Angel Eyes

Nathan is mommy’s “angel eyes” and today my little guy had an appointment at the Eye Institute. It’s recommended that children with Down syndrome have their vision initially tested at 6 months of age because they have a slightly higher risk of vision problems.

We met first with the medical assistant who asked a series of questions including “do Nathan’s eyes water a lot? Does he get lots of build up in them?” The answer to both was no. Apparently, this is very common in children with Down syndrome.

During this initial exam the medical assistant made a note worthy observation - Nathan was tilting his head to the right. He asked if we had noticed that this happened regularly - I hadn’t. Although, I did notice it a few times while he was watching his Baby Einstein movies because he wasn’t sitting right in the chair. He measured the tilt to be about 15 degrees to the right. He explained this can occur for a number of reasons – Nathan’s positioning in the womb or an eye problem that at this stage could be hard to accurately determine. Now, I was worried.

After putting drops in Nathan’s eyes to dilate his pupils we headed out to the waiting room for 30 minutes of worrying time. When we met with the doctor she put Nathan through the normal vision tests and determined that he has a slight stigmatism and is a little farsighted - completely normal for an 8-month old baby. After she gave Nathan a clean bill of health, and said we wouldn’t need to come back until he is about 3 or 4 years of age, I asked her about the head tilting observed by the assistant. She seemed surprised and almost immediately provided me with a difference of opinion analogy using three blind men and an elephant. She explained how each blind man would describe the elephant differently depending on the location of the elephants body – just as she got to describing the second man - I cut her off and said “ I get it.” What kind of answer is that?

She may not believe there is much to her assistant’s observation, and there may not be, but I’ll be mindful and observant of Nathan’s head positioning and speak to his physical therapist about it.

The good news is that all those carrots he eats are paying off!!!

I Scream - You Scream...

We all scream for ice cream!!! (My father used to sing this when we were young.)

Nathan celebrated with his second-cousin for her birthday on Sunday. As you all know, traditional birthday party activities include cake and ice cream. What was so interesting about this particular cake and ice cream celebration was that Nathan's Aunt Kathy was feeding him these treats like it was baby food and he loved it!!

You're probably thinking "so what, he's a child - all kids love cake and ice cream" and I wouldn't disagree. To understand why this struck me I have to give you a tad bit of context. My sister doesn't have junk food in her house and doesn't let her own daughter indulge that often. They eat and drink organic and her little sweet pea wouldn't touch white bread with a ten foot poll! And, I know she'll read this and say - I'm not much different and I won't contest that either. I think she's just trying to be the favorite Aunt!!! Not that I blame her, I do the same thing with Emily. Isn't that what Aunts are for? Spoiling!

My favorite song and Nathan's favorite ducky

When Danny and I hired the DJ for our wedding I had only one request - DO NOT play the chicken dance. I really have no explanation as to why this particular song bothers me - it just does. Nathan's Grammy bought him this lovely little dancing and singing duck and as you'll see from this video he gets a kick out of it. Irony can be so entertaining.

Nathan Strikes Again!!!

The Terry family would like to extend a heartfelt thank you to the Times Union, and staff writer Cathleen Crowley, for featuring the following story on the front page of their Sunday newspaper!!

Lives filled with potential

Down syndrome community salutes GOP's Palin, who has infant with condition

By CATHLEEN F. CROWLEY, Staff writer Click byline for more stories by writer. First published: Sunday, September 7, 2008

Kandi and Daniel Terry never tested their unborn baby for a genetic disorder because the outcome wouldn't change anything, Kandi Terry said.

The couple vowed from the start that they would love the baby no matter what. In January, their son, Nathan, was born with Down syndrome.

"I'm not going to say it was easy," Kandi Terry said.

The East Greenbush couple embraced their son, and they praise the family of Sarah Palin, Alaska's governor and the Republican nominee for vice president, for doing the same. Capital Region families touched by the genetic disorder believe Palin will raise awareness about Down syndrome, and hopefully, change attitudes about the condition.

"Listening to her speech (at the Republican National Convention), the part that really impressed me the most was when she referred to her son, she referred to him as a joy," said Diane Lange, executive director of the Down Syndrome Aim High Resource Center in Albany. "She doesn't use the word 'burden' or things like that. It's important for the public to hear, because I've heard people in the news (media) say 'and unfortunately, her fifth child was born with Down syndrome.' "

Down syndrome is one of the most common genetic disorders. About one in every 733 live births results in a child with the condition -- about 5,000 births in the United States and 500 in the Capital Region each year.

