This is a scientific look at Down syndrome and new information derived from examining stem cells. In spite of those areas that may assault my sensibilities, I felt it was important to include this video. Be aware that “people first” language is also not a big part of this clip.

UPDATE: Updated to add the following which appears on the YouTube page for this clip:

Scientists have known for some time that Down Syndrome, the most common chromosomal abnormality, is caused by an additional chromosome #21. However, new fetal stem cell research is demonstrating that it is not only the presence of this additional chromosome, but also what the genes are missing, that may impede the development of a Down Syndrome brain.

http://www.pubinfo.vcu.edu/secretsofthesequence

Link the the study guide used for this lesson intended for high school students (9th through 12th grades).

Russell has just competed his first year of high school, and on the whole I’m satisfied, although I would like to see them make a bit more effort toward inclusive education. He spent 10 years at an elementary school in which he was included in a regular classroom. Only occasionally was he pulled out for extra help, and that was after we decided not to have him take French. So for the last few years he used that time period for extra reading help. His experience was so positive, and he had wonderful peer support.

Those same peers have also been great so far in high school, eating lunch with him, and helping him out should he be in their class, but high school is really not set up the same way. Our board has a philosophy of inclusion, and until a few years ago all students were in a regular classroom. However, parents started pulling kids out of the board and putting them elsewhere, perhaps because they didn’t get the support they needed to be successful. The board created a special education program, and now kids with special educational needs attend regular classes half-time and get their core learning (reading, math, and life skills) in a segregated (they call it congregated) setting.

It’s not bad, but I had to insist that Russell be moved to the next level, because the initial placement had him bored to tears. Just because he pretends he can’t read doesn’t mean he can’t. Ultimately this is where my frustration comes in. In the regular classrooms the teachers think he’s amazing. He’s cooperative, independent, and eager to learn. In the special ed classrooms he’s less of all of those things. They don’t see the connection, but I sure do. I’ve also had to fight them a bit for him to be independent. They want to mother him and babysit him, and he hates it. He catches the bus to and from school, and hasn’t got lost yet. Some days he stays late to lift weights and I pick him up, but next year we’re going to teach him how to catch the later bus, which doesn’t go directly to our house. I was late one day and found him starting to walk home. I had a bit of a negative reaction (ok, maybe not just a bit), but after I calmed down I realized that he should also know that route.

We’re all ready for the summer here with drama and basketball camps and some time just kicking around home. Russell is excited to be going into grade 10 and taking science, which was his first choice when picking subjects.

Have a great summer, everyone! This picture attached is of Russell’s ball hockey team on winning the consolation final of their league.

Hi everyone. This is my first post so I’ll do an introduction of our family and then I want to share some recent successes. My name is Clare, I live in southwestern Ontario, Canada and I have four kids. Bobby is 19, Mary 16, Russell will soon turn 15, and Kathleen is 11. Russell has translocation Down syndrome. All my kids provide me with a lot of joy, but because I am a single mom, there are challenges too.
I’m passionate about building a good life for Russell.

For me that means educational and social inclusion as well as building friendships for him and for me through our local and national Down syndrome associations.

Recently we all attended the Canadian Down Syndrome Society’s annual conference in Ottawa. We had such a good time. All the kids were well behaved, and the dinner and dance that ended off the weekend was a blast. Russell never sat down once—he spent the whole time on the dance floor. Here’s a picture of the five of us, something you don’t see very often any more.

Also recently, Russell attended a Special Olympics track meet through his school. Although he has always participated in “regular” sports teams, he’s never the strongest player on those teams and he works darn hard to keep up. Special Olympics gives him a chance to shine, and that he did. He came home with three ribbons and a big smile on his face. It was a really, really hot day, but once he got that first ribbon he just wanted more.

I look forward to reading all the other bloggers’ posts and I thank you for sticking with me to the end of this one.

