Thursday, March 12, 2009

California Autism News

Maddy: You are my California guru, what says you about this news?

Are we happy about what therapies were approved, or are we more disappointed about what wasn’t approved?

Posted by Jerry in 01:49:29 | Permalink | Comments (4)

Thursday, June 26, 2008

Really Interesting Discussion On

I read this on the Trib’s blog yesterday, and saw the posting today. Yes, I think all the points made are totally relevant, but I don’t have the whole story, from at least what I’ve been able to find (if you have more, let me know)…

If we want to throw blame around (what’s the point)… don’t we have to put some of it on the parent traveling with the boy?

It is incumbent on all of us to at least be aware of the threshhold of our own children, and their ability to react and handle situations.  I am not judging at all here, but it seems to be that this might have been a subject that should have been vetted before it escalated.

God and everyone that knows me knows that I don’t do everything right in regards to managing Super D, but when we do travel with the kids (and we do a fair amount of flying) I almost always tell authority figures throughout the process that D is special needs.  Look, I promise you this, that if the boy was downs syndrome, with all the facial features so evident, that this flight attendant, most likely, would have approached the situation differently. As I’ve written repeatedly, our children don’t have those markers for others – we have to help them along the way…and it seems to be that this is exactly what is needed in this situation. 

Ms. Rudy hits on this, but there is some culpability here on the parents to make sure the calming toys/lovies are reachable (as stated) and that the parties that need to know, know that the child has disabilities/special needs. If that was conveyed up front to American Airlines, shame on them…but if not, we need to think about these types of things before we travel (Maddie does a great job writing about these things on her blog with her boys. So does Marla with Maize.)

What thinks you?

Posted by Jerry in 17:57:39 | Permalink | Comments (4)

Sunday, January 27, 2008

A Few Things, One Of Which Was As Ugly As I’ve Seen

First, thanks to Maddie over at Whitterer On Autism for the Mwah! Award. She’s long been one of the best ‘autistic parent’ bloggers on the Web. Her turn of phrase is outstanding… and she doesn’t give herself nearly enough credit for her ability to blog. She’s great. If you haven’t read her stuff, you need to click here.

Second, she passed me this hyperlink about this special little boy right here in Georgia. Great little news story.

Third, I saw one of those fears I have about my special needs child realized yesterday.

I’ve blogged before about my fears of neuro-typicals who don’t understand what our/these kids, families, etc…are up against. Most, if not all we’ve met to date, have been understanding and accepting at certain levels. That said, as far as I know (or Kim and the teachers have told me) we’ve not just run across an aggressive or mean kid that bucks this lucky trend for us.

Yesterday, I took the kids to a new ‘high-end’ McDonalds that recently opened by us to eat and play in the play area (this is a really, really nice store, I tell you). The kids were eating, among many others, watching the TV with Cartoon Network on it, and playing in the play area. I wasn’t particularly paying attention to this one little girl, or boy (I’d say, 6-7 yr. olds). But I was once I heard the blood curtling scream, and saw the blood.

The boy was standing over the girl, he had a look of ‘I’m in trouble’ on his face. Here’s the quick and the dirty: apparently they were tussling over a Happy Meal toy. They didn’t know each other. So, he reached up, grabbed the implanted hearing aid on her ear/head, and pulled. Pulled her down the ground. And pulled it out.

Now, these things have to be built to have a release mechanism if situations such of this occur accidentally or on purpose. So I’m sure this happened. But she also landed on that part of her head. And she had open wounds in two areas…right around the implant, and she also cut her head higher.

Everyone reacted as you expect them to. The manager wouldn’t let the dad and boy at fault leave until the police showed up, everyone helping the girl, and a few moms giving the boy an absolute tounge lashing. His Dad just made a few calls and sat down…I’m sure completely embarrassed and petrified.

