Monday, March 31, 2008

Media Stories

Coming hard and fast before Global Autism Day….

CNN Piece here.

Web Site for the Interactive Autism Network here.

Posted by Jerry in 19:56:22 | Permalink | Comments (1) »

CNN Cost of Autism Story/Quit Just Sitting There!

While Kim and I were making breakfast yesterday, this piece from CNN ran on Headline News (Click the one that is through Yahoo!, the others have expired).

Here is where I run a little counter to other parents, and am much more in line with the financial planner. It is my opinion that you have to take the long view on your child, his/her needs, and the overall health of your family…espcially for the fact that the impact of having an autistic child in your life will be in the millions of dollars range.

Yes, every single year, Kim and I have thousands of dollars of debt due to therapies/meds/etc… Some out of pocket, some in just co-pays. It adds up. Since D’s been diagnosed, I’ve been using my annual bonus to bring that balance down to zero, only to see it creep back up. That’s just our life. That said, I’ve seen and heard of too many folks breaking the bank on one more ‘maybe’ or ‘what if’ without thinking way out ahead if the return on investment is worth it. Some of these, um… ‘potential cures’…are risky both for your child’s health and your long-term financial health.

Can you put a price tag on your child speaking…yes, and no. No, it is priceless if your child can finally converse with you – I get that…yes, it does cost. And what’s the trade offs you are making? If it is the annual trip to Maui with your sorority sisters, get over it! Or your golf trip to the Fla. Keys with your high school buds….get over it. Save the $4K and put it towards more OT & SPT to get that kid speaking….but you really, really, really need to weigh the beneifts of the $4K if it is a difference of saving for retirement or not (I simply have no patience for big time spenders to live life like when you were a DINK.  I do have infinite paitence if weighing the benefits of your family’s overall long-term health).

Let me be clear, I’m not talking about retirement like Amerprise commercials want you to think about retirement:  Viagra, 3 hour boners with your wife constantly smiling (because of the Viagra or 17 facelifts, who can say?), on a beach, eating lobster… I’m talking retirement in terms of not having to vacate your house and living month to month on a bet that Social Security ‘might’ be there when you are in your golden years.  I’m talking retirement in terms of being comfortable and being healthy enough to continue living a life that is fulfilling, and probably helping out your special needs child.

Look, I’m not saying it is an either or scenario, so don’t get hot and bothered. I’m saying considerations about the family’s financial health have to be taken into your decisions on building a state-of-the-art therapy room or not. I still put the exact same amount of money away every year in Demetrius’ college fund, as I do Maya’s. Maya will go to college (hopefully) and maybe Demetrius will (hopefully), but if not, he’ll have a stash of cash available. Further, I always fully fund Kim’s Roth IRA. Why? Well, what if I drop dead at 45 of a heart attack? Have I put her in a position to be able to be financially flexible in the choices she’ll have to make on her and the kids behalf? (By the way hubbies – I would suggest getting the biggest life insurance policy you can also, in case that happens.)

I’ve always maxed out my 401Ks at work too. Same reasons.

We don’t get to go on all the family vacations we would like to, we don’t have the best furniture, or other things – but I can rest at night knowing I’m balancing out Demetrius’ needs along with the family’s financial goals – which is the best I can do in this life.  And Maya has needs to…she’ll never not do an art lesson she really wants to take because Demetrius could get just one more (fill in the blank).  Her life isn’t simply second fiddle to Demetrius’ condition. 

Also remember this – at some point, you and I are going to be at an age where we simply won’t be able to work. We may go longer than some mandatory retirement age by substitute teaching, driving school buses, whatever, but if God gives us a long life, at some point we’ll simply be unable to ‘plow the field’. I don’t think most of our autistic children are equipped to take care of us in our old age…and we are burdening, indirectly and unfortunately, our other children to have to help care for their autistic siblings in their lives (thus, another reason to save as much money as you can, so the financial burden doesn’t rest on Maya’s, or your other child’s, shoulders!) – I don’t want to be a poor old person with nothing in the bank also relying on Maya.

Really, really think about the long term and your dough.

