A-little-father/son-pre-kindergarten-talk.Luke-is-always-very-curious-about-how-we-experienced-things-when-we-were-his-age.I'm-not-exactly-sure-what-James-is-telling-Luke-here.Maybe-he-is-telling-him-that-he-is-beginning-at-least-16-years-of-education.Maybe-he-is-telling-him-that-the-freedom-he-has-come-to-know-at-home,like-catching-flies(it's-true),playing-his-leapster,and-building-forts,all-whenever-he-wants-to,will-not-be-had-at-school.Or-maybe-he-is-telling-him-that-he-really-should-leave-that-top-button-open.I-dunno,but-Luke-was-absorbing-every-word.All-ready-to-go!And-that-top-button,it's-staying-fastened.I-love-that-he-has-a-touch-of-nerd-in-him.After-getting-Wil-on-his-bus(sorry-no-pictures,I-was-busy-questioning-the-driver-about-lack-of-restraints-and-expressing-my-concern-for-his-safety.In-other-words-I-was-too-busy-annoying-the-driver-to-take-pictures.)we-are-off.Along-with-the-dozens-upon-dozens-of-other-kids-from-our-neigborhood. I-think-someone-is-getting-a-tad-nervous.Coming-from-Gainesville,Florida,home-of-the-real-Gators,to-Gamecock-country,we-are-happy-to-take-on-the-Gator-name-at-Lake-Carolina.Entering-his-classroom-and-oh-so-excited.This-is-the-second-time-he-has-seen-Mrs.Mattox;he-greeted-her-with-the-great-enthusiasm-both-times.Sorry-this-is-blurry,I-was-all-jittery-with-emotion,which-came-as-a-complete-shock-to-me-I-might-add.






TO: NDSC Members and Friends
FROM: David Tolleson, Executive Director August 13, 2008

Two weeks ago, the National Down Syndrome Congress joined with other national disability rights organizations to address the new DreamWorks Studios film, “Tropic Thunder”. In conversations with studio executives, our coalition was led to believe that the offending portions of the film were minor and obviously satirical, and would have little impact.

However, last Friday, NDSC Resource Specialist Sue Joe and I were able to see an advanced screening of the film. Journalist Pat Bauer was also in attendance and gives an excellent overview of the film on her blog (

The offending parts comprise a major plot line and, as feared, are already leading to the sale of such items as t-shirts screaming, “You Never Go Full Retard!” On Monday, other national leaders saw the film. The coalition has called for a nationwide boycott. The first one was held last night at the Hollywood premiere. You can see CNN coverage at Pat Bauer’s website and view the Washington Post article at

In addition, this story has also been picked up by ABC News (, The New York Times (, National Public Radio (, Access Hollywood, and press in Australia, Great Britain, and elsewhere.

What can you do to help?

-Contact your local affiliate. Over the past week, we have been in touch with leaders from across the country. Many groups are coordinating their efforts with groups such as The Arc and Special Olympics, and protests are planned for today, when the film opens across the country, through next Sunday.

-Write an Op-Ed piece for your local newspaper, or a letter to the editor regarding discrimination against individuals with disabilities.

-Reading all of the hurtful and hateful comments posted on blogs in response to the boycott can be hard to take. But you could respond—tell your side of the story. Freedom of speech works in our favor, too. (When-our-new-computer-arrives-I-will-share-some-of-my-thoughts-on-this-movie-but-moreso-the-use-of-the-word-ret*rd)

-Consider contacting your local school principal and ask them to be on the lookout for disruptive “Tropic Thunder” merchandise or bullying behavior. A sample letter, provided by the Connecticut Down Syndrome Congress, is attached.

-Does your local theatre employ self advocates? We heard of one theatre who has decided to pull the movie after speaking with an employee. Another theatre is allowing a self advocate employee to distribute literature to those attending the show.

-Share this excellent video, produced by 2008 NDSC Media Award winner Will Schermerhorn for The Arc of Northern Virginia:

-Visit Special Olympics’ new site Take the pledge to support the elimination of the word, and pass the link on to your friends so they can take the pledge, too.

-If you have a middle or high school age sibling returning to school, or off to band camp, football practice, etc., urge them to share with their friends why words hurt and why they should not patronize “Tropic Thunder”. This age group will be a key battleground.

-Sign the online petition at

Though we’re in a busy time of year, with the end of summer vacation and the beginning of school, I believe this is a watershed moment in the disability rights movement. It has been a long time, if ever, that so many national and local organizations have banded together to say, “enough is enough”. ANYTHING you can do is better than doing nothing. Please make every effort to lend your aid – and spread the news – right away. It’s time to put the nation on notice that we will not sit quietly by while our fellow self advocates, friends, children, siblings and co-workers are attacked. People with disabilities have rights and value, and deserve respect. Thank you for your advocacy.

David Tolleson
Executive Director






Swimming, Tubing, and Purple Martins

Ahhh, nothing like the lake on a hot summer day. And nothing like having relatives that have a lake house and boat, on a hot summer day. We are always happy to take my aunt and uncle up on their gracious offer to enjoy the fruits of their labor. That's what family is for, right?

