Friday, February 29, 2008

Amanda Baggs Blog

Thanks to Marla for giving us this blog (Amanda was one of the women highlighted in Wired).

I’ve added her blog to my blogroll.

Posted by Jerry in 15:51:47 | Permalink | Comments (1) »

Now An Ear Infection

Winter ends here in Atlanta, in my opinion, sometime in mid-February — right around Valentines Day.  We are a few weeks later than that, which means we’ve had a month of 60-plus degree weather sprinkled in with a few 40-degree days. Perfect for kids getting sick (well chronicled on this blog over the past week).  Demetrius was the first to get better, and then the first to catch a second bug – yesterday we took him to the doctor (I’m playing a Mr. Mom part here) and he’s got ear infections in both ears. 

He was great – I can’t imagine with all of his sensory issues (he hates having his ears looked at, being poked/prodded, etc…) and then having discomfort/pain on top of it.  So, as soon as he was mollified that he wasn’t getting a shot (his sister was being a total little S#*T by telling he was going to get a ‘big one’) he sat through the ordeal.  The payoff was worth it – there’s a Dunkin’ Donuts right down the street. 

The real worry with Demetrius is this: when he gets sick in winter, he tends to get sick – alot. He’s one of those kids where when his immune defenses are challenged – they tend to stay ‘down’.  He often gets and stays sick longer, which of course begins to take its toll on his schoolwork and ability to stay focused.  This is the fear.

That said, the weather is supposed to be warming up next week in to the mid-to-high 60s here.  If we can kick this ear infection maybe we skirt the potential downturn.  He’s had such a good year this year, I’d hate to see him take two steps back  at this point.

Posted by Jerry in 15:42:29 | Permalink | Comments (1) »

Thursday, February 28, 2008

Autistic Story In Wired

I read the Wired piece I wrote about earlier in the week. Fascinating. The crux of the piece is that more research might need to/should go into how the autistic brain works, versus just finding a ‘cure’. The piece profiled a few doctors and two exceptional women who are trying to change the way the medical and ‘overall’ world look at autistic folks.

The tipping point of the piece is the ‘difference model’ – a theory that past research and studies about autism spectrum intelligence is flawed/wrong – because the methodology is incorrect.

Standard tests focus on measurement of terms that are acceptable to us – the ‘neuro-typicals’….but not all brains work the same way…. that if we study how these spectrum folks operate differently, and find a way where we can work together – that these folks may actually be ‘exceptional’ beyond the cheesy terms we use to talk about special needs kids.

So what’s next? Well, mostly a change in thinking about the issues is what needs to take place, according to the author. But the rub is that if that happens, then the risk is that all the autistic funding might start to dry up…so what to do? Get more money to solve ‘the disease’ or change the conversation to become more accurate (according to this piece, at least)…and see some these monetary gains reversed.

I’d love to get your opinions on the piece….

That said, you should check out both Amanda Baggs (she’s taken down her site, but here’s a great place to start {and the Wired article of course}) and Michelle Dawson…they seem very exceptional people.

Posted by Jerry in 22:28:41 | Permalink | Comments (1) »

Mommy’s Beautiful

Last night Kim was reading and snuggling Maya and I was doing the same with Demetrius. I was talking him up for his great reading (he was really working hard and reading well last night). I turned the lights out and he asked me to ‘snuggle’ for a minute. I’m not a big snuggler, but since he’s been sick – well, of course, I laid next to him and we chatted for a few minutes.

I heard Kim rustling in Maya’s room and asked Demetrius if he wanted a kiss and hug from Mommy while she was still upstairs…I can hear Kim coming down the hall……

Demetrius: Daddy, I want Mommy to snuggle me, because Mommy is beautiful…

Kim heard that and had me kicked out of the bedroom in all of about three seconds as she snuggled in with her first born.

Man, he’s good. I mean, he’s really good. No way he knew Mom was right there to hear him say that – or am I just not giving him enough credit? Hmmmmmm…….