Final soapbox point I want to make – don’t forget to spend some money on yourself once in awhile. I’ve known a few folks who have tricked out therapy rooms and state of the art play areas for their autistic children. But they don’t do for themselves. Moms – go get yourself a pedicure or go shopping, or whatever floats your boat, once in awhile. You carry the load with most of these kids – guilt-wise, worry-wise and running back and forth between therapy sessions and IEP meetings, etc…us Dads? Well, often we get to go to an office and deal with other adults for 8-9 hours a day, and worry about corporate priorities, etc…that take us away from the every day battles that come with being an autistic parent. Many of you moms never get that ‘break’ daily. Fifty bucks on yourself is a good, and healthy, thing for each of you…and your family.

I could keep going, but seriously – do what they say in this piece! Talk to a financial planner!

—–

On that note……yesterday we were doing a house clean up day….pick up the basement, clean rooms pick toys up in every room…which leads to fussing parents and grumpy kids. While Maya was picking up her markers I was sitting at the kitchen table doing the monthly bills. She looks at me and says, in that angry little kid voice: “Daddy, I’m picking up and Mommy’s picking up and Demetrius is picking up – and you are sitting at the table, writing!” “Quit just sitting there! You aren’t working!”

Oh Maya, I wonder which is more painful…paying the mortgage or picking up your markers?

Hmmmmmm…..

Posted by Jerry in 14:19:13 | Permalink | Comments (2)

Saturday, March 29, 2008

Second Life and My Little Heart Attack

Thanks to Aimee for this CNN piece. For the past couple of years, a colleague of mine, Dan Greenfield, and a few others have bantered back and forth about the value of 2nd Life. I see, for the average company, very little value in the platform. Others see potential that I simply don’t.

That said, I’m discussing it from a ‘business’ stand point. I think this story outlining its value for Aspies and Auties is a great example of its value on the personal side of the equation. If being online and having an avatar helps this community of people feel connected in a way that the real world cannot (for whatever the reason: social issues, the real world is stimulation overload), I’m all for it…. as long as these aren’t kids in their bedrooms all day not interacting with their families and people in their lives at all. I think most parents worry about this with their children, regardless of condition, any way with the Internet…but I think more so with people that simply have a hard time of coping in our world, period. Adults aspies spending hours in 2nd Life – hey, that’s a choice of theirs….but 10 year old high functioning autistics that need some social skills to navigate the real world, that’s a different situation all together.

Just from a business perspective, the only legitimate use of 2nd Life I’ve ever heard of is the CDC using it as a tool to tell folks around the world of potential situations, or holding a 2nd Life seminar on ‘an island’ to discuss an emerging issue. It is one tool in their arsenal.

Of course, during the seminar, there is a fear of being attacked in weird and obscene ways to disturb your ‘press conference’. See here for what I mean.

—-

This morning was beautiful, mid-60s, with the ever so slight breeze out of the South, so with a warm feeling. So Buddy and I, after the kids games, went for a six mile run. When I got back, I hopped in the shower to take Demetrius to lunch (and Kim and Maya were leaving for a birthday party). When I got out, I could hear that there was no ‘kid noise’ in the background. I called Kim:

Jerry: “Did you take Demetrius with you?”

Kim: “No, why?” (And I can hear Kim’s fear shoot straight up in those two words.)

Jerry: “He’s got to be around here somewhere. The garage door is closed.”

I search the basement (where he sometimes convienetly, ‘can’t’ hear you); the studio where the computer is (see if he is intensely playing a game). Nowhere to be found. All the windows are closed, and all the doors are locked. Hmmmmm…..I’m not in a panic, but I’m getting there.

I go out on the patio, look around (could he be out back, someway, somehow?)…nope. I search the house again. Nope. I’m officially in a slight panic. I’m not calling Kim though. I need to ratchet this up one more level before I ruin Kim and Maya’s time at the birthday party.

Now, as Pooh Bear says I need to, “Think, Think, Think…”. We are supposed to go to lunch and a carnival (carnival didn’t happen, rain showers started)… would he not have waited? The doors are shut to the front of the house, so he didn’t decide to be impatient and walk…..

I open the garage door. He’s in the backseat of the car. He’s playing with one of the 20 or so action figures he brought into the car with him.

Demetrius: “Hi Dad, are you ready to take me to lunch and then the carnival?”

Daddy: “Hey Demetrius, I’m just wondering, how long have you been the car with your toys?”

