A call for photos of Mom's & their kids with Down syndrome

Barbara Curtis from Mommy Life is putting together a web album of mothers and their children with Down syndrome as her Mother's Day project for this year. If you would like to participate, go visit her blog for more details.

Genetics visit last week

I went in last week for my first trimester risk assessment ultrasound and my prenatal lab work at Yale's genetic's department. I told them up front no other testing, no amnio or CVS. Anyways, the blood work came back fine with no elevation in my blood levels for Trisomy 21 or 18. My ultrasound showed that the baby has a thicker nucual thickening around its neck. Average is 3.0mm, my baby's is 3.1mm. When I was pregnant with Joey's his was almost double that that plus no nasal bone is what first made them suspect Down syndrome. His nucual thickening was severe enough to be classified as a Cystic Hygroma, but we were fortunate that it dissolved by the time he was born. This baby has a nasal bone. After ultrasound tech was finished, he went and got the doctor to take a look. Of course, the doctor saw that this baby's nucual thickening is a little abnormal. I was a little mad when he said, "I'm sorry", like he was sorry he was giving me bad news or something. I'm not worried what so ever, if this baby has Down syndrome too then God chose us to have another children with an extra chromosome, so what! I'd feel blessed to have another child with Down syndrome. Neither of us are T-21 carriers and the odd's of this child having T-21 is 1 in 45. The only reason for the odds being what they are is due to nucual thickening being what it was. Without the nucual thickening, the odd's were 1 in 100. I guess more than anything I'm mad at the doctor for saying "I'm sorry", because I'm NOT sorry, I'm happy! I'm 13 weeks pregnant and the baby is healthy. It has a nice strong heartbeat and has 2 arms and 2 legs. What more could a parent want?!

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!!!

The R Word DOES hurt

Katie Couric spoke out tonight during her notebook session of the news about using offensive words. Still to this day, I hear friends and family use the R word and don't even realize what they're saying. Like many other parents who read my blog, to me and them, it hurts when we hear it. I admit, before Joey was born, I was one who even used the R word occasionally and it haunts me everyday.

Also, this week, many other blogs have had this speech posted but since I'm on the subject, I too am posting it. It is written by a young man in high school named Soeren Palumbo who has a sister with special needs.

"I want to tell you a quick story before I start. I was walking through hallways, not minding my own business, listening to the conversations around me. As I passed the front door on my way to my English classroom, I heard the dialogue between two friends nearby. For reasons of privacy, I would rather not give away their race or gender. So the one girl leans to the other, pointing to the back of a young man washing the glass panes of the front door, and says, "Oh my gaw! I think it is so cute that our school brings in the black kids from around the district to wash our windows!" The other girl looked up, widened her slanted Asian eyes and called to the window washer, easily loud enough for him to hear, "Hey, Negro! You missed a spot!" The young man did not turn around. The first girl smiled a bland smile that all white girls - hell, all white people - have and walked on. A group of Mexicans stood by and laughed that high pitch laugh that all of them have.So now it's your turn. What do you think the black window washer did?

What would you do in that situation? Do you think he turned and calmly explained the fallacies of racism and showed the girls the error of their way? That's the one thing that makes racism, or any discrimination, less powerful in my mind. No matter how biased or bigoted a comment or action may be, the guy can turn around and explain why racism is wrong and, if worst comes to worst, punch 'em in the face. Discrimination against those who can defend themselves, obviously, cannot survive.

What would be far worse is if we discriminated against those who cannot defend themselves.What then, could be worse than racism? Look around you and thank God that we don't live in a world that discriminates and despises those who cannot defend themselves. Thank God that everyone of us in this room, in this school hates racism and sexism and by that logic discrimination in general. Thank God that every one in this institution is dedicated to the ideal of mutual respect and love for our fellow human beings.

Then pinch yourself for living in a dream. Then pinch the hypocrites sitting next to you. Then pinch the hypocrite that is you. Pinch yourself once for each time you have looked at one of your fellow human beings with a mental handicap and laughed. Pinch yourself for each and every time you denounced discrimination only to turn and hate those around you without the ability to defend themselves, the only ones around you without the ability to defend themselves. Pinch yourself for each time you have called someone else a "retard".

If you have been wondering about my opening story, I'll tell you that it didn't happen, not as I described it. Can you guess what I changed? No, it wasn't the focused hate on one person, and no it wasn't the slanted Asian eyes or cookie cutter features white people have or that shrill Hispanic hyena laugh (yeah, it hurts when people make assumptions about your person and use them against you doesn't it?).

The girl didn't say "hey Negro." There was no black person. It was a mentally handicapped boy washing the windows. It was "Hey retard." I removed the word retard. I removed the word that destroys the dignity of our most innocent. I removed the single most hateful word in the entire English language.I don't understand why we use the word; I don't think I ever will.

In such an era of political correctness, why is it that retard is still ok? Why do we allow it? Why don't we stop using the word?Maybe students can't handle stopping- I hope that offends you students, it was meant to - but I don't think the adults, here can either.

