A Parent's Perspective

One way we can value, accept, and include people with Down syndrome is to imagine walking in the shoes of their parents.  This parent explains two challenges of caring for children with special needs: social isolation and uncertainty about the future.

http://www.ellenstumbo.com/confessions-of-a-special-needs-parent-the-hard-things/

The Inclusion Confession

One of my oldest friends is David Seidel.  We grew up in the same neighborhood, playing together as young children and then going to the same elementary and high schools.  A few months ago, David shared on Facebook a beautiful yet convicting prayer from Rabbi Rebecca Schorr.  It challenges all of us to take a second look at the ways we accommodate our brothers and sisters with disabilities – or the ways that we think we do.

http://zehlezeh.wordpress.com/2013/09/12/the-inclusion-confession/

World Down Syndrome Day

3/21 was selected for World Down Syndrome Day to symbolize a third copy of the 21^st chromosome in people with Down syndrome.  World Down Syndrome Day was established in 2006, and in 2012 it was first officially recognized by the United Nations.  Diana Stolfo, a remarkable young woman with Down syndrome, gave a speech to the United Nations that day to commemorate the occasion.  Today is 11/21, which means that it’s exactly four months until World Down Syndrome Day.  It’s never too early, however, to celebrate the value, acceptance, and inclusion of people with Down syndrome.  Read Diana’s inspiring speech here:

http://www.ndss.org/About-NDSS/Newsroom/News-Archive/World-Down-Syndrome-Day-2012/Diana-Stolfos-World-Down-Syndrome-Day-Speech-from-UN/

Eleventh Ride in A Year of Centuries - A Benefit for the Middle Georgia Down Syndrome Society

Yesterday I had a terrific if challenging century on behalf of the Middle Georgia Down Syndrome Society (MGDSS).  I planned it around the first day of a mini training camp with my cycling team, The Georgia Neurosurgical Institute.  The team rode from Macon to Irwinton, where we spent the night at the Blue Goose on Main.  (Robert and I visited the Blue Goose a couple of months ago; see my post from September 22.)  Then, today we rode back to Macon.  It was a wonderful weekend of riding and enjoying the company of my teammates.

I was thrilled to be invited to join the Georgia Neuro team a few months ago.  Robert has been on it since its inception, and so I have already been a groupie.  I have had fun helping them with the Macon Cycling Classic each spring, especially serving as a podium girl.  I get to kiss all the guys on the podium!  European style – once on each cheek – but kiss them nonetheless.  It’s a high point of my year :)  Now I get to represent the team in an official capacity as a volunteer as well as a racer.  Just to be clear: I’m still racing only time trials – no mass-start races (road races or crits).

The team started from Hudson & Marshall, our friend Monty’s office in Bolingbroke.  To get my century yesterday, I rode from my house to Bolingbroke beforehand.  I had plenty of time to get to Bolingbroke for our 12:30 P.M. team start.  It was nice not to have to set my alarm clock!  After a leisurely breakfast and a little laundry folding, I set out on my century.  It was a foggy morning, and so I used my headlight and blinking taillights.

My route to Bolingbroke took me through the Piedmont Wildlife Refuge (PWR), one of my favorite nearby places to ride.  As I rode on Round Oak-Juliette Road, the main road through the refuge, I noticed a number of trucks parked alongside the road.  I figured that it must be one of the few days when PWR is open for hunting.  I checked on-line, and sure enough, November 14-16 is one of three three-day windows when deer hunting with firearms is permitted for this season.

I felt really good on my ride to Bolingbroke.  Most of the team was there when I arrived, as was Chad’s wife Kathy, who graciously agreed to drive Robert’s and my Nissan to Irwinton with everyone’s overnight bags.  I had plenty of time to eat the lunch that I had packed for Robert to bring me in the car.

I love sardines, especially in Louisiana hot sauce, and they are a great protein source for long rides.  However, I’m sure that Kathy was glad that I disposed of the empty sardine can in the Hudson & Marshall dumpster rather than stowing it in the Nissan.

