Monday, July 31, 2006

Ankle better, but…

Well, as I said yesterday, my hope was the sprain wouldn’t be so bad that I might be able to begin training again rather soon.  I don’t think that’s going to be the case.

While I can walk on it, I pretty much can’t do anything else. I will have to say that it feels good enough to hobble into the gym and then it feels much better after I sit in the hot tub, but I don’t think a race in two weeks is going to happen.  Let alone driving in to Midtown to go to work….so I am working from home, with the dog…for the next couple of days.

The fam will be heading back in the next couple of days, which is a good thing as I miss them greatly.  Unfortunately I won’t be able to chase them around as I would like, but the hugs will be greatly appreciated.

I don’t have much to write about today.  A lot to do with work, and just icing the ankle.

Posted by Jerry in 17:14:14 | Permalink | Comments (2)

Sunday, July 30, 2006

Gifts From Kansas And Sprained Ankles

When I went to get the mail today, there was a surprise….a letter from Kansas! And in the letter were these two drawings from Maya. Love them! Of course, for those of you who have been to my office, you’ll know that they are going to go up on the wall on Monday. Of course, this also means that I just miss the kids even more than before I received it.

But what a pick me up for what has turned out to be a pretty dark day. Again, as many of you know, I have lost a beaucoup of weight this year and am training towards a goal of running the NY Marathon in the next couple of years. Physically, I have not felt this good since probably my early college years. See, I had a reconstructive ankle surgery about 5 years ago, and I have slowly gotten myself back into shape. 5 lbs. here, stronger legs there, etc…and etc…well, I am even running sprints these days.

This morning, during a very long hill run (with Buddy of course), I twisted my ankle. Now, when I twist an ankle, its usually pretty bad. I have chronically weak ankles and they’ve both been surgically repaired. I fell on Buddy and we rolled around for a minute. He licked me as I laid there feeling my body out to be sure I was okay (we fell as we were running on a trail, so I wanted to make sure nothing was really hurt – I knew I twisted the ankle). I stepped on a protruding tree root I didn’t see.

I was far enough along that I was able to finish the run with a bit of a limp, but I was biting my bottom lip. I have three races (two 5ks and a 4 miler) in the next 45 days, so my fear is that I can’t do them before I start doing 10ks. I immediately began the RICE therapy (Rest, Ice, Compression, Elevation). In fact, I have ice on it as I type and I’ve been keeping it up all morning. Further, I’ve bought a couple of different ankle braces for compression and have been taking the anti-inflammatories to keep the swelling down. I have to say, it feels pretty good schlepping around the house, but we’ll see when I take Buddy for a walk in the next few hours.

I have a ton of yard work to do tomorrow, I have to walk the dog, and have nobody here to help out, so I can only rest it for so long. And I’ve told some friends I will help them move furniture…so I have that to do also. We’ll see how we shake out on Monday.

It’s my right ankle, which was the one repaired a few years back, so I can’t tell if it is really sprained that bad, or if the pain is scar tissue, etc..that’s never been stretched. Again, I’ll know come Monday. Even if it is badly sprained I still have to walk Buddy, so I’ll know soon enough – but I’ve been in a cycle class that kicks my proverbial butt, so I’ll just do that instead to keep my training up…but today, man, I’m just disappointed. So, as timing would have it, I got the drawings in the mail from Maya today. That’s the one good thing on a bad day..isn’t it?

Posted by Jerry in 02:06:47 | Permalink | Comments Off

Friday, July 28, 2006

Stemming and Late Night Phone Calls

Kim was telling me last night that she’s had a bit of an issue at the Grandparents house with Demetrius due to the fact that they still have a VCR and some tapes.  Seems that he keeps sneaking back to the TV/VCR combo and starts stemming on pushing the buttons on the machine.  Old habits come back quickly…he starts squealing, jumping in place and flapping the arms.  He then hits the button and repeats and rinses, so to speak.

For those of you that don’t know, autistic stemming is repetitive actions or movements, like rocking, spinning (themselves or objects), waving fingers in front of eyes, sounds (humming, droning, repetitive babbling) made to help soothe or cover other sounds, etc.

The one thing definition leaves out is that it seems to be, in our case, addictive.  Once Demetrius starts stemming, especially on the VCR player, it is all he wants to do.  Kim was telling me that he literally gets out of bed in the morning and goes into the spare bedroom and starts to stem (if a tape had been left laying out for him to plug into the machine).  His focus is solely on this, and breaking him away from it, and kind of shaking him out of the stupor, is hard.