Sadly, I’m not brave enough to post videos of my son with Down syndrome on YouTube where many troglodytic idiots feel the need to uplift themselves by putting down people with Down syndrome. Thankfully there are others who will brave the ignorant comments so our kids with Down syndrome can be represented and shown to be just like any other kid on the block.

I think this made me laugh twice as much because my own kids have gone through (and still do) antics just to make my son with Down syndrome laugh. But then again, they do that with their youngest sister too. In other words, the whole family unit functions just like any other family unit who may not have the pleasure of having a child with Down syndrome.

Let me say that I am Pro-Life and I also happen to be Roman Catholic. It’s funny how people assume that is why I allowed my son with Down syndrome to be born. The truth is, he was my son from the start and once I knew he existed, “options” ceased to exist. I was 40 when I became pregnant and would be 41 at the time of his birth and I knew the odds. We did not have an amnio or CVS (chorionic villus sampling). I did not even have those quirky blood tests you hear so many women freak out about (I didn’t even have the blood tests with my previous pregnancies). This wasn’t a testament to my pro-life commitment, but instead it was my commitment to the child I already knew.

So when I saw this article today about Sarah Palin,

Alaska Gov. Sarah Palin isn’t just a pro-life politician. She recently proved she’s pro-life by personal example. In an age when many parents receive the news that they’re carrying a baby with Down syndrome and then “terminate” the pregnancy,” Gov. Palin gave birth to a son with Down syndrome and announced her delight at God’s blessing.

I read it wondering if she actually felt as I did and not as a magnanimous being living out her pro-life stance for the public. While I’m glad the author pointed out the main stream media’s failure to really cover the story of Sarah Palin and the birth of her son, Trig; I can’t help but be a little bothered that the birth of Trig is being made a symbol of Pro-Life.

You would think I’d be happy considering my stance and my status as a mother of a child with Down syndrome, but placing our kids in that position as a symbol also places them in a position to be held in utter contempt by those supporting pro-choice ideals. Eight out of ten babies prenatally diagnosed with Down syndrome are aborted, and my fear is that contempt could allow that number to rise.

I would rather my son be a symbol of strength and perseverance. It does sound a bit cliche, however, he has worked so hard for every goal reached. In a society that honors great gain for little effort, I prefer he be a known because of the things he does, not just for “being.” That’s what I want for all of my children. Let the Paris Hiltons of the world be known for just existing.

Back to the article.

The national news rarely covers much from Alaska, but this story also has a heartwarming pro-life angle, which offers a political reason for the media to go whistling past it.

Sad but true.

Those of us in the Down syndrome community probably didn’t even notice the lack of coverage via the national media. We scrambled on our online forums and mail-lists linking to every remote article and photograph we could find. We were excited for the Palin family while at the same time recalling the flood of roller coaster emotions that immediately follow the birth of a child with Down syndrome. To most of the media, the birth of Trig was an issue. To those who don’t understand Down syndrome, it was a time to express sympathy. To those pro-choice advocates who saw his birth as a symbol, it was a time to express contempt (read the comment sections of the few articles that came out after his birth). To those of us in the Down syndrome community, Trig’s birth was a time to express joy at the birth of a beautiful child.

Not that donating is ever painful, but this is an easy way to donate to Parker’s medical care and doesn’t even require your own funds. You simply open a Revolution Money Exchange Account using the button below and $10 will be deposited into my RME account which will in turn be donated on your behalf to Parker’s medical costs. If you go one step further and verify your own bank account, you will receive an extra $25 in your own RME account which you can then keep or feel free to forward on to help with Parker’s costs.

Important! If for any reason you are not comfortable signing up through Blogging Down, go directly to Praying for Parker and sign up using the button there.

The article Who should doctors let die in a pandemic is making the rounds amongst Down syndrome lists.

CHICAGO - Doctors know some patients needing lifesaving care won’t get it in a flu pandemic or other disaster. The gut-wrenching dilemma will be deciding who to let die.

