  He won the masters event category in the race and was a 1984 Olympic marathoner. You would have never known it because he was just a nice guy that was talking about how he forgot to bring a cup of coffee on the way and he was dying for a small cup of coffee (clearly wasn’t affecting his ability to burn rubber once the race began).

Another dude and I (I think he is actually going to start running with the running club on Saturdays) chatted about Autism.  I run races, exclusively, in my Autism Walk tee shirt from 2007 (we all have our reasons to run, I have mine, and this is it).  His son is non-verbal, and making strides.  We spoke about the costs of therapy, where are the lines with what we are willing to pay (I’ve blogged endlessly about this subject) and he has two other little ones at home (not on the spectrum).  Once it got close to race time, we separated and headed off toward the line. 

One of the ladies in the running group had a boy in her pre-school class that’s on the spectrum, and the parents wanted him mainstreamed, while the school district pushed back and wanted him in a special needs class.  We traded emails, and we discussed that the boy was mainstreamed, to be pulled out for ‘specials’ at the start of the year. I’m glad for them.  At least they’ll get to see where the lines are….

She actually had a friend she didn’t know was running and went to chat with her quickly before the start of the race, so I was in the crowd waiting to begin…and felt a tap on my shoulder. Just a woman waiting to race.  She said she just happened to overhear the two conversations about autism I had, she also teaches pre school in a different suburb. 

“Do you think autism is at a pandemic level?” (One of the discussion points I had that morning…yes, heady stuff for 6:50am before a race).

Jerry: Yes, that’s my personal feeling when you take the girls out of the equation and the numbers drop to 1:75-ish instead of 1:150 with the girls in the mix.

“Do you feel desperate?”

This just shook me.  But it was a bit of a delayed reaction.  My initial answer I gave her was, “No. My son is making his way through mainstream classes, and it is a day-to-day, year-to-year thing with Demetrius, but I don’t feel desperate.”
But while running with the headphones on…

I would change that answer, I think.  First, it is a word I’ve never associated with my feelings or thoughts on autism with Super D.  ‘Desperate’.  I think of this word in some sort of short-term context.  “I’m desperate to hear if I got into XXX college.” Or, “I’m desperate for a cup of coffee.”  But in terms of autism and Demetrius…yes, I think there was a time I was desperate.

It wasn’t to get him diagnosed, because, hell, we pretty much knew by then. But I felt desperate as I fought with insurance companies (and came home to Kim on the phone with the insurance carriers).  I felt desperate, I think when we went through our first IEP experiences…

So desperate is tied to new experiences – therapies, schooling, dealing with insurance companies.  Because we don’t know what the other side may or may not look like, how will the result impact all the other things we’ve built around this kid, etc…but I don’t feel desperate about him.

I really have a hard time to thinking about desperate in the group sense too.  The word feels personal to me.  Would Demetrius’ situation be as desperate to someone that had a parent who had a stroke in their teenage years and was housebound that point forward? They’d have that experience of a hard life and maybe having an autistic child and dealing with it (I’m sure, still painful) would act/feel different than we did.  What is a desperate feeling for me may be something that someone with thicker skin just shrugs off, because they’ve been around the block.

The autistic community seems to have moved away from desperate pleas too…we are legit and this isn’t some ‘unknown’, the unknowns are in the causes and ‘cures’, and the dollars for research are now there – and I don’t think the bucks will be going away any time soon.

There may be some desperation among school administrators across the country on how to accommodate the influx of autistic children (if a pandemic) and how to train the teachers…especially since each child on the spectrum is different with different triggers and abilities, etc…

My final thought here is around what’s next for us and what could I feel desperate about?  Hard to tell – that’s the experience thing I referenced earlier.  What pops up for me is Demetrius being picked on by other boys, that’s something that I just think will happen, and being the type of kid I was, it will hurt even though my belt will be tightened for it.

The other place I can see the word applying would be around school, if he regresses or just gets to a point where he ‘can’t’ mainstream anymore, for whatever reason (educational, social, etc…).  First grade was such a good year (I’m fighting the cynic/skeptic in me that this might have been the highpoint before academics get too challenging), I’d like to have more of those and less of those years of negotiating we’ve had in the past.