Demetrius: “20 hours. Let’s go!”

So I get my wallet, my watch, my cell phone, and off we go.

Kim was going to stop at CVS on the way home to get a refill on one of Demetrius’ prescriptions. Maybe she can pick up some heart pills for me to take after this ‘small ordeal/heart attack’?

Whew.

Posted by Jerry in 18:33:35 | Permalink | Comments (4)

Friday, March 28, 2008

Friday Stuff

As we move closer to Global Autism Day I suspect we’ll see lots of pieces for media story postings. I’ll push the ones I see to you. Here is another from a CNN employee who is a recently diagnosed Aspie.

I’ve been noticing more and more ‘changes’ since Demetrius has been on the Prozac. When he began his ADHD meds a few years ago EVERYONE EVERYWHERE saw the differences, but I would say these changes continue to be subtle and right there if you are looking for them.

He still plays with his hair, but when you tell him to stop, he is actually stopping. Last night (before I got home) he tried to turn the television on, and of course, was blocked. He pushed enough buttons in his attempt to ‘un-block’ the TV that it wouldn’t work until I got home and basically re-booted it.  By that time, TV time was over for him, and we just were able to catch the end of Hannah Montana. No fit, no melt downs. He just ‘understood’ and went in the basement and played. Sure, he fussed about having to get ready about bed :15 later, but what kid doesn’t do that?

This morning he wouldn’t eat his breakfast and Kim was fussing at him…so I told him if he didn’t sit down and eat (sometimes an issue with this boy) that I’d take his super heroes from him for one week (Grandparents – get over it, I have to discipline your grandchildren at some point) for repeatedly not doing what his mother asked. No fit, just sulking and eating bagel.

Of course, I noticed a few minutes later that I was being ‘webbed’ by him. (In Spider Man, when the Web-Slinger doesn’t want to hear somebody, he shoots some webbing into that person’s mouth to shut them up….Demetrius will do this also, it is a form of ‘pretending’ resistance!) But I can live with that.

So these are the little things I’m seeing. It must taste awful though, everytime he finishes it in his juice (which we mix the meds in), his eyes water.

All that said, I’ll leave you this weekend with Maya in her Hannah Montana get up. I just know I have a cheerleader in my future:


Hannah Montana Guitar, Headset, bracelets, glittery concert uniform…..

Posted by Jerry in 14:09:45 | Permalink | Comments (2)

Thursday, March 27, 2008

Thursday is News Day

Some autism news for ya’ll today:

CNN is doing pieces in anticipation of World Autism Day.  Here’s the first.

In London the doctor claiming a link between MRR and Autism is before the General Medical Council in London fighting for his practicing life….

Read this press release/statement from the Autism Treatment Center of America, CEO.  Kim and I have both said that at times, what was recommended to us for Demetrius, felt more like training our dogs than anything else.  It wasn’t for us, but I see some others felt the same way.

Magic Amino Acid?  Read about it here.

Go virtually test drive a Chevy Malibu.  Read here why each of us need to do it.

Hmmmmm – read this story in the Chicago Tribune, and if you subscribe to Oprah Magazine, read the full article.

And this is just a great, fun story I heard on NPR today about children and ‘cursing’.

Posted by Jerry in 14:48:00 | Permalink | Comments (1) »

Smelling Like a Monkey!

I always find it quite cute on birthdays when we sing the ‘birthday song’ how Demetrius will get so excited he runs out of the room.

Its Kim’s birthday today, so this morning we sang the song and he exited stage left and did a few laps around the downstairs chanting, “Mommy’s birthday! Mommy’s birthday!”

Tonight we practiced the ‘goofy birthday song’ before the birthday dessert:

Happy Birthday to you,
You smell like a zoo,
You look like a monkey,
You act like one too!

We break into it over dessert, and Maya stumbles, she forgets the words…but not Demetrius….he belts it out, top of lungs, breaks into a cheesy smile and eats the whip cream from the top of his strawberry shortcake.

He stole the show!

I think this is a great birthday gift for  his mother, don’t you?  In fact, I hear the two of them in his bedroom, cuddling, and he’s singing it to her right now.  Lucky girl, serenaded by nightlight on her birthday….

Happy birthday Kim!