Posted by Jerry in 12:28:53 | Permalink | Comments (2)

Wednesday, February 27, 2008

Early Release….No More Early Movies

The kids had early release from school today, and about 2pm some friends of theirs (and their Mommy), came over to play and chat.  I decided to exit stage left and went for an afternoon movie.  First, I saw Jumper, don’t bother.  Really, don’t.  Believe, you don’t want to bother with this one.  Have I mentioned that it isn’t worth your time seeing?  Good.

However, since I was the lone non-teenager in the crowd, I was not in the position to demand that everyone in the audience be quiet to watch and listen to the amazing dialouge in this film.  Rather, I was lucky enough to listen to the teenage banter.

Now, I’m nearing 40 years old.  On and off since my adult life, I’ve managed to steal away to an afternoon movie – usually it is no more than a quarter filled. Nice, I think, when this is the case. But when I’m in the seat in front of a debate among a group of about a girlfriend who didn’t show at the theatre – and then listen to the girls try to catch themselves back up to the movie over the parts they’ve missed…and then discuss the places they would want to ‘jump’ (really, one of them thought jumping to Destin, Florida would be outstanding)…and with whom from the local college or a senior…and would your cell phone work in those other countries?  And how does he have the right money for these countries?  And where are the pyramids again, Greece right?

Man, I won’t make the mistake of seeing an early afternoon movie on early release day.

Posted by Jerry in 22:43:40 | Permalink | Comments (1) »

Tuesday, February 26, 2008

Some Autism Stuff Today From The World of News…

Being a PR guy by profession, I watch the newswires.  Here’s something alot of us talk about (responsibility check lists)  and is now being sold at a reasonable price of $12.95.

Here’s a piece on autism and adulthood in Scotland. After reading this, I’m pretty sure we won’t be moving there anytime soon.

Here’s the hyperlink to that Wired piece I referenced in yesterday’s posting.

And as much as you might not want to consider Scotland….and I can’t believe I’m writing these words: YOU MIGHT WANT TO CONSIDER MOVING TO NEW JERSEY.

Thimerosal issues won’t go away.  Smoking gun? You read this and come to a conclusion on whether or not this is going to be a hot hot button again.

Let me know what you think about a post like this on a semi-regular basis….  

Posted by Jerry in 19:21:34 | Permalink | Comments (1) »

Monday, February 25, 2008

Is Wired The Voice Autism?

In this month’s Wired they are running another piece on autism (this one I haven’t read yet).  Unfortunately, they haven’t put a hyperlink up to the piece yet.

This is another of a number of pieces on autism the pub has run recently.  Here is a listing of some of them:

Simon Baron-Cohen piece

Face Reader

Early Autism ID

The March Piece Preview: The Truth About Autism – Everything You Know Is Wrong

Autism Gene Findings Blog Piece

Dems/GOP: Who’s Got The Brains

If you do a search on the Wired site, you’ll find many more….

Could it be that technology (and thus a technology pub) just lends itself to autism? Social recluses?  Intense focus and individuality?  Math wonks?  Hmmmmm…….  

Posted by Jerry in 12:19:20 | Permalink | Comments (2)

REI, Tanner and Amy – A Great Experience And A Great Bike

I usually post on Mondays, but tomorrow is looking to be a full day, and I might not be able to get a new one up on the blog, so I’m posting today instead.

First off, I want to give a shout out to Aunt Francine. Yesterday she finished her first half marathon. I couldn’t be prouder of her. Well done Francine. Better than your brother….but, being the big brother, I have to make the big brother ‘keep you in your place’ comment here (it is one of my roles in life). You still can’t shoot with your left foot. ‘Nuff said.

While she was huffing and puffing in Texas, Demetrius and I were buying his new bike (for his birthday). Over the past month, I’ve been out window, and ‘store-shopping’ the offerings and the service across North Fulton County. Typically, the experience went this way:

Jerry: Hi, I’m looking for a new bike for my eight-year-old son. Whatever bike we choose, it will need training wheels because he’s still not learned to ride two wheels, and he really has a hard time figuring out how to brake and not just put his feet down to stop when he’s riding. So I’m looking for, at most, a two-speeder. Oh, and he’s autistic, which will complicate this process a bit as communicating with him can be a bit tough. Can you help?