Kathy also took a nice team photo before we headed for the Blue Goose:

(L-R): Jeff (a.k.a. Stony), Tina, Tyler, Tony, Robert, Bill, me, Chad, and Ron

The fog lifted late morning, and in the afternoon the sun even shined.  It was a beautiful November day in Georgia.  I was having a great time riding along with the team.  After a while, however, it started getting harder for me to keep up.  That’s not surprising because I had already ridden at a decent pace for the 44 miles from Monticello to Bolingbroke.  Not to mention, the guys on my team generally ride pretty hard, even without attack zones.  At about mile 70, I was riding next to Stony and having a nice conversation with him.  He told me about his son, who is a high school senior, looking at various colleges.  One of those is Carnegie Mellon, Jeff’s father’s alma mater.  As Jeff talked about Carnegie Mellon, I started imagining that my head was a watermelon and that it was exploding.  That’s when I decided that I needed to back off.

At first the team waited up for me, but I asked them to please continue without me.  I was familiar with the route, and I knew that they and I would both be happier going at the pace that suited each of us best.  I struggled more than usual for the remaining solo portion of my century, but I did just fine by taking a banana stop and a Clif Bar stop.

As I pedaled along, I thought about the children and adults served by MGDSS.  Perhaps my century yesterday is a little like the journey of people with Down syndrome.  They might have farther to go than other people, and it might take them a little longer to get there, but we are all one team.

At last I arrived at the Blue Goose!

Although I can’t bring myself to put out any Christmas decorations until at least December 1, I have to admit that this sight warmed my heart:

Everyone cleaned up and enjoyed the mild evening outside, as indicated by Bill and Ron.  This picture is kind of blurry, but that’s because they’re drinking beer:

Bill and Ron are legendary in the Macon cycling community.  They are two of my heroes.  They are both 60 but ride better than most people half their age.  I hope I can do half of what they do when I’m their age.

Robert had taken everyone’s order ahead of time for what kind of meat they wanted, purchasing some very good quality steak, chicken, and salmon at Fresh Market in Macon before the ride.  Tyler was an excellent grill-meister, somehow managing to have everything get done at the same time.  With some delicious sides provided by Chad, Tina, Tony, and Tyler, we had a fine supper together.

We Georgia Neuro riders are par-tay animals!  Everyone was in bed by 9:00 P.M.

After a good night’s sleep, we all got up around 7:00 A.M.   Robert served as a short-order cook for breakfast:

He was zipping around so fast in the kitchen that this photo turned out blurry.  I wanted to take a second one of him stylin’ in his apron, but he said, “Ain’t nobody got time for that!”

Robert cooked scrambled egg concoctions to order.  We could add ham, turkey, chicken, bell peppers, onions, and/or tomatoes.  Between that, the banana ginger bread that I had made (see recipe from my post on October 31), and orange juice, we were well fueled for our 60-mile ride back to Macon.

Although I certainly wasn’t fresh as a daisy, I really felt better than I expected on this morning’s ride.  And fortunately, the guys went a little easier today than they did yesterday.  As we approached Macon, we had a special treat; Andy Tice joined us for a few miles.  Andy and his wife Shelley are one of our team sponsors.

At around mile 50, I had to slow down a little.  I ate the rest of my bike food, and thanks to Robert letting me draft off of him, I was able to catch up with the rest of the team just as we got to Bolingbroke.   I definitely pushed myself by riding as far and hard as I did this weekend, but I’m so happy I did it.  Thanks, everyone, for helping me get there!

A High School Hero

Need a boost to your spirits?  Take a few minutes to watch this video about high school student Demetrius de Moors, who faced Michael Lind, a student with Down syndrome, in a very special wrestling match:

http://www.uproxx.com/sports/2013/09/georgia-high-schooler-wrestled-kid-syndrome-became-new-hero/

Georgia Gives Day

Georgia Gives Day is an opportunity to consider the important role that nonprofits play in our lives and communities.  It’s like a “flash mob of giving” focused on one 24-hour period to see how much we can raise for Georgia’s nonprofits.  Several of the charities I’m supporting in A Year of Centuries are taking part in Georgia Gives Day: Partnership Against Domestic Violence (Face to Face program), Bicycles for Humanity, Southeastern Greyhound Adoption, and the Ferst Foundation for Childhood Literacy.

Each day during November, I am consciously giving thanks for at least one good thing in my life.  It’s such a powerful way to stay positive and energized.  Today I am thankful for the numerous nonprofit organizations that serve people and animals in need.  If you’d like to join me in this celebration, please make a donation through the website of any of my charities (click on the links to the left), or visit www.gagivesday.org.

The "R" Word

If you’re referring to a person, simply use the term Down syndrome, developmentally disabled, or other appropriately accurate term.

