Tuesday, February 17, 2009

Raeann's Little Journey

I’ve always intended on writing more on this blog about my daughter, Raeann, and our family’s experience of her autism. I think this would be a good time to start.

For 3 years now Raeann has been a member of the Frederick Children’s Chorus. This is an excellent regional chorus which performs in several concerts throughout the year. On Saturday, Feb 8th, they joined up with the Glorystar Children’s Choir from Potomac, MD, for a chorus and jazz music festival. They rehearsed together that day and then performed in concert that evening. It was a wonderful performance, divided into segments where the choruses took turns on stage either singing in their individual choruses or as a combined group.

Just before intermission, both choruses returned to the stage to perform a couple of songs together. As the children were arranging themselves on the risers, I saw Raeann come out along the front row and hesitate. I could tell something wasn’t quite right. She knows where she’s supposed to be and who should be with her, but apparently those two weren’t matching up right. She stood with a look of fear and bewilderment, and unfortunately, maybe her parents were the only ones to notice at first. The kids took their places and Raeann stayed put where she was on the left side of the front row. The conductor from the Glorystar group took her place on the elevated step in front of the choruses, and the singing began.

Maybe 20 seconds into the song, Raeann obviously came to a decision. She was definitely not in the right spot. While continuing to sing, she stepped forward! There were microphones set up along the front of the stage, and for the briefest instant I thought to myself, “My god! Does she have a solo?!!” Uh, not so much.

Now, I would think that most kids, if they were in her shoes and actually came to the decision that they needed to move to another spot during the song, would step over quite directly and quickly – a second later and the switch would be made. Raeann, on the other hand, calmly stepped out as if in a wedding march! I can only imagine what the conductor was thinking as this strange girl from the other chorus decides to go on her own little walkabout right in the middle of a performance! Raeann walks forward to the front of the stage past the microphones – still singing – and turns left. She walks behind the conductor’s back (in between the conductor and the audience), across the front of the stage and then turns left again to rejoin the chorus in the front row, now on the right side of the stage. She never stopped singing.

Andrea and I sat there, mortified, through the whole procession. I don’t know if Raeann felt any better in the new location, but at least she did stay put the rest of the way.

After the show Raeann felt bad about what had happened and where she had been. Thankfully, her conductors from FCC took it in stride and didn’t make a big deal out of it. Hopefully, Raeann has been able to learn a lesson here. As it turned out, several kids were in the wrong location, apparently as a result of the other conductor switching the placement of the alto and soprano sections, as compared to what the FCC kids were used to.

Raeann’s decision to move, I think, provides an interesting window into the workings of this autistic mind. She knew she should stand in place. She knew she should be in HER place. When there was a conflict between the two, she judged it more important to get in her place than to remain in place during a song. Her ability to assign appropriate priorities of importance is somewhat off. She was probably oblivious to what her changing position would look like to the audience, as most kids with autism have a hard time assuming someone else’s viewpoint, and perhaps that’s why she didn’t recognize the importance of staying put. There are certain things most people naturally know or understand, that someone like Raeann actually needs to be told. Apparently, don’t go wandering around mid-song is one of them!

Tuesday, February 10, 2009

Raeann and Langauge Arts in 8th grade

Just emailed this to few folks; thought I post it here for posterity's sake.


I’m not sure what the solution is here, so I’m looking for any advice. As you know, Raeann requires support at home to get through 95% of her homework. That’s a given and we accept that. For math, science, social studies and other classes that’s generally not too big of a deal. Between the two of us, Andrea and I either know the material or can quickly review a couple of pages in a book and be up to speed enough to provide Rae with the support she needs to get through her homework.

The real problem surfaces in language arts, where she’s required to read several books and then take notes and write summaries, tasks which both absolutely require our assistance. In the last few months she has had to read The Diary of Anne Frank, The Red Kayak, and now Lily’s Ghosts. For Anne Frank, we were provided section summaries that did a very good job of summarizing chapters of the book. Those summaries almost made it possible to help Raeann without reading the whole book.

Basically we’ve had the following choice: either A) one of us reads her books also, or B) we don’t and she’s left with no one to support from home (in which case she would be unable to produce an adequate summary). For Lily’s Ghosts, they didn’t do any summary work at school – it was all homework. Thus far we’ve read the books, but it hasn’t been easy. Good grief! Like we don’t have enough to do already as the parents of a kid with disabilities, not to mention full time jobs and two other kids! We’ve got to cover her entire reading list, too???

So, what’s the solution here? Are we just screwed as the parents of a kid that needs this level of support? Is there something else we can demand or expect the school to do to help us support her at home?