Typically, the result was, as you would expect: Ummming and ahhhing and fumbling through. One guy told me I’d have to pay in advance, for the bike, if he had to put training wheels on it – before we even took for a test ride. I asked about the return policy, and almost unanimously it was, sold ‘as is’ and all sales were final (because of the training wheels).

One guy at one store said he would be uncomfortable working with us, because he isn’t trained to work with special needs kids. I told him that I would be there to ‘interpret’ what would happen with Demetrius in the ‘test ride’ scenarios…he continued to push back… I asked (I’m sure I was showing agitation) how in the world would it be different from someone who doesn’t know how to ride a bike or what they possibly would be looking for? I would be there to help…he still wanted no part of it. He would just be ‘uncomfortable’. Okay, okay, and okay – I get it – you don’t want to be on the hook for helping a special needs kid with a difficult sale that may come back to haunt you… in terms of possible high maintance clients or a return … you want to work with tri-athletes. I get it.

I also get that this is just how it is, when Demetrius is your child. This is what I do, what Kim does, what all of you do. We interview and weed out the ‘not-so-goods’. Hoping to find an ‘okay’ or ‘pretty good’ experiene that we can, well, live with.

Which leads me to this REI store:

(Perimeter Mall/Atlanta)

And this story for this posting. This was an exceptional experience.

I’ve been a member of the REI Co-Op since we lived in Seattle. I’m no outdoors nut by any stretch – but man, the stuff that I need for my running in winter – I get from REI. From gloves to winter running socks – primo. Plus, I just like what the co-op stands for from a philosophy perspective.

So, I knew they’d have bikes there. Probably granola-y mountain bikes and the like, but I was having no luck at traditional bike stores (one guy, after a couple interchanges, just couldn’t get past the fact that Demetrius doesn’t need a 21 speed bike!) so why not stop at REI?

To my surprise (because I’m not a biker, so how would I know!?!), REI had a great selection of good bikes that weren’t for going up Mount Rainer at good prices. So from a selection point-of-view, I was happy, now from a service point of view….

Tanner: Hello, my name is Tanner, can help you with a kids bike?

Jerry: (I go through what I went through above in terms of ‘our needs’)

Tanner: Okay, is your son here?

Jerry: No, it’s just me at this time.

Tanner: Well, there is no point in looking at bikes until he looks at what he likes, and I can see how he rides the bikes after I put wheels on them, and I can see how much ‘life’ he has in the bike, ie, how many years he can ride on it.

Jerry: You’ll put wheels on it for him to test ride, before I buy the bike?

Tanner: Of course.


So Tanner gives me his work schedule, and Demetrius and I come in on Saturday. Tanner was working in the back, and they call him out. I introduce Demetrius to him. Tanner puts his hand out, shakes D’s hand and ASKS DEMETRIUS TO SHOW HIM BIKES THAT HE LIKES! I’m just window dressing at this point.

Unbelievably – Demetrius picks out the bike I thought he would like. Tanner asks him why he likes it.

Demetrius: The wheels have red, and flames. It is cool.

Tanner: Lets get you on it and see how you fit…

Tanner puts him on it, sees that Demetrius has some ‘life’ on the bike (probably about 3 years) and then does a few other tests. Talking to Demetrius directly the whole time.

Tanner: Great, let me put some training wheels on then we’ll take it for a test ride.

While Tanner puts some wheels on the bike Demetrius and I looked at kayaks and crawled in tents. Tanner reemerged with some serious, industrial strength training wheels on that bike. And he came out with a helmet that also had flames on it. Out we went to test the bike.

Demetrius did fine, a few adjustments would need to be made (height of the seat, leveling the training wheels)… and he fussed at Demetrius a bit for not paying attention to where he was going (Demetrius kept looking at himself while he rode the bike in the window of the store…you know, to see how he looked in the flaming helmet). After the test ride…

Tanner: Demetrius, I need to go take the bike to the safety doctor (run it through its final tests and adjustments). Would you like to come and see the workshop?

Demetrius: Yes!

Demetrius then reached up with his hand, and grabbed Tanner’s free hand and walked with him, hand-in-hand, back into the store (in the other hand poor Tanner dragged along the bike). I just kinda tagged along….you know, to pay. Laughing

Demetrius was psyched. I was floored at this guy and how well he was with my kid. My autistic kid. After the ‘weirdo’ experience the week before at the mall, I had some hope in the world.