Last Friday we did just that. We packed a few things and took the boys to Lake Murray to join our family for a nice summer afternoon. The little guys love being in the water. (yes, those are pink Little Mermaid swimmies. Who knew swimmies were gender specific?)
Luke, who is not much of a risk taker decided to try something new, tubing. He is out there with his great-aunt giving the thumbs down - meaning SLOWER PLEASE!
Hey, don't let the pontoon boat fool ya, that thing went plenty fast when hanging on an intertube. At least for me. Luke ended up loving it, especially when he and his cousin, Gavin The Daredevil, were out there together. After a little swimming, tubing, and eating we all boarded the pontoon to make our way to one particular island on the lake. An island that, for reasons we do not know, is the largest bird sanctuary in the country. And three weeks every August there is a spectacular show;Purple Martin's come from every conceivable direction to roost on this island. The setting sun is their indication to head home for the night, so we set out to reach the island by dusk. The ride itself was part of the fun. And I don't think any one enjoyed it more than Timothy.
He absolutely loved feeling the wind in his face. He also liked throwing things overboard.
See those shoes on his feet? I love them. They are hand-me-downs from a friend of Luke's. Luke wore them, and now Wil and Timothy are wearing them. Well, were wearing them. Timothy threw one of them overboard! A valiant effort was made to retrieve the shoe but to no avail. Turning a pontoon boat around is not fast or easy. But we had our sites on it. I was sure we would get the shoe back. James was poised to go in after it. Then, a motor boat went roaring by and the shoe disappeared from our sites. Sigh.

The kids really enjoyed the ride over and we got to see a beautiful sun set to boot. Anyway, onto the birds. The pictures don't do justice to the experience. They were literally covering the sky, coming in from every direction, and circling the island. It was actually pretty eerie. Think The Birds.



Around the house

We have officially begun the countdown to school. Two weeks from today. And a certain kindergartner can't wait to get started. So, he has decided to get a jump on things. Here he sits at his new desk working on addition and subtraction. Which he has declared he will do every day until school starts. His new desk, by the way, was made by his Papa. The piece of wood on top came from our armoire. No, we didn't chop it up for firewood. It was a piece that pulled out for a keyboard, should you choose to use the armoire as a desk rather than an entertainment center. James and I have tried since the day we bought the thing to get that piece out so we had more space beneath the tv; we gave up. Timothy, however, managed to get it off track to the point that we couldn't get it back in! So, with the addition of four legs it has become Luke's desk.

Speaking of Timothy, the peculiar one. . . he has a strange fascination with walking around the house with his blanket over his head. He does this regularly.

Last week, after settling him in for a snack, I turned around to find him covered again. Honestly, I didn't put the blanket on him. This is all his doing. I wish I could get in his head sometimes.

Luke has been taking on the role of art teacher, desiring his brothers to enjoy drawing as much as he does.

Timothy doesn't care about coloring, he just wants to get his hands on that full box of crayons so he can dump them all out. That's what he is really good at - making a mess. He roams the house dumping out baskets, unloading my cane collection from it's holder, pulling books off shelves. As seen here. He had help with this. Wil was a willing accomplice. In fact, together they pushed the ottoman up against the bookshelf so Timothy could reach the normally out of reach books. They were very proud.

We haven't been outside much, what with the 100 degree temperatures and all. Ugh. Even this little guy has sought out a shady place in my dying zinnia's.

That's about all we have been up to.

Luke Logic

This morning I shared with Luke some plans we have for Friday night. An outing he is very excited about.

Luke: We only have three days before Friday, yay!

Me: We have four days Luke, today is Monday (9am), then we have T, W, and Th. As I counted the days on my fingers for him.

Luke: Mom, you don't count the day you are on! It's like checkers, you don't count the square you are on.

Me: Of course, what was I thinking. :)


I don't remember exactly when I started following the Cornish Family's adoption journey. I'm pretty sure it was sometime around November of 2007 when reports coming out of Eastern Europe told of the horrific conditions orphans with special needs live in. Shortly after that story I learned of Reece's Rainbow, a ministry dedicated to placing orphan's with Down syndrome, living in Eastern Europe, with their "forever family" before they turn five. Why five? Because that is when children with special needs are sent to institutions similar to those seen in this NY Times piece.

The Cornish family, already with two biological children, one with Down syndrome, felt led to adopt from Eastern Europe. To give a child, that might otherwise die, an opportunity to live. Through Reece's Rainbow they began their journey in October of last year. When I "met" this family through an online group I occasionally participate in,, they were well into the process and waiting to travel. You can read all about their journey here, it was full of surprises.

They came home with two precious children. Emma and Micah. This is Emma.
Emma is having heart surgery tomorrow. She has a very sick heart. Some of the specialist's that the Cornish family consulted didn't feel that Emma should have the surgery, they didn't believe she would survive it. But she won't survive without the surgery. Dr. Q, a surgeon at the Children's hospital in St. Petersburg, FL, believes differently and agreed to do the surgery. She has proven to be a fighter!

Dr. Q, by the way, is the same surgeon that performed Wil's surgery almost three years ago exactly. Emma is having her surgery tomorrow morning. Please pray for her. Pray for her strength, pray specifically for her ability to come off bypass, pray for Dr. Q, pray for her parents and siblings.

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