Paramedics show, the girl freaks out. She’s screaming because she has seen her hearing aid out of her head, and she’s seen a ton of blood. She’s asking her Mom, who is holding ice against her head (and her daughter as absolutely close to her as possible as only a Mom can do) and she’s asking if, “she’s going to die?”. Of course the Mom is literally screaming at her, “LOOK AT ME! NO YOU ARE NOT!” But it really didn’t do any good, the girl was scared to death, and of course, she couldn’t hear (apparently, there must be issues with her other ear, or the device was broken, etc…).

About five paramedics stitch up her head immediately (from the non implant cut, and by the way, kudos to the McDonalds folks, they closed off an area of the store just for this poor girl) and then cut the hair around the implant…because, as you can guess, they were taking her to the hospital for immediate surgery on it.

Maya was a bit freaked out (lots of kids asking questions ‘why’, ‘how come’, etc…) and we parents huddled around and tried to figure it out. (Dad showed up, collected the things, said thanks, and was off then to follow the Mom/girl to the hospital).

Demetrius, well, sadly…or luckily….being in his own bubble is at play here in this situation. He didn’t really care to pay attention – because Tom and Jerry was on the TV and he had chicken nuggets and french fries. So he just kind of looked over a couple of times, and went back to eating and watching TV.

The aggressive boy? Well dad and boy went off in a police car. Don’t know where, or what happened (I spoke to my dad briefly, his thought was that most likely they took them to just scare the boy and get him ‘booked’ for some counseling of some sort, I’m sure…not to mention in case lawsuits ensure, etc….makes sense to me).

So here is what we garnered from another Mom kind of watching when it all happened. The boy left his lunch toy on a particular table as he took his shoes off to go play. The girl picked it up. He wanted it back. She ignored him. He pulled her down from her chair by her hearing aide and took the toy. We all basically agreed – with all the background noise in an indoor play area, and her disability, she probably didn’t hear him ask for his toy back. Then child’s aggressive action ensued.

Needless to say, not one of you needs me to expound on what I fear might happen to Demetrius (or your child) in a similar situation. In fact, Demetrius, I fear, is in an even more tenuous situation because he doesn’t have any sort of implant, or brace…he just would be a kid ignoring another kid….no markers of any sort to say that something is ‘different’ about him. If this boy would do this to her without thinking it through, as is typical of children this age…. well, you know what I was thinking.

During this :15-:20 period, parents came and went (those not as close to the action as I was with some other parents & kids)…but they all got caught up on the trauma pretty quickly…but one Mom who came in and was listening to the story intently asked the obvious Mom question as how it would relate to her two kids in the play area: “There isn’t any blood in the climbing area or on the slide, is there?” We answered no, and she wanted to know where it had ‘been’…by the tables, not the play area, which had long been cleaned up by the McDonalds staff. Second follow up question by this Mom: “Did they use cleaner to wipe up the blood off the floor, or just water?” Because, you know, her kids would be running around without shoes.

Moms just think different than dads, no doubt. Am I wrong to want to tell her to take a ‘chill pill’ in this moment? Probably.

So, about :15 later we leave (I wanted the kids to play a bit after that) and of course, as luck has it, the new mini-van won’t start. Starter broke. Maya breaks out in tears, “Daddy, I’m scared! I want Mommy.” Mommy comes, gets the kids…and I go off with the AAA tow truck to the dealership to have the starter, and a few other things fixed (they are all under warranty, thank goodness).

I wonder if those hearing aides are too?

What a couple of hours.

And something that certainly makes me worry, just a bit, more about the boy and other special needs kids. As if I didn’t really worry enough about this kind of stuff now….to see it happen in front of you with another, only ‘wakes you up’ to these very ugly, but very real, potentail situations.

Posted by Jerry in 16:27:43 | Permalink | Comments (2)

Tuesday, October 23, 2007

Car Kids

My friend Maddy often writes about her two boys and how they have such a hard time with transitions and riding in their vehicle. I feel for her when she blogs about their family’s trials and tribulations going to Target or the grocery store.

