NACD Free Telephone Seminar on Down Syndrome

The National Association for Child Development is hosting a free telephone seminar on April 27, 2011 at 8pm (CST).

This is Part 2 of a seminar on Down syndrome. Part 1, which was done in March, was very successful and packed with information. It is available as a free podcast on iTunes (search for "NACD" on iTunes).

Topics to be covered include:

- Understanding hearing--why it is such a huge issue with Down Syndrome and how to address the problems
- Speech--how it is affected by hearing, structure, and function
- Looking toward our children's futures:
Self-help skills, chores, behavior, and on becoming responsible
Creating a target
NACD Foundation--creating a different model for our children's future

The Conference Call number is (712) 432-0075. (This is a long distance call. If you do not have long distance services on your phone, Skype is a recommended alternative.)
The Conference Code is 662415.

IMPORTANT TIP:
When entering the telephone seminar, hit *6 to mute your line to avoid sharing background noise with everyone on the call. To ask a question, hit *6 again to unmute. *6 allows you to toggle between mute and un-mute.


We will be listening in on the telephone seminar. Will you?

Everybody Loves Reece's Rainbow

Reece's Rainbow is the connection for orphans with Down syndrome all around the world to find forever families.

An American family. Possibly the forever family of a 4-year old boy with Down syndrome from Russia. His name is Kirill. Everything was looking good until the Russian judge ruled against their application. The basis: Kirill was "not socially adaptable due to his medical condition." The judge would not approve the adoption only because Kirill has Down syndrome, saying that "he was better off in an institution than in a home with a family." It is absolutely heartbreaking. Read Kirill's story.

Kirill's story has spread like wildfire. Actress Patricia Heaton (in the tv series Everybody Loves Raymond) is responding to Kirill's story by supporting Reece's Rainbow. Read her Reece's Rainbow note on facebook.
She is donating $1 for every Reece's Rainbow follower on Twitter up to $10K.

Please show your support and help raise funds and awareness for orphans with Down syndrome. Simply follow @ReecesRainbow on Twitter.

Non-invasive Test for Down Syndrome by 2013

A cheaper and quicker blood sampling method to test for Down syndrome is reportedly going to be available to pregnant women by 2013. I'm all for non-invasive testing that takes away the risk to the unborn child. But it seems like the risk to an unborn baby with Down syndrome increases - the risk of termination.

The general perspective about Down syndrome is relatively better today than it was 20 or more years ago. Unfortunately, despite the awareness generated over the past several years by organized groups, blogs, families, and self-advocates with Down syndrome, there is still a lot of work to do. Headlines like Down's syndrome test breakthrough 'on the horizon', New screening halves the number of children born with Down syndrome, and Non-invasive screening in early pregnancy reduces Down's births by 50 percent make it alarmingly apparent that society in general has not really changed their minds about Down syndrome.

I reshared a friend's status on my facebook wall yesterday (referring to the article Down's syndrome test breakthrough 'on the horizon'):

"He said...[this] will encourage more couples to take the test and therefore slowly eradicate the disease." The "disease" being Down syndrome. MY KID. Could they be any more obvious? I'm all for early detection if it means bringing babies into this world more safely; we knew ahead and I'm glad for that. But suggesting this as a means of eradicating my child and people like him is just sickening.

It's so sad.

If tested positive, why not encourage more proactive prenatal care and perhaps a form of targeted nutritional intervention (TNI) as the baby develops in utero instead of suggesting or encouraging termination? Is there scientific research about prenatal care for preventing or lessening the chances for heart defects and other common issues in newborns with DS, thus giving them a healthier start in life?

There is no cure for Down syndrome. But many individuals with Down syndrome are leading happy and productive lives. The general consensus among families and friends of people with Down syndrome is that people with DS bring out the best in us and give our lives more meaning. I agree 100%.

What's next? There is no cure for autism, cerebral palsy, and other conditions. If a non-invasive blood test to detect these in utero is developed, would it also be viewed as a means for eradicating fetuses diagnosed with such conditions?

Dancer With Down Syndrome

Another highly inspiring story this week is about Nicole Smith. She's more graceful than a swan on the ballroom dance floor and yes, she has Down syndrome. It makes me wonder what Matthew's passion will be.

Excerpts from the article:

Doctors told Diane and Mike Smith that their daughter would probably never walk, talk, read, or dance.

Nicole was six-years-old when her parents noticed her love for music, so they enrolled her in a dance class.

“I realized how talented she was right from the beginning and we got through so much material in her first few lessons that we started to work on shows almost right away,” says her instructor and partner Pabaka.