I think this takes care of itself in the next couple of years….sure, hopefully we can help him grow out of it, but also, VCRs are obsolete, pretty sure he won’t be able to find one to stem off of!

The issue with the stemming is that we lose him for a period of time, by doing this — the autistic kids leave our world and retreat back into their own, for the most part.  And they are sneaky about it too.  I’ve seen kids stem off stroking a pencil in class, or touching a formica table top and skimming the palm of their hand over the top of it.  You kind of have to be ever vigilant about watching for it.

For the most part, Demetrius’ stem points are visually brought on…it isn’t so much tactile for him (as far as I can tell).  He will stem from doing this with the VCR, or sometimes on the computer if he has mastered a game.  If it queues him the right way, he’ll stem off it.  One thing is that most of the games he’s interested in require interaction and achieving an objective, so if he doesn’t catch all the jellyfish in his SpongeBob game, then it stops and he goes back to some pre-defined spot.  Hard to stem when you don’t have control of making it repeat to get the rush off of, so to speak. 

Stemming is always a bit scary to me.  Especially if he starts to do it in public…its weird, and quite frankly, loud.  The squealing and then the trying to get him out of it can be an attention grabber, no doubt.  Further, it is kind of the ugly exclamation point that, well, look, he’s autistic.  I kind of look at like the same way as epilepsy.  Sure, you seem normal until the seizure comes on….then if you have one in front of other folks, it is scary. 

Last thing today.  To the lady who figured out my phone number and called me at home last night.  Don’t do that again.  I don’t care if you think my blog is a fraud about autism…I’ve been more than honest that there are better sites out there to discuss issues, therapies, etc..this blog is about a family dealing with it, laughing about it, and just going on trying to be the best family it can be.  I don’t care if you think it is a fraud. I do care that you called me and cussed me out at home.  I will say this, if you do go and ‘call me out’ on other blogs…thank you. You’ll probably increase my readership.

Posted by Jerry in 15:39:42 | Permalink | Comments (11)

Thursday, July 27, 2006

A Long Distance Cry

Everyone is in Kansas safe and sound, but apparently all is not well in the Land of Oz.

Demetrius sometimes wigs out when he gets out of his environment… and its no fault of anyone’s, he just becomes unbalanced.  Maybe its sleeping in another bed, or its just being excited to go into his cousin Nathan’s room and see all of those GI Joe’s out to play with.  Who knows. 

Last night I spoke with him briefly on the phone and he started to tell me about his day (swim lessons, watching TV with Poppy, etc…) and he just started bawling on the phone.  “Daddy, you need to come here, I need to see you, you need to drive the car home.  You need to take me to Burger King.”  He got himself so worked up that at one point I couldn’t understand him.  Kim came in and tried to talk him from the edge, but he was just too tired and over stimulated.  The kicker, I could, hear him in the background saying, “I need a squeeze-y hug from Daddy….”

We hung up at that point, but I kind of ached inside.  First off, as always, I enjoy my alone time, but the lack of the kiddos noise and activity leaves a big old empty space in the house.  I might be watching what I want on TV and eating what I want for dinner, but that empty space is the white elephant in the room.  Second, the squeeze-y he wants is a certain hug where I put my arms around his body from behind, squeeze his arms to his sides, press him tight to me and then lift him up and swing him side to side.  With his issues, we cover a lot of sensory input needs with this hug.  It works for him from me, and I think there is also just the security that comes from a typical hug in it also.  It has always settled him down, or brought him down a level (though it is no magic bullet) but doing this a few times can get him to calm down.  I have no idea if we can keep doing this as he grows taller and gains weight, but it works.

He also called me his best friend (this might pull at your heart strings, but his best friend is dependent on what his wants and needs are at that particular time).  Kim probably had a hard time getting him down for bed, because most likely, Maya has decided to help out also, which might help if he is receptive to both of them.  Sometimes he gets a bit pissed to have Mommy’s little helper there barking orders.  Not that he is violent or anything, but he just doesn’t calm down.

So I hung up and sat there and petted Buddy and cooed the dog a bit…and stared right at that White Elephant across the room. Of course, as it would be the case, I could see a Batman between the cushions of a chair…I suppose one that was planned to make a trip to Kansas but just happened to be misplaced. 

Batman sat on the table next to me while we watched a bit of television.  I held it tight as I put it in the toy box when I went to bed.