In contrast, my kids LOVE going places. For Demetrius, there is always the opportunity to play with toys, watch a DVD, or get a snack. The benefits for him far outweigh the downsides. Maya’s just a car girl. At some point in her life she’s going to play a role in a high school musical of Grease. She just loves cars. I also worry that she’ll go ga-ga over some doofus in high school that can only drool his name and takes shop, but drives a Bitchin’ Camaro and has an idea about my daughter and that vehicle with too much room without an uncomfortable hump in the backseat of that gas guzzler. Let me take that back, I’m channeling the 1980s – a cool hybrid muscle car, circa 2015.

I, however, drive a 99 VW Jetta. I love my 99 Jetta. Its got over 100k on it, a big scratch in the passenger side door (starting to rust) and its paid for. PAID FOR. My favorite kind of car. Yea, I’ve had to throw some coin into it this year, but it is PAID FOR. Let me just say, Maya is not impressed. She sees a Lexus SUV and makes an appropriate comparison in her head. How she can even ride with me anywhere, I don’t know. She’d rather be in that monstrosity, and I would too, if it were a paid for 99 Jetta. Poor girl.

Anyway, my car was in the shop, and I got a rental from the shop (they didn’t fix it right the first time….), a real boy toy type of car. A Dodge Avenger. When I drove up to D’s soccer practice in, the kids yelled, “LOOK AT DADDY’S NEW CAR!” When I told them it was just a rental, for one night, they heard and saw only what they wanted, “DADDY’S GOT A NEW CAR.” So we went to get ice cream after practice, every one in the place heard about my new car. They both traded seats in the back to get the different perspective from this ‘BIG GRAY CAR.’ At one point Maya put her legs up on the seat and pointed out she could put here legs across the car! Then she told Demetrius to stop touching her (I had to remind her that she had her legs on him, that technically, she was touching him). No matter, she was in the throes of new car love.

Later that night, we worried we couldn’t find the wee ones and we heard something the garage, they both were sitting in the backseat of the car, reveling in its new car ‘newness’.

This morning, we had to sit in it on the way to the bus stop. As we walked, post reveling, I held Maya’s hand.

Maya: Daddy, are you really getting your Jed-DA back today?

Daddy: Yes, and I have to take the gray car back.

Maya goes quiet. Looks at me.

Maya: Well, at least I’ll have fun riding on the bus, still.


She’s learning folks. She’s gonna make a great wife someday, ain’t she? I’ve got guilt that my car needs an upgrade for my 5 year old. I’m a sucker.

Posted by Jerry in 19:16:40 | Permalink | Comments (6)

Tuesday, June 5, 2007

Story Sound Familiar?

Autism on the rise in Australia…according to this piece….and horrible therapy options? Surprise, Surprise….

Though, I think, Mcewen needs to move to Australia so her boys can get therapy at the Lizard Autistic Centre.

Posted by Jerry in 19:36:30 | Permalink | Comments (1) »

Friday, May 11, 2007

Thinking Blogger Award II

Well, I won a second Thinking Blogger Award thanks to Random Yak. I think when that happens, it officially qualifies as viral.

So if you remember, these are the rules:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think;

2. Link to this post so that people can easily find the exact origin of the meme.

3. Proudly display the ‘Thinking Blogger Award.’


Here are they are:

A former colleague of mine is going around the world with his family. He’s keeping a fantastic blog about the travels, and the whole family is blogging.

A mommy writing about being a bit older than the ‘typical’ mom. A pleasant and heart warming read.

If you read this blog, you are often pointed to McEwen’s musings. She deserves a thinking blogger award.

I love this blog. This is a brave young man.

Twins with autism. Worth reading about.





Posted by Jerry in 05:21:01 | Permalink | Comments Off

Wednesday, April 18, 2007

Thinking Blogger Award

Hey lookie ya’ll, I won a thinking blogger award:

Cool huh? Well, this is one of those meme thingy-bobs, so here are the rules of the game.

So what I’m supposed to do is nominate five other blogs that make me think, and call them out….hmmmm….