Monday, December 15, 2008

Oh, my! Would you just look at the time!!!

I just took a close look at a calendar and realized that it's time once again - Time to start training for my next marathon!!! The party's over! Let the games begin! High mileage, shoe-demolition weeks, hill repeats, speed intervals, trails, dark roads, frozen sweat-encrusted running hat, tempo runs, weekly camelbak-armed long runs with Gu's and Endurolytes, bloody nipples, Bodyglide galore! Blind, raw determination! Bring it!!!

Can you tell I've had my morning caffeine?

So here it is: on April 11, 2009, I'll be running in the inaugural Illinois Marathon (www.illinoismarathon.com) which will be held on the campus of my alma mater, University of Illinois, covering sections of Champaign and Urbana. It's sure to be a flat and fast course, and the finish is on the 50-yard line of Memorial Stadium!

The stars and planets have really aligned for me on this one. I haven't been back to the campus in about 15 years, and only get back to Chicago maybe once a year, but our family had already planned our next trip back to be during my kids' spring break. Spring break just happens to cover the weekend of April 11. And on top of that I have a niece going to school there and therefore should have someone to watch kids so Andrea can run the 1/2 or the 5K there. And just maybe Lincoln will run his first 5K!

Tuesday, November 25, 2008

Stopping By Dollar Store on a Snowy Evening...

A friend was recently looking for a little poetry help for her son, who was tasked with writing a poem about the Dollar Store. With apologies to Robert Frost, here's my contribution:

Stopping By Dollar Store on a Snowy Evening

Whose aisles these are I think I know,
With Gummi Bears and fuchsia bow.
I hope none see me stopping here
To watch this store fill up with dough.

My little purse must think it queer
To stop without a Macy’s near.
Between the goods of China’s make
The cheapest shopping – have no fear!

It gives its empty pouch a shake
To ask if there is some mistake.
The only other sound’s the clink
That pennies, nickels, dimes do make!

Dollar Stores are lowly, rank, and cheap,
But I have promises to keep,
And crap to buy before I sleep,
And crap to buy before I sleep.

Wednesday, October 8, 2008

Wineglass Marathon - October 5, 2008


I’m not sure if visiting my in-laws was an excuse to run a marathon or if running a marathon was an excuse to visit my in-laws, but however that works out we found ourselves at Steve and Polly’s doorstep in Campbell, New York, late last Friday evening. Their home is strategically located at the half-way point of the Wineglass Marathon, a point-to-point marathon running from Bath to Corning, primarily along the Cohocton River valley.

After a lazy Saturday morning, Andrea and I grabbed the kids and drove the course from start to finish. As we crossed the town center of Bath, I came to realize that this marathon was a symbolic representation of “This Is Your Life, Andrea!” The hospital where she was born was located about a ½ mile down the road from the start line. Her very first job as an office clerk was in Bath along the course. Later the race would pass by her school from kindergarten through high school, her first boyfriend’s house, and a few blocks from the home where she grew up. Twenty-six point two miles of Memory Lane!


I, of course, mainly focused on the course elevation changes, which were almost non-existent! I noted one hill in mile 5 after a left turn, and then another hill after passing through Campbell. Neither hill looked bad, and everything else was blissfully flat!

Completing the course drive-through left us in downtown Corning right next to the race expo. I picked up my bib, shirt (long sleeve Podium technical shirt from Brooks), and gift bag and quickly looked through the goods on sale. Not a huge spread, but then this is not a huge race. If you needed something, it was probably there, and the prices looked good.

Next stop: Sorge’s Restaurant (great pasta!) and getting to meet my online friends from the Marine Corps Marathon Forum, Kevin and Gwen (aka cobweb and CTD – Crash Test Dummy). We all had a great time getting to know each other; we talked lots about running, kids, how to feed lizards, and of course, The Accident. Last February Gwen was in a horrible head-on car accident on icy roads. She was left with two fractured vertebra in her neck, along with numerous other injuries. Her presence at dinner Saturday night alone is remarkable, and the fact that she was also ready to toe the line the next morning for another marathon is…well, I don’t think I know a strong enough adjective for it. Jaw-dropping? Miraculous?