“It takes her twice as long and twice the effort to be able to do what she does and she pushes through all of that,” says Diane.

Read the full article and watch the video to be inspired.

Kindermusik Teacher with Down Syndrome

The latest inspiring news I have seen today is about a teacher in Columbia, South Carolina. Her name is Bryann Burgerss. She is 22 years old and has Down syndrome. If she were in our area, I want Matthew and Elizabeth to be in her Kindermusik class!

Excerpts from the article:

Something that many would see as a difficulty, she turned into an inspiration.

Bryann brings something invaluable to her students.

"I always tried hard, and I always did my best. No matter what happens, I just keep on going and dust myself off."

Bryann is proof that with hard work, and a positive attitude, you can do anything.

Read the full article and watch the short video and be inspired.

Accelerating Scientific Research For Down Syndrome

As a mom of two, I am heavily invested in my children's futures. I want both of them to be independent, productive contributors to society.

As a mom of a child with Down syndrome, I want just as many opportunities available to Matthew in his future as there would naturally be for Elizabeth. I want Matthew to be accepted and respected. And I want Matthew to have greater options in life than he might have otherwise.

I am always interested in new scientific research about Down syndrome. Three groups that actively Down syndrome medical and cognitive research are:
- Down Syndrome Research and Treatment Foundation (DSRTF)
- Global Down Syndrome Foundation
- Research Down Syndrome

The DSRTF has an ongoing campaign called plus15.

For every dollar donated to plus15 before midnight tonight, a donor will match 3 to 1. The plus15 campaign funds research at major research centers, including Johns Hopkins Medical Center, Stanford University, University of San Diego, and University of Arizona, into how to improve the memory, learning, and speech of people with Down syndrome by 15 percent.

Down Syndrome Achieves is another organization that is spearheading the drive for more Down syndrome research work and legislative action. Lisa at Living in the Light blogged about Down Syndrome Achieves in her entry "A New Era in Advocacy for Down Syndrome".

I listened to their eye-opening and very interesting web conference this evening. It was shocking (and very sad) to see the disparity in government funding for Down syndrome and other diagnoses. Basically, more funding for Down syndrome means a possible acceleration of scientific research and treatments to improve learning, cognition and communication. I'll share more details about it in a separate blog entry. Another web conference is scheduled on February 17, 2011.

It all sounds promising. I am hopeful. If the research translates to good options for improving learning, cognition, and communication, which in turn can lead to better opportunities and independence, then I am for it. Are you?

The Possibility of College with Down Syndrome

It was probably unheard of 20 or more years ago to send an individual with Down syndrome to college. With more supports in place, awareness and opportunities these days, I'm not surprised that some colleges have opened their doors to people with Down syndrome. In fact, I am elated that this opportunity for higher education exists for Matthew.

One of my sister-in-laws shared an online article with me recently - "More intellectually disabled youths go to college". It states "That growth is partly because of an increasing demand for higher education for these students and there are new federal funds for such programs." I hope the demand keeps up and the funds are not taken away by naysayers like Charlotte Allen, who is mentioned in the article. (Boo to you, Charlotte Allen!)

Googling "college down syndrome", I found:
Post-High School Options for People with Down Syndrome - list on the National Association for Down Syndrome (NADS) website.
ClemsonLIFE Program at Clemson University - designed for students with intellectual disabilities who desire a postsecondary experience on a college campus.
Think College - College options for people with intellectual disabilities.
Shepherds College - leading post-secondary educational program for individuals with intellectual disabilities.

I'm sure there are many other available programs. Please comment if you know of any more.

Matthew is 3 years old and just entering preschool. Who knows what his level of abilities will be when he's older? How interested will he be in school? But it is so nice to know that these doors to further education are unlocked and open. So, should Matthew graduate from high school and want to continue more formal education, he can! If he wants to work right after high school, he can too! I love thinking of possibilities.

As Buzz Lightyear in Toy Story says, "To infinity...and beyond!"

Sharing Our Gift From God

My aunt once told me that Matthew would touch and inspire many lives in his lifetime. She said this a few days after he was born when we were trying to comprehend how Down syndrome would affect his life and ours.

A few weeks ago, the features writer of our local newspaper contacted me interested in writing about my blog and Matthew. I was nervous and excited at the same time about the idea of being featured in the paper: nervous about answering questions and not knowing how the article was going to turn out and excited about this being an opportunity to raise awareness about Down syndrome in our community.