Posted by Jerry in 13:45:11 | Permalink | Comments Off

Wednesday, July 26, 2006

Buddy The Dog Channels A Beaver

The wife and kiddos are at Grandma and Grandpa’s right now in Kansas.  Being spoiled I’m sure from all the love, attention, sugar and toys.  This means I have some time to myself, but this year its been a bit different than before because now we have the dog, Buddy.  Which means I can’t just go to the movies after work and slide into the house and hit the hay.  Buddy needs a walk, he wants to play ball, he needs some tender loving care.

Last night, he chewed through some furniture (a dresser) that got him into some trouble.  When we got up to go jogging in the morning, he hid in the closet, other rooms, etc..while I got ready (he didn’t want to get yelled at any more than he did) but as soon as I put the running shoes on – pow! He shot right for the door and started wagging that tail.  It makes me wonder what goes through his mind, like, “trouble, what trouble? I’m going for a run!”

I think it should be expected that something would happen when Kim and the kids were gone, but I just didn’t think it would be the expensive furniture that he’d nibble on.  I of course threatened him, but I think he knows I’m full of hot air.  The good thing is one of the side panels on our bed is broke, so I can hire a furniture repairman to fix both at the same time.  Hopefully, I can get this done before Kim and the kids get home. Well, we’ll see.

Next year, he goes with them to Kansas!

Posted by Jerry in 21:23:25 | Permalink | Comments Off

Tuesday, July 25, 2006

Stories and Paul Giamatti

Every parent reading this statement can chuckle – ‘seen any good movies lately?’! Kim and I saw just about everything there was to see before the wee-ones. I can remember in 1999 seeing a few gems, and then Kim being about to burst with Demetrius and wondering what the hell Magnolia was actually about.

Well, as I have written before, now we are excited about the comings of movies like Monster House and Superman Returns.

Along the way we miss movies that make a difference. I try to catch a ton at once on the big screen when the kids and Kim head back to Kansas for a few weeks each summer, but really, that’s just about what’s out at that time.

That being said, I did manage to recently grab Sideways from the Blockbuster down the street. Most of you are saying, been there/done that. But if you enjoyed it – I think, it is probably one of those that you can rent or buy and watch again, and like it for what you saw before or what you might see that you missed the first time around. Frankly, I don’t know why I just don’t see everything that Paul Giamatti’s in. I liked him ever since I saw Man in the Moon, and he just doesn’t let up at all does he. Good roles and maybe the best supporting actor around these days.

Picks good roles in good stories (this makes me want to go rent Cinderella Man). I respect that. Tom Hanks had a run like that in the 90s. I hope Giamatti gets his awards and continues on the hot streak. The only problem I have with Sideways is it brings out another point back to our non-kids days. We got into the whole wine thing while in Seattle. Kim still likes to drink a glass, but I’ve given up alcohol completely. While I’ve never been more than a glass or two a night kind of guy, I just feel better when I don’t drink. Its not a drunk thing either…I just jog better at 4:30am if I don’t drink. Of course, I also gave up coffee last year, so maybe I’m just going Mormon and haven’t realized it.

I digress. While this character goes over a bit with the wine in the movie, I always liked how those that really were into it didn’t really drink to get drunk. There was more a treble of passion there. (Again, to my Seattle postings – those folks had the trifecta in sophisticated palates: coffee culture, wine and micro-brewed beer!) Serious passion. And with over 200 bottles at one point in our cellar, I shared that passion!

I wouldn’t go back though. I wouldn’t trade a bottle of the best David Bruce, Petit Syrah for sharing lunch with Maya at Chik-Fil-A.

I’m rambling today. Anyway, back to the point. Sideways is a good movie because it is a good story with good acting. I’m a bit frustrated with my story. I’ve penned a book entitled “Christmas In His Bones” and I’ve shopped it around. But as far as I can tell I’ve submitted it to about 100 publishing houses and only THREE have read it (I don’t mind being turned down because it doesn’t fit with their publishing needs, or they just don’t like it. Most are not accepting manuscripts from unknown writers. This makes me go, “huh?” I mean, how do they get new material? Maybe they aren’t interested, or I’m not finding the firms that want new material?)

At last count over 50 people have read this story, and I’ve asked for critical feedback from writers, friends and others interested. Most of the mothers seem to love it. The dads say that it teaches a good lesson about dealing with special needs siblings. The writers can’t understand why I’m getting unread rejection letters and I’ve gotten some tears from it from folks I’m not related to. ☺ I’ve even had a few people use words like wonderful and beautiful to describe it.