Okay, so here are five I like these days (they might change tomorrow):

  • I once hired Guy to run an evangelism workshop at Sprint and also moderate a panel we called ‘conversations in technology’. He’s maybe the most energetic bloke I’ve ever met in life. Super nice guy too…you’ll find him all over the Internet, but you’ll find his very interesting blog here.
  • My friend Dave has some cool personal blogs. Here’s one I peruse on a regular basis. Hit the archives and read his-back-and-forth with a fellow blogger about whether a bake shop should/shouldn’t have let him take digital photos about their tasty treats.
  • I’m a PR guy through and through, and Tim’s been around the block – seen it all, done it all. I only wish he posted more often, but he’s off working for clients, ensuring their blogs get read, I suppose.
  • As many of you who read me, and know me…I’ve gotten into running…I should probably start another blog called ‘fat guy running’ or something like that, but until then…I’m reading this one that kind of brings together my passion for running (I’m so glad to have this in my life again) and my passion for Demetrius and his condition. Is this a big thinking blog? Well, for me it is, it makes me think that in a few years we’ll be able to try this with Demetrius, how would we do it, etc…it gets me excited and thinking of a way that we can channel that boy’s ADHD energy! Might allow me to go to bed on Saturdays and Sundays a bit less tired too. :-) Thanks to Maddie Mcewen for turning me onto it!
  • Finally, this is like the Simpsons/Far Side/Family Guy all kind of rolled into one. You are either going to a) get or not get these cartoons…or b) laugh or be turned off by them. Uncle Jimmy turned me onto The Perry Bible Fellowship a few months ago, and I eagerly await each new strip when it appears.

There you go, my five blogs. Happy reading.



Posted by Jerry in 13:45:26 | Permalink | Comments (2)

Tuesday, April 10, 2007

Elevators and IEPs

I got off some elevators the other day on the 7th floor of our office building (top floor) and there were some guys working on the elevator car across from the one I was exiting.

I noticed that they weren’t working on cables, rather, they were working on the floor of the elevator itself. This perplexed me. So I asked…was it something that had to be worked on the top floor? No they answered. I asked, then, why would they work on something on the top floor with the risk of something going wrong, and possibly dropping to bottom?

I got an irritated response that this ‘almost never happens.’ Almost being the key word.

This makes no sense to me. If I were in that business, and I was working on anything with risk of dropping, I’d do it on the bottom floor so I eliminated said risk. Unless obviously it was in regards to working on pulling the car up or down or stopping on a certain floor, etc….

Anyway….just an observation. ‘Almost never happens’….people almost never get struck by lightning, doesn’t mean I’m gonna walk around outside during a thunderstorm with a metal pole.


Ms. Amy (Amy IEP I’m going to call her) was over working on the IEP last night. Looks good. Kim got some excellent counsel from the Monarch team I blogged about yesterday to take the majority of the education elements out of it, that they will be addressed separately and focus on the social, behavioral and disabilities elements of it – like sensory and speech. In his troubled education elements, include those, but the focus of this year’s IEP has moved away from being more like a report card on academic progress and more focused on achieving integration and adaptability to the kids and the classroom. (Amy IEP, did I get that right?)

Further, one lesson I have learned is that these IEPs are just a waste of paper if you are writing them for a roadmap for a whole school year. If you look at Demetrius from point A-to-point Z, big progress. A-to-B? Maybe less so.

The IEP should be written in a way that we are still going to see that A-to-Z progress, but ensures we can amend/change/adapt A-to-B when and where needed. Therefore, why get too far ahead of ourselves?

I see in this kindergarten IEP quarters/grading periods where he has ‘5/5’ and mastered a task….three months later regress a bit? Why? Well, might be that a special needs kid can’t put it all together at the same time and build the same way you and I do upon our skill set. So if at the end of the year he is there….do we really need to worry about something that is 4/5 9-out-of-10 times when we could be focusing on something else? These things have to change with the boy’s changing needs. Mallable, flexible and adaptable.

Whitterer on Autism
has a great posting on this thinking…I like the corkscrew analogy a lot.

So that’s where we are….next steps are to finalize, and gulp, have another meeting on it before we head off to school for the actual meeting. I think we are almost there….

Posted by Jerry in 16:36:45 | Permalink | Comments (2)