The article Sharing Her 'Gift from God' With the World was in the August 27-29, 2010 weekend paper. I was expecting a short article but was happily surprised with a full front page article in the features section. It is such a well-written and inspiring piece of work, as many people we meet in town and online have commented.

I love her perspective of my blog. I never thought of it like the way she put it, which is 'sharing my gift from God with the world'. It is what I'm doing though, just as fellow bloggers who have kids with Down syndrome are doing. There have been many others before me and there will be many others yet to be born into this world and into blogland.

It is one of the ways to advocate for our children with Down syndrome - showing how kids with Down syndrome make us smile, worry, cry and laugh, just like any other child would and showing how kids with Down syndrome learn, grow and develop, just as uniquely as any other child would.

It's a way to connect with other parents who are on a similar lifelong journey as us. It could be the source of inspiration and strength for a mother-to-be with a prenatal diagnosis of Down syndrome or for new parents of a child with Down syndrome.

It is one of the ways that Matthew will touch and inspire many lives, just as my aunt had known all along.

Failure to Diagnose Down Syndrome

The Herald Sun in Australia published "Two couples suing doctors for failing to diagnose Down Syndrome" today. This isn't the first time I've read something like this. There was a similar article in 2009 about a couple in Oregon suing their doctor for $14 million.

I don't want to judge BUT... It's sickening! Absurd! Selfish! The father says they treat their 4-year old daughter like gold. How contradictory! Can he look his daughter in the eye and say, We love you but but would've killed you had we been known that you weren't going to be "perfect"? It's maddening! Of course, they place blame on their doctor who failed to detect Down syndrome (Remember, any test to detect Down syndrome is not 100% accurate). Surely, SOMEONE is to blame when life throws a curve ball, right?

Here is the article in case the link to it doesn't work:

TWO Victorian couples are suing doctors for failing to diagnose Down Syndrome in their unborn babies, denying them the chance to terminate the pregnancies.

The couples are claiming unspecified damages for economic loss, continuing costs of care of the children, and "psychiatric injury".

Both say they would have aborted their pregnancies had they been told their children would be born with Down Syndrome.

In one case, parents of a girl born in July 2005 are suing the Royal Women's Hospital. The parents said an early indication of Down Syndrome was detected by ultrasound in the first trimester and a further test was recommended.

They went to the Royal Women's with the results of their initial ultrasound, and another was taken.

The doctor failed to detect Down Syndrome, the mother said.

"Had the presence of Down Syndrome been diagnosed at the time of the first trimester ultrasound and/or at the time of the second trimester ultrasound, a time frame which permitted the termination of the pregnancy, then the (mother) would have terminated the pregnancy," the statement of claim says.

The girl, 4, who now attends a specialist kindergarten, was born with heart, kidney and thyroid problems, can't walk, and needs help feeding, her father said.

"Don't get us wrong: we love our daughter. She's part of our family, and we treat her like gold," he said.

Maurice Blackburn lawyer Kathryn Booth said she was investigating whether appropriate ante-natal management and testing, including an amniocentesis, should have been offered and performed.

In 2003 the High Court ruled parents could sue in the event of a wrongful birth, she said.

New South Wales, South Australia and Tasmania have legislated against such claims. But in Victoria, people can sue for compensation for the continuing costs of raising a child to the age of 18, where the child was born as a result of negligent care, she said.

The Royal Women's is yet to file a defence.

In the second case, Western Health is being sued over a birth at Sunshine Hospital in December 2007.

The parents allege a failure to "exercise reasonable care" of the mother, "advise (her) in relation to the risks of Down syndrome given her age" and "provide (her) with the option of ante-natal screening.

"In the event that Down Syndrome had been detected, (she) would have elected to undergo a termination of her pregnancy," their statement of claim says.

The parents claim to have suffered "depression, shock and anxiety" and "pain and suffering during pregnancy and delivery".

In its defence, Western Health and a doctor involved in the birth deny any wrongdoing.

The hospital argues the family has failed to show it suffered a "significant injury" as defined by law.

Unless settlement agreements are reached, civil trials are expected to go ahead.

Reactions to the R-Word

The recent debacle about the r-word has stirred much controversy and many reactions including this open letter to Sarah Palin posted by the Oz Squad, an elite group of active, compassionate bloggers dedicated to educating the public about Down syndrome. Please read the letter and "sign" it by leaving a comment on the post. Once there are 100 signatures, the Oz Squad will contact Sarah Palin and ask her to visit the Oz Squad blog to read the letter and the comments. Why a letter to Sarah Palin? Whether you like her or not, she is going to be in the spotlight speaking up about Down syndrome more often than not. We hope that by doing this, she will be better equipped to stand up for our loved ones.