Desperate.  Just a word, no?  So many thoughts one can have around it running a 10K? ☺

Posted by Jerry in 16:04:56 | Permalink | Comments (2)

Wednesday, May 28, 2008

Caught Ya

So we have almost finished the home office, and the way the room is laid out….you walk right in and you see Kim’s desk and computer, etc….in front of that is a sofa facing the wall with the ‘new TV’ with the DVD player in it.

But my area is about the size of small office cube…really a cubby in front of the window facing the front of the house.

Now, unless you turn and look, you don’t see any of my office set up.

So I’m working on a PR plan for a client, and I see Kim and the kids get home from swimming lessons, Demetrius scoots in the house well ahead of his sister and mother….works his way up here into the office.  Doesn’t see me working at my desk and he attempts to turn on the TV and watch a movie…

Jerry: Hey Superstar, whatcha doin?

Demetrius actually hops startled…..

Demetrius: Daddy, why are you here?  Shouldn’t you be at an office?

Jerry: Should you be trying to watch a movie on a TV you aren’t supposed to turn on, in a room you aren’t supposed to be in…

Awkward silence here….

Demetrius: I love you Daddy (and he takes his movie and backs out of the room, covering his butt {you know, in-case-of -spanking-butt-covering}, smiling at me that big ol caught in the act grin)….

The kid is a pro, now he’ll look over before he comes flying into the room to see where I’m at, I’m sure….

Posted by Jerry in 17:16:30 | Permalink | Comments (1) »

Tuesday, May 27, 2008

Try Not To Visually This Happening To Your Child

Buddy Phil passed this to me…..

I can’t imagine this happening to Demetrius. But I have to, because someone actually did this to a little boy….

An internal review? Please…..

Posted by Jerry in 22:40:37 | Permalink | Comments (2)

The Human Camera

My mom found this online. Very cool.  Hope everyone had a great weekend.

Posted by Jerry in 14:57:44 | Permalink | Comments Off

Friday, May 23, 2008

Another Year

Kindergarten and first grade are gone…and the days of summer are here. They were both so awesome this year that they got iPod Shuffles for a great 07/08.  One friend asked me what did I get when I was a kid for graduating each grade?

I thought for a moment….

Jerry: I got grounded.

Lets just say I tended to blow off the last grading period of the year as a kid.  I deserved a few weeks of R&R spent in trouble.

Glad I don’t have that with these two….

Yet.

Posted by Jerry in 20:46:02 | Permalink | Comments (1) »

Thursday, May 22, 2008

Ebb and Flow

Ebb and flow.

If there is an expression, or exasperation statement, that captures parenting a child on the autistic spectrum, this is it.

Especially one high on the spectrum, or should I write, one high enough on the spectrum that you forget at times that he is actually autistic…and when reality hits, admit he is a bit disabled.

We should see things spiraling a bit and be prepared for them. Throw on the steely armor. I mean, the structure of his day is breaking down as the end of the school year approaches, the teachers are doing less teaching and the end of the school year is what it has always been – managing the chaos of single digit aged humans getting excited for the beach, grandma’s house, Disney World, or some aunt or uncle’s lake house. Whatever it may be…the thoughts of all are ‘there’ and not ‘here’, on structured classes with routine.

For an autistic kid this is just begging for trouble.

We are fighting about TV a lot right now – in the past week I’ve taken almost ten of his favorite movies away because he can’t stop trying to play them in the new TV (this was expected) and constantly throwing fits to watch more TV. We are belt tightening here, and we are always ready for this battle with this kid, and we always will be, I suspect.

But the realization part comes more into play with swim lessons. Kim is struggling with his lack of involvement (is he just not interested? Have his meds run their course and he’s not on his A game by 4pm?) but is hopeful that once school is finally out (and she can get him on his ‘summer’ schedule) and swim lessons flip to morning practices he’ll be more engaged and interested.

She tells me that while she is watching Maya, a mother calls to her and points to Demetrius and he’s climbing on the outside of a jungle gym by the pool, standing on the outside railing of the tallest slide in the area…a good 20 foot drop if he falls. He has no fear and now Kim has enough for the both of them. She coaxes him down, she ‘sternly talks about things’ with him quietly when he is finally down and he reluctantly gets back into the pool…

But as soon as she turns her head toward Maya again she is pulled back to Demetrius by another Mom – he now is swimming with his shorts off, stark naked. While it does solicit a chuckle from you reading this – it doesn’t with Kim, because this is the umpteenth time he’s taken off his skivvies while at swim lessons. And while it was ‘cuter’ when he was 4, it is less so now that he’s 8…and not every mom there recognizes ‘this is just D’ and some are less understanding the older he gets.