Students, look at your teacher, look at every member of this faculty. I am willing to bet that every one of them would throw a fit if they heard the word faggot or nigger - hell the word Negro -used in their classroom. But how many of them would raise a finger against the word retard? How many of them have? Teachers, feel free to raise your hand or call attention to yourself through some other means if you have. That's what I thought. Clearly, this obviously isn't a problem contained within our age group.

So why am I doing this? Why do I risk being misunderstood and resented by this school's student body and staff? Because I know how much you can learn from people, all people, even - no, not even, especially - the mentally handicapped.

I know this because every morning I wake up and I come downstairs and I sit across from my sister, quietly eating her cheerio's. And as I sit down she sets her spoon down on the table and she looks at me, her strawberry blonde hair hanging over her freckled face almost completely hides the question mark shaped scar above her ear from her brain surgery two Christmases ago. She looks at me and she smiles. She has a beautiful smile; it lights up her face. Her two front teeth are faintly stained from the years of intense epilepsy medication but I don't notice that any more. I lean over to her and say, "Good morning, Olivia." She stares at me for a moment and says quickly, "Good morning, Soeren," and goes back to her cheerio's. I sit there for a minute, thinking about what to say. "What are you going to do at school today, Olivia?" She looks up again. "Gonnasee Mista Bee!" she replies loudly, hugging herself slightly and looking up. Mr. B. is her gym teacher and perhaps her favorite man outside of our family on the entire planet and Olivia is thoroughly convinced that she will be having gym class every day of the week. I like to view it as wishful thinking. She finishes her cheerio's and grabs her favorite blue backpack and waits for her bus driver, Miss Debbie, who, like clockwork, arrives at our house at exactly 7'o'clock each morning. She gives me a quick hug goodbye and runs excitedly to the bus, ecstatic for another day of school.

And I watch the bus disappear around the turn and I can't help but remember the jokes. The short bus. The retard rocket. No matter what she does, no matter how much she loves those around her, she will always be the butt of some immature kid's joke. She will always be the butt of some mature kid's joke. She will always be the butt of some "adult"'s joke. By no fault of her own, she will spend her entire life being stared at and judged. Despite the fact that she will never hate, never judge, never make fun of, never hurt, she will never be accepted.

That's why I'm doing this. I'm doing this because I don't think you understand how much you hurt others when you hate. And maybe you don't realize that you hate. But that's what is; your pre-emptive dismissal of them, your dehumanization of them, your mockery of them, it's nothing but another form of hate.

It's more hateful than racism, more hateful than sexism, more hateful than anything. I'm doing this so that each and every one of you, student or teacher, thinks before the next time you use the word "retard", before the next time you shrug off someone else's use of the word "retard". Think of the people you hurt, both the mentally handicapped and those who love them. If you have to, think of my sister.

Think about how she can find more happiness in the blowing of a bubble and watching it float away than most of will in our entire lives. Think about how she will always love everyone unconditionally. Think about how she will never hate. Then think about which one of you is "retarded".

Maybe this has become more of an issue today because society is changing, slowly, to be sure, but changing nonetheless. The mentally handicapped aren't being locked in their family's basement anymore.The mentally handicapped aren't rotting like criminals in institutions. Our fellow human beings are walking among us, attending school with us, entering the work force with us, asking for nothing but acceptance, giving nothing but love.

As we become more accepting and less hateful, more and more handicapped individuals will finally be able to participate in the society that has shunned them for so long. You will see more of them working in places you go, at Dominicks, at Jewel, at Wal-Mart. Someday, I hope more than anything, one of these people that you see will be my sister.

I want to leave you with one last thought. I didn't ask to have a mentally handicapped sister. She didn't choose to be mentally handicapped. But I wouldn't trade it for anything. I have learned infinitely more from her simple words and love than I have from any classroom of "higher education". I only hope that, one-day, each of you will open your hearts enough to experience true unconditional love, because that is all any of them want to give. I hope that, someday, someone will love you as much as Olivia loves me. I hope that, someday, you will love somebody as much as I love her. I love you, Olivia."


Also, this was a bulletin that was posted on myspace today and I wanted to share it since I'm on the subject...

"Apparently , it has become a trend to poke fun at the mentally disabled on National TV and in movies. Last week I was watching one of my favorite shows on TV, SNL. And one of the skits was about 4 guys sitting at a bar listening to a song that made them reminisce on childhood memories. One of the guys began to tell his friends about his Dad taking him to the park and he watch his father run , jump around , and play in the sand, and for the first time he thought "I have a Dad" not " I have a Dad with Down Syndrome"....audience laughs. Then last night , I watched the premiere of "The Winner", and the main character was confessing to his girlfriend that he had lied about where he worked. He told her that he wasn't some big shot executive or something but that he worked in a video store. The girl said that's ok and that there's nothing wrong with working at a video store and he replied " No, there's nothing wrong with that unless you're over 30 and have Down Syndrome"......audience once again laughs.