Another person that has always openly spoken out about ending the r-word is John C. McGinley. He is an actor and a spokesperson for the National Down Syndrome Society. His son, Max, has Down syndrome.

I would like to share his recent contribution to The Huffington Post.

N*ggers, K*kes, F*ggots, C*nts, W*ps and the R-word

By John C. McGinley
Actor and Spokesperson for the National Down Syndrome Society
Posted: February 10, 2010 04:10 AM

Editors Note: The following piece contains strong language, used to explain the impact of certain words in our society.

Recently, the words “Retard” and “Retarded” have become political volleyballs. Disingenuous figures from across the ideological spectrum have been lining up to take their shot at smashing the R-word down our throats. And no matter what party is being “represented” or what Constitutional Right is being exercised, whose agenda is being advanced? The people who have been hurling the R-word about have failed to realize that their language is the stuff of cowards! Only spineless bullies pick on those who cannot defend themselves. And by using the R-word without an once of compassion or even the least bit of sensitivity towards those who are damaged by their hate-speak, these prominent figures have truly become national shames. And it stinks!

People with Special Needs — and their families — do not need any help to make their lives “a little more challenging.” They already have plenty on their plate, thank you very much. And the last thing that any Special Needs family wants is to be assaulted with the R-word. It is already an uphill battle!

Dignity is inherent to the human condition. An individual’s dignity is not only an entitlement. It is a fundamental quality that distinguishes each of us and lends an informed significance to everything that we do. And any time a person’s dignity is stomped on, it is wrong! The R-word robs people with Special Needs of their dignity. And it is time to stop.

What if from now on, we changed the way we use the words “retard” and “retarded?”

It hardly seems like the largest of sacrifices. Not when you consider the changes in language that we have already so willingly elected to integrate into (or expunge from) our vernacular. We no longer use the words “N*gger” or “k*ke” or “f*ggot” or “c*nt.” Why would we? Why on earth would we? Those are all words that hurt. Those are all racial and ethnic slurs and epithets that perpetuate negative stigmas. They are painful. And that is not okay. It is wrong to pain people with our language. Especially when we have already been made aware of our oral transgressions’ impact.

Make no mistake about it: words do hurt! And when we pepper our speech with “retard” and “retarded,” we are spreading hurt. So stop it. Stop saying “retard” and “retarded.” There is no acceptable occasion to lace our dialogue with words like “n*gger,” or “k*ke” or “f*ggot” or “c*nt.” There is no longer any acceptable occasion to lace our dialogue with the words “retard” and “retarded.” Without fail, those are all word that hurt. They straight up are. So, cut it out. Stop using the R-word.

The millions of people with Special Needs (around the planet), who are on the receiving end of this hate speak, are genetically designed to love unconditionally. These “retards” are NEVER going to return our vitriol. Ever! So, what could possibly be the up-side of continuing to use the R-word in our daily discourse?

Only cowards pick on those who cannot defend themselves. By using the R-word we are inadvertently, sadly and sometimes directly hurting a group of people who never did anything wrong to any of us. Not even close.

There is an easy way to put this initiative into motion. Please join our effort to “Spread the Word to End the Word.” Go to www.r-word.org.

Related posts:
End the R-Word

Big Brother Matthew

That's right! Matthew is going to be a big brother.


I found out the day before Bill's birthday and told him the news on his birthday. We decided to hold off on telling friends and family for a few weeks. We did so with this shirt. He has a white short-sleeved shirt too with the same wording. We had fun using this shirt to share the news with family and friends. Matthew - the messenger.

I was tempted to have him wear it about a month ago when we met up with Jack and Julie, Braska, Kinlee, and RK, and Henry and Heidi. But I didn't. During our fun playdate, I almost said something when Heidi said, "Henry is ready for a sibling. Do you think Matthew is ready for a sibling?" I was smiling on the inside and just nodded in agreement.

I wanted to wait until I was further along and had seen my doctor. I saw my doctor today and I'm going back for an ultrasound in a few days. I'm about 9 or 10 weeks along. Big brother Matthew doesn't realize what this means for him yet though. He will - in time.


In the photo, Matthew is in the red/white striped shirt, Henry is in the light blue shirt with the red stripe, Braska is the only one with the ponytail, Jack is in a white shirt right in the middle, and Kinlee, Braska's little sister, is in the light pink shirt.