Maya asked Mommy if she watched. So Mommy lies.

I get home and Demetrius has been banished to his room. Kim’s exhausted and you can see the ‘autism lines’ back on her face – they come when she’s furrowing her brow worrying about the boy and everything going on, frustration from his actions and that reality pushing front and center, and pursed lips from a clenched jaw. She’s not talking and Maya is eating her dinner, talking to a mommy half paying attention.

I go up and talk to Demetrius, who is trying to get past my passwords on the new TV in the office instead of chilling out in his room. We go to his room, we have a talk. Not a ‘father knows best’ talk, a serious ‘you are driving your mother ape shit with this Demetrius’ talk. He tells me he’ll ‘try’ at swim lessons…but even if he believes it, I know that it is what it is…and this has nothing to do with trying or not trying. It has to do with being autistic. I believe he will try, until he’s over stimulated and his tipping point is crossed.

I go downstairs and pay attention to Maya, who needs someone to talk to. I listen. Amazing how much she can tell me in about five minutes. While he’s spinning a touch out of control in the melee of the end of the school year, she’s reveling in it and being reminded on a daily basis that she’s a first grader-in-waiting and there are only ‘3 days’ left until she’s no longer a kindergartner.

And like so many nights since autism creeped into our lives, Kim is worn out and sacks out in bed with Demetrius, lying next to him so he’ll go to sleep (yes, I cuddled Maya until she passed out, so she got her snuggles too), I am alone to think too much.

Thoughts about this are top-of-mind as I flip open my laptop and click on the Lakers/Spurs 1st Quarter, “Ebb and flow. Just a couple of weeks and we’ll be in a new routine and he’ll start to flow again.” “He can’t be taking his shorts off, it is just socially wrong at eight years old. Where is this coming from all of a sudden?” “What if he fell?”

I kind of smile thinking that now I realize I’m saying to myself it will just be a week or two and he’ll back in the flow…instead of a therapist or expert telling us we’ll start to see results in 3-6 months. Just a week or two – I believe…I hope.

Belief can become less of a sure thing when the house is quiet and it is just you and your thoughts worrying about your 8 year autisic kid…swimming naked.

Ebb and flow.

Posted by Jerry in 21:03:17 | Permalink | Comments (2)

Wednesday, May 21, 2008

Autism News

The State of Florida has passed their bill into law. See here.

Here is an analysis from the Minneapolis Star Tribune on the church story I blogged about yesterday.

Some of you might be interested in this from ABC News’ web site yesterday.

We’ll see how much coverage this gets in the near future.

A little mother’s day ditty I picked up about a Mom and her autistic son.

Autistic boy gets left behind on a field trip in St. Louis. Though I have to say, this is barely an autistic issue. It happens to plenty of kids on plenty of field trips to plenty of places across the USA. My Dad and I saw this happen once at a McDonalds on the way back from college one summer. The teachers and parents do a head count, do it again….come up one short….panic sets in….we are missing a kid, he’s at the zoo still. Panic sets in for the other first graders….what do you mean we have to leave McDonalds….let him suffer!

Posted by Jerry in 13:17:54 | Permalink | Comments (1) »

Tuesday, May 20, 2008

So Sad

I hate these types of news stories.

Posted by Jerry in 15:25:50 | Permalink | Comments Off

Demetrius – Chess Master

I found out something about the boy I didn’t know previously, that being he’s a bit of a chess fanatic.  I always thought he was ‘mirroring’ Geri’s Game (The Pixar Short that played before Monster’s Inc.) but no, he plays it on the computer at school all the time.

After his haircut yesterday, we went to Target and I went to get him a chess board and he says to me: “No daddy, Grandpa is bringing a chess board to the beach to play with me. Get me a computer game of chess.”  So I did.  He beat the computer at the  ‘novice’ level.  Intermediate gave him some trouble and he got frustrated and moved on to another game…but I’m kinda impressed.

My dad is a huge chess fan. I’m really not a board game guy (I like Risk once every blue moon), but looks like I am going to have to learn here being wedged in birthorder between two chess masters….

Bobby Fischer I aint…..

Posted by Jerry in 15:09:33 | Permalink | Comments (2)