Tanner eventually needed to make the adjustments (without Demetrius’ help, I think ;-) ) and a woman named Amy came out and introduced herself. We did some paperwork, and I said I needed to run off with Demetrius to look at the kayaks again as he was completely wired about the bike. Demetrius had the juice that all 8 year olds have getting new bikes, but none of th the abilities to restrain himself. I needed to run along so he didn’t get lost…and fill that paperwork out later.

Amy: Tell you what, you finish this paperwork and pay for the bike, I’ll give Demetrius a tour.

They held hands (again with the holding hands!) and went for a tour of the store, tents, and in the back in the bike shop. I waited by the door they went back in, and out the two of them came (Demetrius and Amy) with Demetrius pushing his new bike.

Jerry: Thank you.

I’m sure they thought I was saying thank you for helping me find the right bike, with the right equipment, for my son. And yes I was saying thank you for that….

But what they can’t know is that my thank you was also for the above and beyond – yea, that cheesy above and beyond you see in testimonial ads on TV and in magazines. The above and beyond that we don’t get often for Demetrius….the thank you for working on our terms, versus making me work around our terms to fit into your ‘neuro-typical’ stereotypical boxes to get what we need and want. That last sentence/statement may be a bit abstract, but anyone who has gone out in public with their autistic family members know exactly what I mean when I write that (I am thinking of a great posting Marla once put up about her daughter Maizie at a Mexican restaurant…and the fear of what reaction may come from an unexpected turn or event).

At REI, they went the extra mile to make this a great experience for him.. in not just getting a new bike, but picking out a new bike, and making him feel like a real special kid – not a special needs kid.

Thanks guys.

If you live by a REI Co-Op, and need some new socks to go for a nature walk in…well, go and overpay for a pair at REI. That slightly more expensive pair, which will wick away moisture from your skin to ensure you don’t blister, probably helps to make sure that Tanner and Amy can provide a better experience to Jerry and Demetrius…and also maybe to your family somewhere down the line.

Oh…and by the way…here is this great new bike:

Ignore the lawn mower behind it…pay attention to those silver and red flames on the wheel guards and seat cover!

Posted by Jerry in 02:54:35 | Permalink | Comments (17)

Friday, February 22, 2008

Maya’s Hannah Montana Wall

Well, first thing is first. While Demetrius headed off for school today, we kept Maya home for another (she had a slight fever last night we wanted her to beat) day. I knew she felt better when:

Maya set up breakfast for her little toy doggy ‘Coconut’ with its own bowl of water and apple slices next to Buddy’s bowl in the kitchen……

That said, while she languished in a slight fever stupor last night, I went down to the basement and put up her: HANNAH MONTANA FATHEAD!

Let me say this one was much easier to hang than Demetrius’ was.  First, we weren’t trying to hang it up over a window in a bedroom; second, because we decided to hang it in the play room in the basement, the walls didn’t have any sort of paint treatment on them – so it was a snap.  It is bigger than Demetrius’ Spider Man (which made Maya happy!) and came in two parts, but easier to get on the wall because of the vertical configuration (versus Spidy’s horizontial girth!).

So while we didn’t feel well at all, we still trudged it down to the basement to see it all hung up…which I think, released some of the endorphins last night that broke the Pink Bombshell’s fever.  Here are the moments this blog posting is all about:

We had to whip out our Hannah Montana guitar and jam with her, cuz you know, we are in the band together!

And we keep walking over and touching our Hannah Fathead while announcing, “It is bigger than Demetrius’!” This makes it all the more valued…

The complete Hannah Montana Fathead Wall, with Maya standing in front of it on a box I told her not to stand on…..

Guys, my kids love these. They ain’t cheap. But they are really well made and they are adored by each of my kids.  I wouldn’t hesitate to recommend one if you are considering it….my kids love them.

Posted by Jerry in 19:19:31 | Permalink | Comments (6)

Thursday, February 21, 2008 Autism Blog

Hey guys: Just wanted to point this out to anyone who may not know about it. Talking about the CBS apology on the blog toda…..
Posted by Jerry in 18:20:57 | Permalink | Comments Off