 

If you’re referring to something besides a person, try one of these alternative words that are way more descriptive and interesting: absurd, bizarre, embarrassing, farcical, foolish, incredible, ludicrous, nonsensical, outlandish, outrageous, preposterous, ridiculous, silly, or unreasonable.

I Effing Hate Holland

My stepbrother Duane and his wife Jane have a son named Will.  Will was born very prematurely (at 25 weeks) and has a number of developmental disabilities.  Nevertheless, Will is doing quite well, largely thanks to his parents’ unwavering love and support.  I enjoy following Jane on Facebook, where she often writes about life with Will.  She faces their ups and downs with wonderful grit, grace, and humor.  Even though Will doesn’t have Down syndrome, Jane has helped open my eyes to all children with special needs.

Most of the time, Jane is extremely positive.  Even when she writes about the more difficult times, I’m glad for the reality of the perspective she provides.  A few months ago she linked to a blog written by another woman whose son has multiple disabilities.  It’s definitely worth the read:

http://specialneedsrealitytv.wordpress.com/2013/06/06/i-effing-hate-holland/

Welcome to Holland

I’ve been reading Dear Abby for years, and several times she has reprinted a wonderful essay called “Welcome to Holland.”  The essay was written by Emily Perl Kingsley, the mother of a child with Down syndrome.  It compares having a special needs child to planning a trip to Italy and ending up in Holland.  Even though the rest of us don’t truly know what the parents of children with Down syndrome face, this essay can start building a bridge:

http://www.our-kids.org/Archives/Holland.html

Tomorrow I’ll post an interesting counterpoint to “Welcome to Holland” from another mother of a child with special needs.

First Runner with Down Syndrome Finishes NYC Marathon

What a fantastic story!

http://www.today.com/health/first-runner-down-syndrome-finishes-nyc-marathon-8C11518983

Fried Green 50

During the shorter days of fall and winter, much of my riding is on my cyclocross bike, Frankenbike.  (Robert built it up for me from a generic frame and spare parts.  I love Frankenbike.)  It’s the best way to ride after work during these months because I can ride on the sparsely traveled dirt roads near my house using a headlight and taillight.  The best dirt ride I do all year, however, is a daytime ride: the Fried Green 50.  My friend Monty has been hosting it for a number of years.  It starts in Juliette, the small town featured in the wonderful movie Fried Green Tomatoes.  From there, the ride goes all over the Piedmont Wildlife Refuge (PWR), one of the most beautiful places in Georgia.

The Fried Green 50 is also a great way to interact with a different part of the cycling community.  Some of my cycling friends are strictly roadies.  Other cycling friends ride some paved and some dirt, usually doing more of one than the other.  Still other cycling friends are pure mountain bikers.  Many cyclists from the latter two groups come out for the Fried Green 50.  Today’s ride had over 75 participants.

I had really been looking forward to this ride.  As a bonus, we gained an hour as daylight savings time ended last night, making it extra unnecessary to set my alarm clock for this morning's 10:00 A.M. ride start.  Sure enough, I woke up at about 7:00 A.M., feeling well rested.  Robert headed to Juliette around 8:00 because he was volunteering at the ride.  On the other hand, I had a good chunk of time for a few household chores.  As much as I love the multitude of activities that I do, I also love being at home.  Sometimes my home time suffers, though.  I can always tell that I need to tone down my schedule when I start fantasizing about cleaning my bathroom.  This morning that fantasy came true.  I also cleaned out my hummingbird feeder and did some laundry.  I was about to change the sheets on the bed when I realized that it was 9:25.  I had meant to leave an hour before the ride start, but somehow I confused myself when I thought about the 10:00 ride seeming like it was at 11:00.  I immediately dropped what I was doing, changed clothes, and got to the ride just in time.  Whew!

I took a quick nature break before I hopped onto Frankenbike, dashing into the first adequate looking clump of trees.  D’oh!  The area was marshy, and my right foot got covered in muck.  Oh, well.  I figured that I would get dirtier than that before the day was over.  I didn’t get dirtier, but I did get wetter.  About five miles into the ride, we had our first of five creek crossings for the day.  The water was about a foot deep, and so all of the muck washed right off of my shoe.  Here’s a shot of the third creek crossing:

Monty wasn’t able to place signs or use paint in the PWR.  Therefore, in those areas he marked the route with flour:

Today had pretty much optimal fall weather.  That made the incredible scenery even better.  The foliage in Middle Georgia is just starting to hit its stride as far as fall color goes.  These pictures really don’t do it justice:

Additionally, the tasseling grasses were delightful:

Alas, the day was not perfect.  At about mile 31, I came upon this poor guy carrying his bicycle:

He flatted both tires at the fourth creek crossing.  His tires were tubular, which can’t be patched.  At least I was able to call Monty on my cell phone to come pick him up.