Since when did it become ok to make jokes about people with disabilities? Why are they being portrayed as less than human? And it seems to me that anyone that has Downs is a target. Why are they being singled out? I bet if you were to substitute the word Down Syndrome in that joke with African American, Hispanic or Jew, there would be an uproar and this guy would be sent to rehab. There is no reason what so ever to make mean spirited jokes about the disabled. It's not only arrogant but also ignorant. And I'm shocked that NBC would even allow a joke like that to be aired. It shows how ignorant people are about Down Syndrome and disabilities in general. I guess it's really great to be so perfect. Who is going to stand up for them? Who is going to defend them? Apparently no-one, since I haven't seen any of these actors being publicly reprimanded or sent to "sensitivity camp". Or maybe is because the ones making the jokes are not as popular as Mel Gibson or Michael Richards. We must be their advocates. Down syndrome children/people have to fight hard and struggle to do the things we take for granted, but they can do it. They are not incapable. And this type of bullying has to stop.

I'm sick and tired of everyone making fun of these loving kids/people. They are human just like we are. they have feelings like we do and the fact that we even have to remind people of this is appalling."

New Blog!

Be sure to check out the newest blog I've added to my list, Kwisteena's Kwaziness. Christina is the mother of two beautiful daughters, Brittany and Kallie (who just happens to have a little extra chromosome too!)

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.

New friends!

Last night at the storytime we got to meet Georgia & her parents, Tricia & Alex from Unringing The Bell! It made the event even better! That was the first time I've gotten to meet someone from blogging.

We also got to see other people that we don't get to see that often. Joey started getting fussy after a while so I went to stand in the back and while standing back there, Joey buddy Nick (who's 19) came over to help me with Joey and wouldn't you know, the second Nick put his hand on Joey's back, Joey calmed down. Nick has the magic touch!

Standing Outside The Fire

I'm a country music fan and completely forgot about this music video by Garth Brooks until the other day when another mom sent it to me on myspace. I just wanted to share it with those of you who might not have seen it yet. Enjoy!

Standing Outside The Fire Video

Standing Outside The Fire lyrics - Garth Brooks lyrics

Garth Brooks Music Videos

Music Video Codes by VideoCure

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!

Joey update

I took Joey to the eye doctor the other day to see for sure if he had a modest left esotropia and thankfully he does not! So no glasses are needed yet! The eye doctor said he will probably need them in a couple years though. He also said that Joey has those brushfield spots that are a common trait with Down syndrome. I guess I never noticed them before :)

Joey is getting so good at sitting up for longer periods of time and reaching for things while sitting. He still can't catch himself when he falls so he throws a fit when he hits the ground. I keep thinking he's going to start crawling, but he can't get up on his hands and knees at the same time. He can do both, just not together. He is finally not buckling his knees when I hold him up to stand by his hands. I can't get over how much he loves to stand! His PT comes this afternoon so we'll see what she has to say.

I'm on a mission!

I've decided that I need to make a difference somehow helping to educate other women who were in my shoes in October 2005 when I got my CVS results that Joey did in fact have Down syndrome. I've been emailing back and forth with another mom here in Connecticut and hopefully we can start to not only educate medical professionals but also families who receive a prenatal diagnosis of Trisomy 21. Hospitals don't give out enough if any information on Down syndrome so families don't always realize the joy our children bring us and how they're not really much different than a typical child. Joey eats, sleeps and poops just like a typical baby, he might need a little more help getting strong enough to sit, stand and walk, but that doesn't mean to give up on him. His heart beats just like ours and his blood is red just like ours. The more I sit around and think about it, the more determined I become to make a difference!

To be continued...

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!

What a small world!

It was just brought to my attention last night that Tricia from Unringing The Bell also lives here in Connecticut! How cool is that! I love meeting other parents of children with DS and how cool is it that we're both part of the crazy world of blogging!?!? And we're both members of the CDSC!

Wiggles & DS clinic note

Well, The Wiggles were on The View today, I usually don't even watch The View but Joey's PT & OT were both here and they saw The Wiggles so I turned it up for Joey. Up until now I've refused to watch anything like that. No Wiggles, no Barney, no nothing. The only children's thing I've let Joey watch is his Baby Einstein DVD. Well, even at 10 months old, The Wiggles caught Joey's attention. Joey seemed to like listening to them. So we've been sucked into The Wiggles craze!

His PT & OT usually don't come to the house together but every couple months they like to just to "compare notes" and to give eachother ideas. They both can't believe the progress Joey is making each time they see him!

I just got the Dr's note from Joey's trip to the DS clinic from a few weeks ago. I can't believe how much this doctor went into detail! The note is wonderful! He said "his length is 68 cm, 3rd centile; weight 7.8 kg, 3rd centile; head circumference 44.5 cm, 10-25th centile. On the Down syndrome growth chart, his length is at the 25th to 50th, weight 50th and head circumference 90th centiles". I have DS growth charts, but I have no clue what the heck I'm looking at!

Why can't they explain that in English to where I could understand?

He also said that Joey should have a pediatric opththalmology evaluation done within the next month to see if there is indeed a modest left esotropia (WebMD & google here I come!). On that note, I'm off to the DownSyn forum to post this to see if anyone can explain growth charts to me! Or if any of you could help, please do!