On Sunday morning Andrea and I were up by 6am and at the Phillips Lighting factory getting ready for the race start by a little after 7. We let the kids sleep in; Andrea would return and pick them up after I started. The weather was quite chilly – around 38 F – and very foggy. We soon hooked up with Gwen and Kevin and got in a quick “before” photo of the 3 of us. As we dressed down to our racing shirts and bibs, I looked at their numbers in surprise: Kevin 167, Gwen 168. I looked down at my own shirt: 691. What’s so remarkable about that? Well, I was looking at my number upside down. Right side up my number was 169. Over 500 runners there that morning and somehow the 3 of us ended up with sequential numbers! How wild is that?
Soon enough it was time to start running! And good thing, too, because we were all getting pretty cold outside! We gathered at the start line and Gwen and Kevin moved a little further back in the pack. They were figuring on running 10 or 11 minute miles. My goals were to 1) Finish healthy, 2) get under 4 hours for a PR, 3) go sub 9 minutes per mile pace (meaning just under 3hrs 56 minutes), and 4) go faster than that to whatever extent my body would allow. With those goals in mind I was shooting for running mainly in the 8:40s throughout most of the race, if all went well. I assumed the start would be a little slow so I was thinking of about 9 minute miles for the first two.

I waved to Andrea as I crossed the starting line and we were off! It didn’t take long for me to be pleasantly surprised that I was feeling pretty decent that morning, and I quickly settled into a very comfortable, steady pace. It usually takes me a few miles to feel like that. Mile 1 brought a mild surprise. I checked my watch expecting to see 9 or 9:30, and found 8:34 instead. Cool! For Mile 2 I tried to remain relaxed and ran an 8:35 split. Ok, that settled it. 8:30s are a bit faster than I expected, but based on my level of effort, I decided that I would try to stay right there, at least for the early stages of the race.

After the first couple of miles I was no longer very cold, and temperature was a non-issue for me the rest of the way. We weaved our way back and forth through the center of Bath and then headed southeast out of Bath toward the next town, Savona. I remember crossing an intersection and hearing a lady squeezing a loud squeak toy from a car. Made me think my dog was coming!

Then we were soon running down country roads that were completely immersed in a dense, dense fog. I chatted a bit with a couple of other runners. One, a fellow mechanical engineer, was running the first leg of a relay. The other, a guy a couple of years older than me named Matt, was running in his first marathon. We were all feeling decent at this point. Running in a fog was kind of cool, and it didn’t allow us to dwell too much on the long, seemingly endless straight-aways because we simply couldn’t see more than a few hundred feet ahead! However, I looked forward to the sun burning through so that we could get a good view of the yellow and orange forested hillsides that I knew would surround us all along the course. Mile 3: 8:33. Mile 4: 8.37. Very steady!

The first hill was after a left hand turn during the fifth mile. It was nothing major, but enough to slow my Mile 5 split to 8:48. Miles 6 through 9 were flat and there was nothing to change my strategy. I still felt fine and I was still turning in splits in the 8:30s. Repeated checks of my overall race pace showed a consistent 8:38. We arrived to cheering crowds lining the streets in Savona around Mile 9. This would be typical for the race: long stretches with relatively few fans, but then many more fans in each town. Right there in downtown Savona was the squeaky lady again! It was actually a bicycle horn that she was squeaking, and I thought it was really a good, uplifting noisemaker! Mile 6: 8:40. Mile 7: 8:33. Mile 8: 8:39. Mile 9: 8:37.

Miles 10, 11 and 12 continued through peaceful, country roads and the sun was finally starting to burn through the fog at times. I noticed that one of the women running near me was being paced by friends of hers that were doing the relay. Now that’s a cool way to provide a friend some support! Mile 10: 8:39. Mile 11: 8:34. Mile 12: 8:40. Race pace still 8:38.

Mile 13 lead us into the small town of Campbell, Andrea’s home town and the first point at which I expected to see my fans. Sure enough, right after the mile 13 point and another water/Gatorade station there they were cheering me on! What a huge uplift to see family in a marathon! I high five’d all of them (Andrea, the kids, and my in-laws), and then some other lady who apparently thought I was out to high five anyone I could (I guess I probably was!), and then I was off for more miles! My pace definitely picked up for a few minutes thanks to the emotional boost. My 20K split was about a 4 minute PR at 1 hour, 47 minutes and change! Mile 13: 8:30. ½ Marathon: 1:53:19. Mile 14: 8:38. Race pace still 8:38.

Behind Campbell, we soon ran up our second hill in Mile 15: ~8:50. Then we went flying down the back side and returned to the flats, heading for the tiny town of Erwyn Mile 16: ~8:31. During the 17th mile I caught up to Matt once again, and met his wife Michelle who was briefly riding alongside Matt on a bike. We ran together for a short while before I moved ahead. Mile 17: 8:31. Race pace 8:38. I start having delusions of grandeur!

In the next few miles, as we passed through the towns of Coopers Plains and Painted Post and I saw my family once again, my effort remained steady, but I found my pace fading a bit. Mile 18: 8:47. Mile 19: 8:49. Mile 20: 8:53. Finally, my race pace was moving into the 8:40s.