Posted by Jerry in 00:57:56 | Permalink | Comments (1) »

Tuesday, March 25, 2008

Soccer (Baseball?) Practice For 1st Grade Love Bugs

I think sometimes the line between neuro-typical seven-year-old and autistic seven-year-old is very thin, and gray.

Demetrius had soccer practice at the local church last night.  As I’ve blogged before, I’m on the field for most of it trying to redirect Demetrius back into the practice/game, so he can bond with the boys.

This means Demetrius plays fullback (in the back), when they scrimmage, because he’s not wanting to be in the middle of the field where he just kind of skips and gets in the way (he was running the direction the ball was going yesterday). 

This is HUGE. This means he is paying attention, but he still really doesn’t want to kick the ball too much….
But he’s getting more involved. Like we say all the time, baby steps.

While standing there next to the goal, the goalie, who we will call….Fred (to protect the innocent), was standing there.  He grabbed my shirt and pulled.

Fred: Mr. Coach (I’m not the coach, but because I’m on the field, many of the boys think I’m an assistant coach)?

Jerry: I’m not the coach, but how can I help you, Fred?

Fred: When do we get to hit the ball with a bat?

Guys, we are a full three weeks into soccer, and this kid has been waiting to play baseball.  He isn’t sure what he’s doing!  He is finally getting the nerve up, I think, to ask about playing baseball….at soccer practice.

So I just kind of smile….

Jerry: Fred, this isn’t baseball. This is soccer. We kick the ball with our feet. There aren’t any bats in soccer. If you want to hit the ball with a bat, you need to sign up for baseball. But baseball season hasn’t started yet, I don’t think. You should talk to your mom.

Fred: Okay.  I’ll ask her why I’m not playing baseball and am playing soccer?

Jerry: Yea, um. Okay, you ask her that….

And I wonder exactly what are the differences between my boy and all these others on the field (at times)?

At the end of practice we work on our throw ins.  One little boy, not Fred, we’ll call him Joe, yelled at his mom that she left his water in the car during the break.  The  mom runs, gets his water, and comes over to Joe who is in line practicing his throw ins.

Mom: Here you go, Joe (kiss Joe on the cheek).  Joe gets real embarrased and almost starts to cry as the mom runs back to the sideline.

Moms, there are times and places to kiss your boys.  But not during practice, in front of the other boys.  Now, 1st grade boys are pretty much unaware of their surroundings…so Joe didn’t get a bad ribbing. But the dads gave the mom a bit of a talking to.  She chuckled, said she forgot and recognized that Joe was a touch embarrassed.

Moms, please, during sporting events, don’t give your boys pecks on the cheek.

Of course, I can’t say much, Kim was yelling at Demetrius during the scrimmage: “Pay attention to the game, Love Bug.”

Moms….sigh.  Oh well, maybe it will be different for Fred at baseball practice with a bat in his hand.

Posted by Jerry in 21:28:59 | Permalink | Comments (4)

Monday, March 24, 2008

Is Maya The Next Annie Lebowitz?

I dunno, but you get funny pictures from her when she snags the digital camera.  Not all are here, but:


Mommy took a picture of Maya with our neighbor girls, the Philsons (Kennedi (L) and Sydney (R)).  Kennedi is in her ‘model’ pose.

Maya then got hold of the camera while Kim was making a salad and talking to her sister, Aunt Rachel:


We have 37 pictures from Maya’s latest pad and pens she got from the Easter Bunny.  37-of-them!


17 pictures of sharks from this packet of shark trading cards Demetrius got somewhere (I think in a kids meal box) recently


Would it be worth our time without some sort of self photo?


Kim, kitchen, on phone, cooking, 2008.  Notice all the refridgerator art. This is ode to the suburban life, 6 year old view from step stool…. possibly solid MoMA material?  Hmmmmm

Posted by Jerry in 13:56:02 | Permalink | Comments (1) »

Sunday, March 23, 2008

Easter Morning Photos


Maya and Demetrius looking at their Easter baskets.  Maya got a humongous chocolate Easter bunny and High School Musical DVD… Demetrius got a ‘Golden Egg’ from Wonka candies and Bee Movie


That Easter Bunny hid some eggs in the family room…..