Now, an influential group of physicians has drafted a grimly specific list of recommendations for which patients wouldn’t be treated. They include the very elderly, seriously hurt trauma victims, severely burned patients and those with severe dementia.

The suggested list was compiled by a task force whose members come from prestigious universities, medical groups, the military and government agencies. They include the Department of Homeland Security, the Centers for Disease Control and Prevention and the Department of Health and Human Services.

Where do our kids with Down syndrome fit in this plan?

To prepare, hospitals should designate a triage team with the Godlike task of deciding who will and who won’t get lifesaving care, the task force wrote. Those out of luck are the people at high risk of death and a slim chance of long-term survival. But the recommendations get much more specific, and include:

• People older than 85
• Those with severe trauma, which could include critical injuries from car crashes and shootings.
• Severely burned patients older than 60.
• Those with severe mental impairment, which could include advanced Alzheimer’s disease.
• Those with a severe chronic disease, such as advanced heart failure, lung disease or poorly controlled diabetes.

Dr. Kevin Yeskey, director of the preparedness and emergency operations office at the Department of Health and Human Services, was on the task force. He said the report would be among many the agency reviews as part of preparedness efforts.

(Emphasis mine.)

Considering our kids are often thought of as being severely mentally impaired by others and considering our kids have a higher chance of early onset Alzheimer disease, we must be ever vigilant and ever prepared on behalf of our children.

I take this commentary from Not Dead Yet News & Commentary to heart (Hat tip to KathyR):

Real ethical concerns indeed. These “lifeboat rejects” are already some of the people likely to draw the short straw in what we call a healthcare system. Has anyone bothered to ask how this triage list will affect attitudes toward individuals now deemed as “rejects” now? Hospitals will now have policies listing these individuals as unworthy of lifesaving efforts in an emergency. Will that affect the way medical providers see them right now?

It’s not as though individuals on this list are highly valued or respected in the system as it is.

I have many friends who would fit on this list. I have two pieces of advice for them:

1. Be afraid. Be very afraid.
2. Once you’ve gotten that out of your system, start organizing and raising a stink about it.

Oh where does that lifeboat come in?

I know my stance on Universal Health Care is not the most popular amongst other parents having children with Down syndrome, but I see this Lifeboat policy tying into the eventual limited resources to be had should Universal Health Care be adopted. We’re already told there are unwritten (sometimes written) rules that our children will not be transplant candidates, and I can only imagine that under UHC, more decisions will be taken out of our hands.

When I had my other children, I didn’t have visions of any of them getting married, going to college, or becoming president. They were babies in my arms, reaching toddlers, defiant preschoolers, and never the visualization of the person they would become in the future.

It was immediately different when Josh was born. He was born early on a Sunday morning and most of that day was spent trying to get him away from whomever came to whisk him off for the testing of the moment. Monday was different. That was the day I started seeing the future and I cried because it was scary to me.

When I was in high school I did volunteer work at a summer day camp for children with special needs. I would go with my friend, Ellen, who was much more serious about it because she planned to become a Special Education Teacher. I went because it seemed like a good thing to do. Little did I know those days would come back in a flood of tears in a hospital bed in Ohio in 2002.

Yes, Monday night WAS different. I kept seeing two of the young men from my group at that summer camp who had Down syndrome - Jerry and Paul. I could see Jerry flapping his hands and hugging people. I could hear Paul saying his favorite food was “skekie” (spaghetti). Paul was thinner than Jerry and had darker hair but they both had crew cuts. My mind tapped into a file in my memory and retrieved it in pristine condition. The two young men that had been a source of smiles when I was a kid now scared me. The crystal ball was activated.

That was and continues to be the hardest part (for me) of having a child with Down syndrome. It was also the first time I really understood what it meant to take it “one day at a time.” I had to learn to live in the moment with Josh as much as I did with my other children.