It’s often said that the marathon consists of 2 separate races: the first 20 miles and then the final 6.2. I’ll vouch for that! The miles now had become very painful. No injury, just increasing pain from the waist on down. The next couple of miles were probably the low point of my race, as I knew any hope of finishing as strong as I began was gone. My slowdown continued, and even when my family drove by me and cheered me on from the van, I could do little to acknowledge them. At some point along here Matt caught me and passed me for good. Mile 21: 9:25. Mile 22: 9:51.

When I saw that last split, nearing a 10 minute pace, I became a bit alarmed. I could accept that any hope of going sub 3:50 was fading, but I really didn’t want to be flirting with that 3:56 (9 min pace). I doubled my efforts and surged as much as possible as we entered Corning. Mile 23: 9:29. Mile 24: 9:37.

In the last couple of miles, I walked briefly at the aid stations. My familiarity with Corning helped me pace myself a bit for the finish, as I had a very good feel for when I was just a ½ mile out. Mile 25: 9:35. Mile 26: 9:43.


The course finished by crossing the Chemung River over a foot bridge which is slightly downhill. I, um, sprinted, sort of, to the finish, with various leg muscles beginning to give me some funky twinges. Somehow I managed to see Andrea and the kids once again along the bridge. Crossing the finish line I hit my GPS for a 3:53:15 a PR of about 7 ½ minutes!

Post race I was in bad, bad shape for a while. My legs and hips were screaming at me and I walked a bit like a 13 month old! I passed on pizza. I passed on bagels. I attempted some good chicken noodle soup, but I really couldn’t take it in. I drank lots of water as my son Lincoln tried to help me by messaging my calves!

Eventually, I checked the time and decided to try and get myself back to the finish line to cheer on Gwen and Kevin, if I could find them. I staggered over toward the finishing chute. Looking up, I was fortunate to catch a momentary glimpse of an image that – after all the miles of country roads, changing leaves, and cheering fans are left behind; after the pain of pounding exertion has long since faded from memory – will remain permanently etched in my mind. Standing there a few yards past the finish line were Gwen and Kevin, locked in an embrace. I have to believe that in that one moment was the release of a flood of emotions built up over a period of time much greater than the 4 hours and 20 minutes or so that it took for them to run the Wineglass.

Gwen’s real marathon began 8 months ago on a cold, icy day in February. I can’t even begin to imagine what it has been like for Gwen and Kevin, but I’m willing to bet that this last 26.2 miles of her marathon, painful as I know they were, may actually have been the easiest.

I’m not sure who placed first in this year’s Wineglass Marathon, but I know that the winner was the one who finished in a chip time of 4:20:41!

Saturday, August 9, 2008

My almost 9 year old son Lincoln just finished a two-week stint at a horseback riding day camp. They have a ton of things to do there besides ride horses, but they pretty much do some riding every day. Well, on Friday morning - the last day of camp - parents were invited to attend to watch their kids do some riding in the ring. Andrea and I both played hooky from work for a bit so that we could see it. Lincoln was in a group of about 7 kids his age or a little younger, all of them pretty new to horseback riding. Three of them were riding ponies.

So the kids and their mounts are riding in line around the ring for a bit. Then they take turns doing a lap, some kids doing a little posting and trotting, others content to simply walk. On Lincoln's 2nd day at camp he was bucked from his horse, so he was understandably in the latter group.

Near the end of the session things got interesting. One poor boy was trotting with his horse and then I think the horse started to canter. As they took a turn they unfortunately travelled in paths of dissimilar turning radii; ie, the horse turned, the boy didn't. He hit the ground very hard on his side.

Now I don't think he was seriously injured in any way, but for the next five minutes or so he screamed like mad. He was hurting and quite scared, and he just screamed and screamed inconsolably. He wasn't answering any questions about where he was hurt or if he understand what they were saying, he just screamed. Amidst it all the poor guy even peed his pants because he couldn't hold it.

While the trainers and camp councillors tended to the poor boy, the rest of the kids sat on their horses, all more or less in line still, but without any of the camp handlers nearby. They were right in front of us, though, and we could hear their dialogue crystal clear. Group panic was setting in. It went something like this:

"I don't think I wanna ride anymore."

"Me neither!"

"I wanna get off. I wanna get off my horse!"

"I don't even want to be a cowboy!"

"Why does anyone even live in Texas anyway?"

One child's on the ground screaming bloody murder, and I was ready to bust a gut laughing at that last remark! All I could think of was my friend Nita from the Marine Corps Marathon forum, who is from Texas!

