Sunday, October 23, 2016

Day 23: Special Pediatrician?

Down Syndrome Awareness Month: Day 23

Does my child with Down syndrome need a special pediatrician?

For routine care, a child with Down syndrome does not need to be seen by any sort of specialist, a regular doctor is just fine! The most important thing is to fine a doctor you are comfortable with and who is willing to learn with you.

Day 22: Always Happy?

Down Syndrome Awareness Month - Day 22

Aren't people with Down syndrome always happy?

This is a common myth about Down syndrome. People with Down syndrome experience a full range of emotions just like anyone else. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Octavia can be happy, sad, grumpy, upset, angry, and anything in between. She is just like any typically developing child in that she has a range of emotions and different things can upset her. When she's not feeling well, she can let you know.

Playing in the leaves makes her happy!

Day 21: Book Recommendations

Down Syndrome Awareness Month - Day 21

What are some good books to read about raising a child with Down syndrome?

Here are a few recommended books on Down syndrome for parents:

Recommended books for children:

Day 20: Number of Orphans with Down Syndrome Internationally

Down Syndrome Awareness Month - Day 20

Internationally, how many children with Down syndrome are in orphanages?

In Central and Eastern European countries (excluding Russia), there are more than 1.5 MILLION children who have been placed in "public care". Since we know that statistically, Down syndrome occurs in roughly 1 in every 700 pregnancies, it is estimated that over 2,100 of these children have Down syndrome. Yes, some families try to keep their child born with Down syndrome but that is the rare exception, rather than the rule. Some of these 2,100 children do not survive because of serious medical complications, some because of a lack of medical attention, lack of food, or a lack of love.

In Russia, there are over 700,000 children waiting for families, meaning there are at least 1,000 children with Down syndrome waiting for families.

In Asia (China, Hong Kong, Korea, and India), there are at least 3.5 million orphans, which equates to about 5,000 children with Down syndrome living in orphanages.

In total, that's an estimated 8,100 children with Down syndrome who live in orphanages!

Thursday, October 20, 2016

Day 19: Down Syndrome and Adoption

Down Syndrome Awareness Month - Day 19

Why are there so many children with Down syndrome waiting to be adopted outside the United States?

The simple answer is that there are so many children waiting because these countries don't do prenatal screening so the parents do not know ahead of time that their child will be born with Down syndrome. Since they don't know about it ahead of time, they cannot abort their child.

The more in depth answer is that in many of these countries, children with special needs are seen as a stain on the family line and if they're not given up for adoption, it can be virtually impossible for the other children in the family to get married and have families of their own.

In addition to this, there is also the fact that many of these countries don't have the medical technology that we have readily available and even if they wanted to keep their child, they'd have a hard time finding and affording medical care or occupational therapy.

No matter how much parents might want to keep their child, they sometimes do so for the simple fact that the child will have a better chance to live if they're adopted internationally.

Outside St. Hripsime Church

Day 19: RODS

Down Syndrome Awareness Month - Day 19

RODS - Racing for Orphans with Down Syndrome

Did you know that there is an organization with the mission of nurturing a positive image of Down syndrome and to promote for the adoption of orphans with Down syndrome? They do this by raising adoption grant funds (one child at a time) and participating in organized, athletic races, and awareness events. This organization is called RODS, Racing for Orphans with Down Syndrome. Their goal is to raise $15,000 for each child they fund raise for.

To date, they've raised funds for: 15 children who are now home, 5 children who are in the process of being adopted, and 2 children who are still waiting for their forever families. This means their current child is #23!

One of the families in the process of adopting a girl from Octavia's country found their daughter while she was a RODS child! Sponsor Hadley has more of their story!

The current RODS orphan is Asher and he sure is a sweetie! Here's Asher's Reece's Rainbow page.

Wednesday, October 19, 2016

Day 18: What's My Favorite Thing?

Down Syndrome Awareness Month - Day 18

What's my favorite thing about Octavia?

My favorite thing about Octavia is her personality. She always finds a way to be funny and light up my day. A few pictures that show off her personality:

When did books become a food group?!

Yes, that's my child! ;)

Sitting in a bin of clothes because why not?!

She's cool!

Octavia is not defined by Down syndrome. She is so much more. If you're expecting a child with Down syndrome, please know that your child's value is so much more than you could possibly imagine!

Day 17: Self Advocacy

Down Syndrome Awareness Month - Day 17

Self Advocacy

Many people with Down syndrome can advocate for themselves. Sofia is one of those people. She was adopted from Ukraine as an infant, is a model/spokesperson with the Changing the Face of Beauty campaign, and modeled for Target! You can read more about Sofia here.

Sunday, October 16, 2016

Day 16: Is Down syndrome hereditary?

Down Syndrome Awareness Month - Day 16

Is Down syndrome hereditary?

The only type of Down syndrome that's hereditary (passed through genes from parent to child) is translocation Down syndrome. Of all cases of Translocation Down syndrome, approximately one third (equal to 1% of all cases of Down syndrome) are hereditary.

Unrelated picture but I'm really missing Armenia right now so I'm throwing a picture of Etchmiadzin Cathedral.

Saturday, October 15, 2016

Day 15: Abortions Due to Down Syndrome

Down Syndrome Awareness Month - Day 15

How many babies with Down syndrome are aborted before they're born?

For years, we have heard that an estimated 90-95% of babies diagnosed with Down syndrome in-utero are aborted. Those numbers surfaced in 1999 in Europe, where countries track prenatal diagnoses of birth defects and subsequent abortion. The US doesn't collect that information, and estimates here have been all over the map.

The Jerome Lejeune Foundation released a new study that gives us more solid data. Researchers used  information and data from a dozen states that do track live births of babies with Down syndrome to devise a new estimate of how many babies with Down syndrome were likely aborted. Their model showed that such abortions have reduced the US population of people with Down syndrome by about 30 percent.

That doesn't mean 30 percent of babies with positive tests for Down syndrome were aborted. The number reflects a reduction in the population we'd expect to be living with Down syndrome, regardless of when it was diagnosed. The key is a related study in 2012, which used a mathematical model to estimate that 67% of babies diagnosed with Down syndrome in the US are aborted.

While 67% is certainly better than the 90-95% we're seeing in Europe, it's still too many.

More information can be found in the Jerome Lejeune Foundation's Summer 2015 Newsletter.