Maybe they are just stroking me and I should pull my head out and realize this by the denial form letters I’m getting in the mail. OR…

Maybe, I should post it on my blog and see where this new media thing takes it? At worst, if I see it published I have the paper trail to sue anyone for all the profits (that’s a warning folks)…at best maybe someone knows a publisher or agent, AND I can get some more feedback on the story. What thinks you guys, the folks that read this blog? Let me know your thoughts….please, everyone who reads, let me know if you think this is a good or bad idea.

Posted by Jerry in 16:16:09 | Permalink | Comments (4)

Monday, July 24, 2006

Other Blogs

Believe it or not, I’m not the only autism related blog site out here in cyber-space! ☺

I know, I know – surprising to you and me. However, there are a lot of good ones (and unfortunately, bad ones) that offer different points-of-view and cover the issues differently. Some are more clinical and medical, some are more adversarial, and some will just plain educate ya on the facts a lot more than I ever will. Here are a few I like. I’ve also added them to the blogroll on the right, if you decide to peruse them at a later date.

http://alongthespectrum.com/

I just think this is a thorough and well-written blog on autism and life ‘along the spectrum’. The voice of this blog is familiar to mine, so if you like the one you are reading right now, you’ll most likely find this one appealing also. It is a bit less family focused, but still life and lifestyle oriented, in my opinion.

http://autismdiva.blogspot.com/

I like the autism diva. She brings an attitude to her writing. Let’s be clear – she has opinions. But she is very focused on her blog about writing about the autism issues of the day. I don’t mean this as a slam at all, but I read her like I watch Fox Cable News – it is opinionated and passionate. I think we (the autism community) are better for having her raise her voice in this blog, whether you agree with her or not on some of the subject matter.

http://autismsedges.blogspot.com/

This absolutely the closest blog I’ve found to mine. If you like reading about the worries, the concerns, the emotional roller coasters, and the search for peace and happiness in the world of special needs parenting…then this IS THE blog for you.

I also get the feeling that much of this blog is written in the middle of the night, when sleeping is the preferred option but blogging is the acceptable alternative.

http://www.neurodiversity.com/

I like this one because it is a cornucopia of knowledge and resources. The writer/aggregator here is a librarian by training, so her skills of compiling and organizing are tres magnifique in terms of autism sites and blogs. If you want to do a little of research, this is the place to begin and end at. She also has a very good biography of who and why she’s doing what she’s doing.

Posted by Jerry in 13:24:34 | Permalink | Comments (2)

Saturday, July 22, 2006

Taking Things For Granted

We are all accused of taking things for granted in our lives.  So many that I can’t even count.  My luck of getting into technology PR in the 90s and getting to work with some interesting and successful clients (instead, of course, I focus on the projects my teams recommended that they didn’t do, or if they were being difficult)…doting parents…the opportunities to try and explore things in my life, like moving all over the USA, going to an out-of-state college, all of these types of things.

But the one I should be paying more closely to is Demetrius’ progress.

I see the boy everyday, and while I can tell you that his speech, attention, communication skills have all gotten better, I just don’t see the leaps and bounds he is making as others do.  It takes a relative or friend we haven’t seen in months to realize this.  The proverbial anvil hits me on the head then.

One of the not fun things of parenting is the ‘doing of homework’.  This has nothing to do with autism, this is just plain ol’ parenting 101 work. The kids who want to, and like to, do their home are few and far between.  Most of the time we’ve got to get on their backs and ride them to do it, and then hope it takes and they see the benefits, and develop the discipline, to do it themselves.  Obviously, the pain points for EVERYONE are high here, but I suspect we’ve got a bit of a ‘dash of Tabasco’ more with Demetrius being autistic in this particular battle.

The ADHD medicine he takes has made his concentration much better, and as I have written before, his schoolwork improved immediately.  Unfortunately, it wears off rather quickly, so by the time we help him with his homework he is less than ideally motivated and medicated, so we don’t see the benefits – we obviously take it for granted and know that the teachers are seeing it.

All of this leads to a statement I received from someone yesterday.  It was along the lines of “My God, has he made progress, is he better.” 

“When he goes outside to play, he doesn’t just run off and he actually interacts with other kids.  And when his Mom makes him sit down, he does the work – and he tries to do it.”