Maya found two eggs…(I don’t know why they are showing in the picture as just white, they were colored/decorated), and we found all 17 of them (thank goodness, they would begin to, ummm, smell, if we didn’t)


After some chocolate eggs, we settled in to watch High School Music at 7:24 am.  Kim went back to sleep, I uploaded these photos!

Happy Easter!

Posted by Jerry in 13:10:42 | Permalink | Comments (1) »

Friday, March 21, 2008

A Completely Male/Guy Blog Posting About March Madness and Some Demetrius Stuff Too…

Most guys just love this time of year.  Ah, March Madness.  It actually, in my mind, runs a little bit out in front of football’s Bowl Season for college sports, mainly because it seems everyone’s school is involved, and it is the last hurrah before college sports takes a hiatus until football season starts up in August.

Once, about ten years ago, my friend Alan worked at ESPN.com.  He secured us tickets to the opening round of March Madness.  We saw third seeded UNC lose to Wyoming-based 13th seeded Weber State.  Now we live in the Southeast, and how funny, no one I know that attended UNC seems to remember this game.  But is was a day of hanging out in an Irish pub, watching basketball, and then hanging out again in an Irish pub.  For guys with no kids, in their twenties, and still not quite properly trained by their wives (note, I didn’t say we weren’t whipped, just not fully compliant yet), this was a great day.

Grasso, why are you writing this?  This is an autism blog, not a sports blog? C’mon man….

Okay dear readers, hear me out…..

So, Demetrius has absolutely no interest, whatsoever, in sports.  I watched a total of probably fifteen minutes of college basketball this season (I get to watch no more than a fairly semi-regular smattering of sports).  Further, without an ally in a one TV house, you lose the ‘lets watch sports’ argument pretty much every time.  We aren’t (outside of Demetrius) big TV watchers anyway, so my sports consumption has siginifcantly dropped each year the kids age (they get more active, there is more to do, and less down time to watch a game anyways).  

When I do attempt to sneak some sports on the tube (and it isn’t after the kids go to bed), Demetrius immediately shows up and demands Nick, Disney or a movie.  Kim may show up too with a, “Are we watching sports again? Isn’t anything else on?” (Kim – you and I both know that this is a legitimate comment from 1999 in regards to me and the TV, but now… you are just being a blowhard.)  So I really don’t fight it, but clearly, I harbor ill will towards these two people that sleep in my house, in particular to this touchy subject.

So, yesterday, at the 23rd hour, the office mates I’m working with at this time talked me into paying up $10 to join their office pool.  I did.  Why not just throw some cash to the wind? I listen to just enough sports radio to have water cooler discussions with guys (really, they don’t want to talk SpongeBob in grown up land of men…they want to talk Brett Favre….), but not really pull off successfully bracketology. Or so I thought.

So going off of experience, a little bit of knowledge and objectivity from what I hear on the radio…I made my picks. And you know what, for the first time ever, I went undefeated in an opening day of the tournament. Is this pure luck?  Possibly.  Is there some logic to this luck?  Possibly too.  I can’t over think anything because I don’t know anything in depth!  And whaddya know….. I’m sure I’ll flame out. But I was floored when I checked the scores this morning from the late games on the West Coast.

Last night, after we wrestled while watching Hannah Montana and we were closing up the downstairs to head up for baths and story time, I tried to sneak in a little score update, I quickly changed over to ESPN and Demetrius scolded me:

Daddy! No football! (It’s all football to the boy, even if I watch a little soccer, which he plays, he calls it football on the TV).

BTW – I don’t know if after two days we can say the Prozac is working or not in calming his OCDs, but we had a really good conversation in bed after story time.  D’s friend Joseph is spending the night tonight and we are going for pizza to Carmines.  I said to Demetrius (teasingly) that we’d get sausage and mushroom pizza. And he said to me with pretty proper and intense 8-year-old inflection:

“Daddy, that’s what Mommy likes on her pizza. Not kids.  That’s really icky.  YOU NEED TO THINK ABOUT THAT!”

Oh, I am kid, I’m thinking about exactly what you are saying! I’m thinking it is great to hear you say that!

I wonder if Carmines will have the games on so I can watch while the kids eat…..  

Posted by Jerry in 13:34:08 | Permalink | Comments (5)