Celebrate a new holiday -- Disability Awareness Month

Here's a great article written by Jeff Huffman who happens to be Nash's Daddy and you can go visit his Mommy's blog at Mauzy's Musings.

Jeff Huffman column: Celebrate a new holiday -- Disability Awareness Month

Help, employ those with disabilities; making a friend easy as saying 'hi.'

Written by Jeff Huffman
March 23, 2007

When you think of March holidays, what do you think about? St. Patrick's Day? Spring break? Dr. Seuss' birthday? (It's true, Dr. Seuss' birthday is being celebrated this week at Goddard School, where our son attends after morning kindergarten at White River Elementary.) How about that Uranus was discovered on March 13, 1781? (OK, my wife Jan found that one.) But did you also know that March is Disability Awareness Month? And this celebration is one where you not only should mark your calendars, but you should also take action.

If someone had asked me about Disability Awareness Month six years ago I would've told them I'd never heard of it. Now that I am involved in disability awareness, both professionally and personally, I realize, it's about "abilities" not "disabilities."


Six years ago our journey commenced when our son Nash was born with Down syndrome. I sought out every bit of information I could and realized that what textbooks, brochures and Web sites left out were the personal connections -- the real people, the ones that experience disabilities daily themselves or through a family member. These experiences molded my perception. People who don't walk the walk and live the everyday life don't know, and it's up to those that do to let others know the needs, the wants, the possibilities, the desires.

Today, individuals with intellectual and physical disabilities are open to a world of possibilities. That's partly due to the Individuals with Disabilities Education Act that has given children with disabilities the right to attend public school since 1975, along with the Americans with Disabilities Act which gives individuals with disabilities the legal right to pursue life, liberty and the pursuit of happiness, including employment.

So it might surprise you that 80 percent of individuals with disabilities are underemployed or unemployed. As a country, a state and a community we have to fix this final roadblock. How can we do this?

• Transportation is the No. 1 roadblock to employment, so continue to support Hamilton County's expansion of public transportation.

• Encourage everyone that your family does business with to hire individuals with disabilities -- 89 percent of Americans prefer to do business with organizations that employ people with disabilities, according to a Gallup Poll.

• Support school systems' efforts to accomplish great things for students with disabilities by supporting inclusion in classrooms and improving the transition process from school to work.

Those are just three easy ways that we can begin to celebrate Hamilton County's first "Annual Ability Awareness Month." The easiest way to start is do what I try to do everyday: When I meet a new friend who happens to have a disability I just smile and say, "Hi. . . . "

Jeff Huffman is president and chief executive officer of Janus Developmental Services.

World Down Syndrome Day!

As many of the other parents that have children with Down syndrome have posted, today is World Down Syndrome Day. March is the 3rd month of the year and today's date is the 21st and since Trisomy 21 is a 3rd 21st chromosome, today makes the perfect day to celebrate Down syndrome awareness!!!

Please take a minute today to try and educate someone new on some the misconceptions about Down syndrome. Heck, show them a picture of Joey... does he look like he's suffering or a burden? Heck no!!!! He's perfect!! Also, if you've not read my story about when we learned that Joey has Down syndrome, please read it.

Also, a great article on WDSD, Disability must be valued, written by Jenny Bockerstette.

For Better Or Worse

This was posted today on DownSyn and I just wanted to share it with everyone. I didn't know until today that the comic strip had a character with special needs. It's nice to know that the author is helping to promote awareness in the way she is.

Also, check out Shannon's character bio here.


If the comic print is too small, click on the actual comic for a larger version.

A couple articles to start off the week!

Written by James Burger, "Man with Down syndrome opens his own retail shop" Coby Short opens his own gift shop at Bakersfield Heart Hospital in California.

Another great story, this one written by Karen Meyer, "Couple With Down Syndrome Takes Up Ballroom Dancing". Blake Peacock and his girlfriend, Carly Ziesemer have been taking dance lessons and MAN are they good! They're a heck of a lot better than I can dance!

I love stories like these. Be sure to check out the videos with each story.

Busy, busy weekend!