Of course I love hearing this, but here’s the best part.  It is July 21st, the middle of summer.  He’s out of school and out of the routine that comes with it.  And this statement was made.  The smile I had yesterday was due to this realization.  Of course, again, this has very little to do with me and everything to do with Kim.  She keeps him working hard, whether he likes it or not, and does everything she can to make sure he’s on a routine – whether he likes it or not.

So the anvil hitting me over the head (I feel like Wylie Coyote here) is thus two-fold. 

First, I should smell the roses a bit more when it comes to watching Demetrius and helping him out.  The comments are right – he has made great progress this past year and I am thankful.

Second, how lucky are we to have a Mommy/Wife like Kim?  Maybe sometimes she pushes too hard, but she’ll never be accused of not pulling more of the load for this kid.  He won’t fall back on her watch.  Everything is a little harder with Demetrius, which means she’s got to work a little more, and I don’t remember hearing her complain about this.  I’m sure there are some other things during the summer they all would rather be doing, but if they did that, versus work on writing or reading…would friends and family comment about the progress he is making in the middle of the freaking summer?  I don’t know, but with Kim, I know we’ll never have to find out.

Posted by Jerry in 15:29:19 | Permalink | Comments Off

Friday, July 21, 2006

Superman PJs and Nakedness

I am amused with my son today.  Kim and I were chatting on the phone yesterday when I heard Demetrius babbling in the background about his Superman PJs.  Here’s my version of the conversation (about 3pm, ET):

“Mommy, where are my Superman PJs?”

“Demetrius, why are you buck naked in the hallway?”

“I want to wear my Superman PJs”

“No, put on your swimsuit, we are going to the pool in a little bit.”

“Pool, okay…..then can I put on my Superman PJs?”

“Just put on your swimsuit Demetrius, and quit playing with yourself.  If you do that you need to go into your room so Maya and Mommy don’t have to see it (This is good advice from our friend Elaine.  The thought of course is that the threat of being banished to his room would be enough to get the boy to quit playing with himself.  It works, as far as I can tell, about 20-30% of the time.  The remaining percentage, I think, he thinks, ‘I’ll go to my room, play with myself, and Mommy and Maya will leave me alone – this is winning proposition!’”

“Close the door while you get dressed.”

Again, the comedy of what is constantly going on is just great.  Where was Maya might you ask?  Printing off Web Site pages to color. We don’t know if she had permission to do that….

Nor do I know what Web site she was on, either.  I already had a naked boy wanting to wear his PJs in the middle of the day….

Posted by Jerry in 13:27:10 | Permalink | Comments (1) »

Thursday, July 20, 2006

NPR, Chris Holland and Insurance Pain

NPR has aired a couple of stories on Autism over the past couple of days. One being a look at the brain of a 29 year-old-brain versus that of a normal 29 year-old. First, important here, these were cadavers. When they sliced them they found they developed differently and had less neurons than regular brains in certain regions.

To get it right, read the piece here.

Some of you have come to this blog from my colleague Chris Holland’s blog. Well, if you have and you didn’t know it, he’s gotten engaged. Click here to go to his blog and give him congrats.

Sometimes I get frustrated dealing with the insurance company and all that surrounds it. Due to an internal ‘tag’, which mistakenly stated that we had a ‘limit’ on the amount paid annually for Demetrius’ speech therapy, the nice collections folks at Children’s Hospital of Atlanta called me and let me know we had thousands of bucks past due, and if we didn’t pay it, then Demetrius’ therapy sessions were at risk.

Long and short of it – all is apparently worked out. And Children’s was appalled that someone would say that to me. So to their credit, they are back on my good side and investigating why that would have been said to a long standing client that does ALL their therapy for their kid there. But it took me about an hour to work out on the phone, and I had to pull a bunch of bills and documentation to go over with the insurance company and then the hospital (along with pre-notification numbers, etc…). I don’t understand why the burden is placed on us each year to sign up for the right plans, get all the appropriate pre-notifications and all, and then still – they screw something up…for us, it seems about once a quarter – they scare the be-jesus out of us and then they seem to make billing mistakes alot…that give me grief and heartburn.

It always gets worked out, but if I had all the hours back ‘undoing’ the mistakes, I would have at least two days back on my life. God knows how many hours Kim has dealt with this. The disability is hard enough, but the insurance aspect is just the icing on the top.

Sorry, a bit of venting in today’s post. But many of you are living this also….

Posted by Jerry in 20:18:38 | Permalink | Comments Off