Palin learned her son, Trig, now 4 months old, had Down syndrome when she was pregnant. Other than her husband, she didn't tell anyone. After his birth, she released a statement saying, "We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed."

Terry learned about Palin's son while she was researching the syndrome after Nathan's birth, so she recognized the name when her husband broke the news of Palin's nomination.

"I know the impact she will have if she gets into the White House -- and I believe she will," Terry said. "She will be a voice for those people whose voices may not have been heard loud enough."

Daniel Terry is an electrical contractor and Kandi Terry is a political analyst for the state Senate and an instructor at Hudson Valley Community College. Kandi Terry immersed herself in the research about the syndrome. Four months after Nathan was born, she was sworn in as a board director at the Aim High Resource Center.

She maintains a blog about her firstborn child (nathandanielterry.blogspot.com) to educate people about raising a child with Down syndrome.

Now that the spotlight is on Palin, advocates in the Down syndrome community have distributed tip sheets to the media with recommendations on the proper language to use when talking about the disorder -- they discourage the word "disease."

The national organization prefers Down syndrome instead of Down's syndrome, noting most dictionaries list both but the apostrophe 's' connotes ownership or possession. The English physician John Langdon Down characterized the condition, but did not have it, the sheet says.
Do not say people "suffer from" or are "afflicted" by Down syndrome, it says.

"You know what kind of image that projects," said Lange, who has a 22-year-old daughter with Down syndrome. "Certainly individuals with Down syndrome are living very full lives, and it's offensive to them and their families to hear language like that."

Brie Nobis, 27, of Guilderland agrees. Nobis, who has Down syndrome, lives on her own, works in the mailroom of the adoption unit of the state's Child and Family Services department, and is engaged to be married.

"I believe that Down syndrome is normal," Nobis said. People with the condition "may look different and act different, but we have a life just like other people."

Children with Down syndrome are born with three copies of chromosome 21, instead of two. The genetic abnormality causes cognitive impairments and health problems that often affect the heart and lungs, and vision and hearing.

Palin's run for vice president will educate people about the syndrome, said Dr. Harm Velvis, a pediatric cardiologist who is the father of a 17-year-old daughter with Down syndrome. He is president of Aim High.

"Seeing this family in the spotlight can take some of those misconceptions away," Velvis said.

The myths are that people with the syndrome live in institutions, die young and do not contribute to society. The truth is, said Velvis and Lange, most live with their families, survive into their 50s and 60s and can give back.

"It's the attitudes that need to change more than anything," Lange said. "Just an openness in people's thinking that individuals with Down syndrome can live, work and play in their own communities and have potential."

Cathleen F. Crowley can be reached at 454-5348 or by e-mail at ccrowley@timesunion.com.

Questions and answers about Down syndrome..

The announcement of Sarah Palin as the Vice Presidential running mate of John McCain has sparked a national conversation about Down syndrome and I couldn't be more thrilled! I wanted to share a very well written article by Patricia Bauer from this morning. The article, "Questions, we get answers" provides a well rounded and accurate summary of Down syndrome - in a question answer format. Here's a glimpse -

"6.) Are there other high profile people with family members with Down syndrome?
Let’s see –
Former French president Charles de Gaulle (daughter); former vice president Hubert Humphrey (granddaughter); former senator and governor Lowell Weicker (son); entertainers Roy Rogers and Dale Evans (daughter); St. Louis Cardinal slugger Albert Pujols (daughter); Congresswoman Cathy McMorris Rodgers (son); Congressman Pete Sessions (son); D.C. Delegate Eleanor Holmes Norton (daughter); journalist George Will (son); playwright Arthur Miller (son); Emmy-winning Sesame Street writer Emily Perl Kingsley (son); celebrity chef Nigella Lawson (niece); Oscar-winning actor Jamie Foxx (sister); actor John C. McGinley (son); and Rosario Marin (son), the former treasurer of the United States and current secretary of California’s State and Consumer Services Agency.

And let’s not forget the high-profile people who themselves have Down syndrome: Chris Burke and Andrea Friedman, the actors with Down syndrome who starred in television’s “Life Goes On” series; Karen Gaffney, who swam across Lake Tahoe; Brad Hennefer, who earned two varsity letters (golf and basketball) in high school; actor Luke Zimmerman; actor Blair Williamson …

Interesting fact: Down syndrome was first described in the 19th century by British physician John Langdon Down. Nine years after his death, his grandson was born — with Down syndrome."

please see this link http://www.patriciaebauer.com/2008/09/05/questions-we-get-questions/ for the entire article.