Well I started off this morning driving a hour out to the Navy Base at Groton to pick up my friend for the weekend. He's being transferred next week to Virginia so this will be our last time with him for quite some time. Anyways, we got back to our apartment at 12:00 only to have to get Joey ready to go to his birthday party at my in-laws house at 1:00. So off to Grandma & Grandpa's house we went. Joey had a blast! Lots of great gifts and we even let Joey have a piece of cake. Of coarse he didn't really eat any, he just played in it and got REALLY messy. He tasted the icing a little and I don't think he was too crazy about it. Kinda surprised me... and of coarse I left my camera over at my in-laws house so I will have to post pictures and video later when I can get them uploaded onto my computer.

Tomorrow we're going to the New Haven St. Patrick's Day Parade, I'm very excited about it. I didn't get to go last year, it was my baby shower and I was in no condition to stand outside at a parade (I went into labor the next day). Well, I guess that's it for now, I will hopefully post pictures tomorrow night!

Oh yes, also, here's a great find. "They'll Do It Themselves" written by Michael Winerip. It's the cover story for tomorrow NY Times Connecticut Section. Way to go guys!!!

Lifeguard article

This article was posted on the CDSC's message board and is about a lifeguard named Lisa Ellis who works at a YMCA here in Connecticut and who just happens to have a little something extra. Written by Brian Pounds.

Barnes & Nobles tonight!

Well tonight is our local Barnes & Nobles story time from 7-8pm. A young man named Sean will be reading a couple of his favorite stories and Melissa Riggio's article. There was a news segment on WTNH last weekend to promote this activity (be sure to click on the blue box below the title to see the video). It'll be nice to see other CDSC members tonight! I haven't seen many of them since our convention in November!

Another Use For Viagra

I was just doing my usual search of news articles on Down syndrome when I came across this one about a doctor at the Children's Hospital in Columbus, Ohio, who used viagra on one of his patients who has down syndrome and a heart defect. He needed a way to dilate her blood vessels and it worked. They've actually noticed a difference in the little girl's health. Check out this article written by Andrea Cambern. Even though Joey doesn't have any major heart problems, I still found this an interesting article.

A tearjerker!

This one brought tears of joy to my eyes... Selena Waters, a 19 year old senior at Abington Heights in PA helped to bring her girls basketball team to victory. A great article written by Marty Myers, On top of the world. Be sure to watch the video!

Golly, What DID Jon, Joey and every other person with Down syndrome do?

Many of us have been posting this article, but it's worth posting again!

Will: Golly, What did Jon Do?
Written by George F. Will

What did Jon Will and the more than 350,000 American citizens like him do to tick off the American College of Obstetricians and Gynecologists? It seems to want to help eliminate from America almost all of a category of citizens, a category that includes Jon.

Born in 1972, Jon has Down syndrome. That is a congenital condition resulting from a chromosomal defect that causes varying degrees of mental retardation and some physical abnormalities, such as low muscle tone, small stature, a single crease across the center of the palms, flatness of the back of the head and an upward slant to the eyes (when Jon was born, Down syndrome people were still commonly called Mongoloids). There also is increased risk of congenital heart defects, childhood leukemia and Alzheimer's disease. Down syndrome, although not common, is among the most common congenital anomalies—47.9 per 100,000 births (compared with 77.7 with cleft lips or palates, which also can be diagnosed in utero, and which sometimes result in abortions).

As women age, their risk of having a Down syndrome baby increases. It has become standard practice for women older than 35 years old to be offered genetic counseling and diagnostic testing. But because of the higher fertility rates of women under 35, such women have 80 percent of Down syndrome babies. So new ACOG guidelines recommend that all pregnant women, regardless of age, be offered such counseling and testing.
For the rest of the article, click here.

George Will, a fellow parent of a child with Down syndrome wrote a wonderful article in Newsweek this week. It truly does seem that the American College of Obstetricians and Gynecologists wants to eliminate people with Down syndrome at the rate they are going! 85-90% of prenatal diagnosis of Down syndrome result in abortion. If doctors would give more positive information rather than all the negatives, this percentage would go down! What doctors fail to tell you is that people with Down syndrome live full and wonderful lives! People with Down syndrome do not suffer because they have Down syndrome. Many graduate from high school, go to college, live on their own and heck are even getting married! What about the waiting lists of families waiting to adopt a child with Down syndrome? Some people just don't get it...