And yet, there has to be a balance between living today and preparing for tomorrow for Josh. We’re in the process now of setting up a Special Needs Trust to help care for him financially in the future. Then there are articles like this reminding me that I need to nurture my other children so they will want to participate in Josh’s future.

If only the crystal ball was clearer.

A greater number of links to articles about Special Olympics have been coming through the Down syndrome mail-lists lately and the stories are all well-worth reading. So I decided to do a Google news search to see what else could be found on the subject. Here are a few highlights, but click on the links to become further inspired.

David Macklen hustled across the finish line and proudly claimed a silver medal Saturday at the Special Olympics in Columbia.

Then Macklen’s parents hugged him and kissed his cheek.

“I liked seeing the light in his eyes when he got out there and achieved that,’’ said his mom, Kay Macklen of Myrtle Beach. “Davey is our miracle.’’

As with other athletes at the Special Olympics, young Macklen’s achievement was more than how he finished a foot race.

It was about competition.

The 14-year-old Macklen, who has Down syndrome, had scampered along the track to an ovation from hundreds. He smiled happily as coaches, volunteers and fellow athletes encouraged him to finish. Every other athlete, regardless of how he or she fared, got the same treatment.

It’s part of the reason for Special Olympics. Begun 40 years ago in Chicago, Special Olympics is a way to help people with handicaps get involved with sports and gain a sense of achievement.

Special Olympics has spread across the world since the first games in 1968. Today, 2.5 million people are involved, including about 15,000 in South Carolina. Many parts of the state hold regional events. This year’s summer games in Columbia attracted about 800 athletes to participate in track and field, swimming, bowling, softball, and gymnastics.

Low muscle tone seems to be the crux of many of the obstacles our children with Down syndrome must overcome. From birth, we whisk our babies off to Physical, Occupational, and Speech Therapy sessions in an effort to allow our children to master basic skills. Perhaps this extra effort has put the heart of a champion in each of our children.:

Nick, 24, has Down syndrome. Coached by his dad, he’s training to compete in powerlifting at Special Olympics Missouri’s State Summer Games. The event for people with mental disabilities will be held for the first time in Springfield, May 28 through 30 at Missouri State and Drury universities.

Five feet tall and weighing 132 pounds, Nick is a three-time gold medalist in his weight class. His personal best is dead weightlifting 255 pounds and bench pressing 160.

His training routine rarely varies. After a weightlifting warmup and short rest time, he growls to psyche himself up for heavier loads. Finally gripping the bar, he strains and lifts, gritting his teeth and tipping back his head in focused concentration.

Heads turn when he roars loudly while lowering the more-than-200-pound weights to the floor.

Nick’s strength is atypical for people with Down syndrome, as most are prone to weight gain and low muscle tone, his parents say. But it didn’t happen overnight.

When he started training six years ago, David says, Nick could hardly lift the bar alone. He’s shown incredible determination — urging his dad to the gym even when David might be tempted with a night off.

If for no other reason, click on the last link to see the photos of how beautifully muscular Nick has become from his training. It’s surprising the expectations we can learn to have. My son is only five and everyday I LEARN to have new expectations.

The weight lifting stories are more intriguing to me - and again, more photos:

Colten Gibbs is ready to flex his muscles.

For the past six months, the 19-year-old Prescott man has worked out on weights with the goal of dead-lifting 175 pounds and bench-pressing 160 pounds. An athlete with Down Syndrome, he’s excited to compete in his first Special Olympics on Saturday in Prescott Valley.

Asked if he’s nervous, Gibbs quickly responded with a laugh, “Just a little, yeah. I’ll be OK.”

Finishing off with just a few more links:

Link

Link

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Blogging Down will become a repository of posts from a variety of people who have Down syndrome or from people who love someone with Down syndrome. Being a contributing author doesn’t require a regular commitment, just contribute when the inspiration hits you. You can also share an excerpt here of an article from your own blog and we’ll link back to the complete article.

Video contributions are very welcome!

Contact me at BloggingDown@gmail.com for more information!