Monday, July 7, 2008

Autism Speaks 5K - Race Day Report

July 4th was a fantastic morning for us! Things were quite frenetic as soon as we arrived at the Potomac Library - my wife and I had family members to get signed up, donations to turn in, race numbers to pickup, race shirts to pick up, about 20 team members to find, about 25 team t-shirts to hand out, race numbers to pin on, including helping kids (although I totally forgot to pin my own bib on!), and some team pictures to arrange. We also did a quick video interview with Diana Hosford, the woman in charge of media contacts for Autism Speaks. We had about 30 minutes to do all that!

As luck would have it, we parked real close to the Frederick Steeplechaser contingent and also Chris (CWCastelli from the Marine Corps Marathon forum), who promptly stepped up and introduced himself. Chris was running for his best friend's daughter. We made our way over to the registration tables and started greeting team members as they arrived. This included Holly (mybleweyedgurl), Jerry (X_39_and_holding_X), Kelly (Run4Cookies), and an MCM forum lurker that has come out of the woodwork, Steve (now JeromeBettis). It was great to see you again, Holly and Jerry, and a pleasure to meet you, Kelly, Steve and Chris!

We had a huge team there to support Raeann and help the cause (raising money to fund Autism research, increasing autism awareness, advocacy for families with autism, and other family services). It was so wonderful so have such a show of support! I'll have many pictures and video links to post soon, but I'm still gathering those.

The official race warm-ups started at 7:30, and we moved our group closer to the announcer's table so we'd have a good view. Just a few minutes later and Raeann was doing her thing! She stood up in front of roughly 2000 people and proceeded to sing our anthem beautifully! As a parent, it just doesn't get any better than this! It was hard for me to see clearly because of the tears in my eyes! Raeann has had the opportunity to do several events like this now, but this was easily the best I'd ever heard her sing! Later in the day I asked Raeann if she was nervous when she was up there. She said, "Not really." She simply loves to sing!

Well, after that I was emotionally and physically drained, and there was a race yet to run! I got in a quick hug with Rae and then we were all off toward the starting line. I lost track of almost everyone in the process, except my co-worker Tony, and Kelly. By the time I got the end of the starting line crowd, the race had apparantly already started; I could see folks way up ahead already running!

And soon we were off. The first mile was difficult because of all the navigation required. I had started way in the back which, of course, made it worse. After about 1/2 a mile I caught up to my wife Andrea, her friend Renee, and my niece Lexi, who at 13 was running her first 5K. I said a quick hello and kept going, along with Tony. I hit Mile 1 at 7:48, right about where I was hoping to. On a warm, humid day, on a hilly course, and after having taken the past 13 days off (well, except for running the 200 meters on Wednesday) due to a mild calf strain, all I really was hoping for was stay below an 8 minute per mile pace. So, so far so good!

By mile 2 the runners had thinned out enough so that we no longer had to hesitate and then surge to get through. Mile 2 has more downhills than ups, so I kept my pace up pretty well. My Mile 2 split was 7:43. Tony fell back off the pace in the 3rd mile as the course become hillier, with a few good climbs tossed in. I finished in 24:14 for a 7:48 pace and 251st place out of 1393 (top 20%). I FINALLY ran a 5K at a steady pace! Not a great 5K time for me, but it did beat my time from last year by about 20 seconds.


In checking the official race results, there were 1393 5k finishers, and here's what I've got for our MCM forum friends:


Jerry 219th place 23:47 (7:40 pace) (Jerry, I'm sure you started way ahead of me or else I might have found you and ran with you some!)


Ron 251st place 24:14 (7:48 pace)


Kelly 501st place 27:40 (8:55) Excellent job!! I think I heard this was a PR for you?


Andrea 548th place 28:14 (9:06) Not a PR, but respectable!


Steve 838th place 31:18 (10:05)


Chris 946th place 32:44 (10:33)


Holly 1309th place 43:12 (13:55) A respectable, on the road back 5K. And I must note that Holly's generocity is inversely proportional to her place!


Our family had a wonderful time and I'd like to thank everyone for their long-distance well wishes and support! And a special thanks to you MCM forum and Frederick Steeplechaser friends who were able to join us yesterday in Potomac, especially on a holiday when I know many of you have other family obligations to attend! I hope it was as enjoyable for you as it was for us and Raeann! It was also a real pleasure meeting Kelly, Chris and Steve.


Finally, thanks for all the donations to help those that are coping with autism! Raeann's Runners has now topped the $2000 amount for the 2nd year in a row! (For anyone interested, donations can still be placed via the web for the next couple of weeks - see my original autism race 5k thread for info, or send me a note.)


Thank you and I hope you all had a great Independence Day!