Even when things don’t go well – or even when they go terribly – it’s amazing how they can turn around.  This sign was yet another spur for me to be grateful for my recovery from my crash.  The lush growth of trees behind the sign makes it hard to believe that the area was decimated by a tornado.

A number of areas of the PWR are great for biking, but many paths are open to foot traffic only.  Toward the end of the ride, there was about a half-mile section that we had to walk:

I had fun making sure I walked fast enough to keep my bike computer going.

In the last few weeks I haven’t ridden with much intensity.  That’s a large part of why I felt so fresh today.  It really didn’t seem like too long before I was back at Juliette:

Ocmulgee River just upstream of the dam at Juliette

Riding is fun, but cyclists also like to continue the celebration afterwards.  It’s not uncommon to have a good brew to toast a good ride and good friends.  My friend Stony shared one of his with me.  I had never had this variety of Terrapin, which was both delicious (hoppy and very flavorful) and particularly appropriate for today:

This stray dog looked about as content as I felt:

It was one of the best days I’ve had in a while.  Thank you, Monty, and everyone else who made it so wonderful!

And get well soon!  (He broke his collarbone a few weeks ago at a cyclocross race.)

Breakfast with Eli

This morning I got to have breakfast with Eli.  Eli is 10 years old and has Down syndrome.  His dad Tom is a cycling friend of mine.  Tom and Eli have breakfast at Waffle House every Friday morning, and they graciously agreed to let me join them today.  It was kind of like an extension of Halloween, but it was all treats, no tricks.

Tom had let me know beforehand that Eli doesn’t talk much due to a speech disorder called apraxia.  Eli communicates a lot, however, through his wide, bright smile.  The two of them were already at Waffle House when I arrived, and as I approached their table, Eli grinned and patted the seat beside him, indicating that I should sit next to him.  Talk about a warm welcome!

With Halloween being yesterday, of course I had to ask Eli what he went as to go trick-or-treating.  He told me Mario, as in Super Mario.  Also, he likes Whoppers candy.  Then I told him that I dressed up for Halloween, too, playing the Mad Doctor at Haunticello, which is trick-or-treating on the square in my town.  This was my 16^th year as the Mad Doctor; it’s a highlight of my year!  I showed Eli a picture of me from yesterday, but I don’t think he liked it very much.  Understandably, he’s kind of scared of doctors anyway.  I told him that I play a nice doctor who gives out candy.  Candy shaped like body parts, but candy nonetheless.

Eli is a whiz with an iPhone.  Tom kind of has to keep an eye on his when Eli has it.  In fact, while we sat there, Eli dialed a friend of theirs.  Tom quickly recovered his phone and disconnected; it was only a little past 6:00 A.M. where their friend wasJ  Later, Tom said that Eli often goes to the “favorites” list on his phone.  Eli finds the number of his older brother (who does not have Down syndrome) and deletes it!  Ha ha – sibling rivalry, just like in any other family.

I could understand most of what Eli said, but sometimes Tom interpreted.  At one point, Tom thought he misheard something that Eli said and asked him to spell it.  Eli did, and Tom realized he had heard it correctly.  I was amazed to learn that Eli is such a good speller.  Tom said he has beautiful penmanship, too.  Although I’ve met people with Down syndrome before, Eli taught me that I’ve had some preconceived notions about what people with Down syndrome can do.  I’m sure I have more to learn.

My favorite part of our meal together was when Eli leaned over and gave me a big kiss on the cheek!  Actually, he kissed me three times.  That made me feel better because I left my house this morning before my husband got up, and so I didn’t get my usual kiss from him.  Tom described how Eli is always so friendly to the other Waffle House customers.  Most of them are kind of gruff old guys, and they are somewhat taken aback by Eli’s openness.  However, everyone in the restaurant winds up smiling.  I imagine that we all could take a cue from Eli.