Like I've said many times already doctors need to focus on the positives and less of the negatives. Don't just offer abortions, offer information on local Down syndrome groups so that soon to be parents could meet families with children that have Down syndrome so they could see the positives.

I had a prenatal diagnosis but I chose life. I'm only 25 years old but Joey had some markers of possibly having Down syndrome during an ultrasound and I wanted to know for sure so me and my family could educate ourselves and be prepared for Joey's arrival. And you know what, I wouldn't have him ANY OTHER WAY! He's perfect just like he is, extra chromosomes and all!

another article

This article was posted on DownSyn and I just wanted to share it with those of you who might not have read it yet. It's written by a doctor and about prenatal testing and is actually worth reading! Steve Calvin: OK to test for Down syndrome? It's complex.

Dental info

I was doing my daily search of DownSyn last night when I came across this article. It's from the Nation Institute of Dental and Craniofacial Research and it's about practical oral care for people with down syndrome. It has some pretty interesting information for anyone who's not read it yet or that might be interested in it.

News video

This link was just emailed to me via the Connecticut Down Syndrome Congress's list serve and it's a news video out of Manhattan from WNBC about the NDSS and a family in NYC.

25%!!!!!!!!

I was doing my usual online search of various articles on Down syndrome when I came across this one today. It's not the full text but you'll get the point. It's from the OB GYN news and the statistic is awful! Only 25% of women with prenatal diagnosis say no to abortion! Only 25%! There are so many families out there who would LOVE to adopt, why abort?! I had heard before that around 80% of babies with trisomy 21 were aborted but I had never seen it in writing and to do so hurts. Gaaaaaaa!!!!!!

Since I'm on a rant about abortion, I just found another article and the only thing I have to say is, you go girl! "Pro-Life Nurse's Refusal to Do Abortions Changes Chicago Hospital Policy" by Steven Ertelt. A nurse in Chicago refused to assist in the abortion of a 22 week old fetus with trisomy 21 and her decision helped other medical workers at the hospital who didn't know that they had a choice to participate or not.

Light A Candle

This was emailed to me today and I wanted to share it with everyone out there in blogger land too...

Today, Bristol-Myers Squibb, the pharmaceutical monolith that charges nearly $1,000 for a 30-day supply of one of its HIV/AIDS medications, is donating $1 to the National AIDS Fund for each person who simply visits their website and "virtually lights a candle." The tally is over 1,000,000 now.

Please, please take a minute to "light a candle", www.lighttounite.org.

This really will take just a second!! Please forward this on to other friends!

12 Days of Christmas

Since there's only 12 days until Christmas (well Christmas Eve), I figured I would post an article I found online. It's about the Origin of the 12 days of Christmas. Very interesting!

Just wanted to share a local newspaper article about Chris Burke being at our convention yesterday.Burke inspires youngsters, parents through songs written by Joseph Wenzel IV

Also, there was an article in the New York Times titled A Dream Not Denied
‘Just a Normal Girl’ written by Leslie Kaufman, about a young lady that has down syndrome that is attending Becker College in Massachusetts.

I was just doing my usual google search of news with the keywords with Down Syndrome and I came across this story about a young man named Tyler from Apple Valley, Minnesota, who has Down syndrome and is his high school football team's student manager. "Student manager with Down syndrome inspires football team" written by Rick Shefchik.

I just wanted to share an article I just came across featured on the NADS website called If People With Down Syndrome Ruled The World written by Dennis McGuire, PhD.

Parent's Magazine October 2006

Parent's Magazine is has an article in October's issue featuring 3 families that have children with Down syndrome. It's called "Exceptional Children, Forget everything you know about Down syndrome. We asked three moms to talk frankly about the joys and challenges of raising their amazing children- and what they have to say will surprise you", written by Brooke Lea Foster. The article was a nice change compared to the articles we usually read about all the negatives.