31 for 21: Siblings

According to a new study put out by Dr. Brian Skotko, 97% of siblings ages 9-11 said they love their brother/sister with Down syndrome. Similarly, among siblings ages 12 and older, 97% expressed feelings of pride about their brother/sister with DS and 88% were convinced they were better people because of their sibling with DS. 


Around 90% of birth parents in the U.S. who find out their fetus has Down Syndrome chooses to end their pregnancy. One of the reasons is because they don't think it's fair to their other children. 


If they only knew....it is just the opposite!

31 for 21: Facts about Down Syndrome

These facts are taken from the NDSA website. I learned a lot when I read them. I hope you will, too!

• Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

• Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies is born with Down syndrome.

• There are more than 400,000 people living with Down syndrome in the United States.
• Down syndrome occurs in people of all races and economic levels

• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

•  People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.

•  People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

•  All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesse

• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

• Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

31 for 21: People First Language

My post on Facebook today:


I've never been one to worry much about being totally "politically correct" in the way I

phrase things, or get on a soap box for that matter. But now that I have a child with a

disability, I feel like I need to help people learn a new language.

It's called "People First Language."


When you refer to a person with Down Syndrome, PLEASE remember that he or she is just

that... a person. Anya is a girl who happens to have Down syndrome. She is NOT a "Down

syndrome child" or a "Down's girl" Or (this one gets me the most...)"A Down syndrome."

Sorry, it sounds like you're classifying a dog breed or something. Down syndrome DOES

NOT define my daughter. Just like my differences don't define me. If they did, you would

call me "an unorganized, sensitive crazy lady with six kids," instead of "Heather." :)

Down syndrome is only one of many, many things that make up a person with DS. Practice

saying "person with Down Syndrome." WITH is the key word. It will help make a

difference in how people view those with disabilities or illnesses.

31 for 21: The Down Syndrome Creed

October is Down Syndrome Awareness Month! I'm gonna do my best to blog a few times a week with  little things about Down Syndrome that I think everyone should know.

To start off, I'd like to share this poem that is popular among the Down Syndrome community. It was written by a special ed teaching assistant named Emma Jane Rae.

The Down Syndrome Creed

My face may be different

But my feelings the same

I laugh...

and I cry

And I take pride in my gains

I was sent here among you

To teach you to love

As God in the heavens

Looks down from above

To Him I'm no different

His love knows no bounds.

It's those here among you

In cities and towns

That judge me by standards

That man has imparted

But this family I've chosen

Will help me get started

For I'm one of the children

So special and few

That came here to learn

The same lessons as you.

That love is acceptance.

It must come from the heart.

We all have the same purpose

Though not the same start.

The Lord gave me life

To live and embrace

And I'll do it as you do

But at my own pace.

Six Months Home!

SIX MONTHS AGO today, our new little pumpkin flew across the ocean 

 landing right into the arms of four very excited brothers and one ecstatic sister.

Oh, what six months can bring. We hardly knew Anya then. She hardly knew us.
I'm so excited to see how much more we'll discover about each other in the next six months!

Anya  is drinking in every ounce of knowledge that she can in Kindergarten. Her aide loves her so much, she spends her paycheck on things for Anya, like rewards and books.  I kid you not!  She tells me how brilliant Anya is every day and what new things she caught on to. We are sooo blessed to have Ms. Pam!

I'd like to give a more detailed update on what Anya is saying and doing, but time won't let me today. I just wanted to be sure to acknowledge this anniversary!

Happy six months home, Anya. Our family wasn't complete without YOU in it! 

We love you FOREVER!!

Forever

We're signed, delivered, and now we're sealed!

I wrote the details on our family blog if you'd like to read about it.

Buddy Walk

 Saturday, we participated in the Utah Buddy Walk. This year, all the UDSF chapters combined into one event, so it was huge!

It was fun to meet lots of people and feel of the awesome camaraderie that unites those who love someone with DS. It's an instant family. I love being part of something so inspiring.

Jeremy commented one time when we were at a DS activity, that when he looks around at all the families with the cute little ones with DS, he feels like we hit the jackpot. Like "We GOT one, too!" That made me smile.

If people only knew how awesome these kiddos are, I don't believe anyone would be sad when they learn their baby has DS. Worried about health problems, yes, but not sad. They rock. That's all there is to it! I think every family needs a child with an extra chromosome. But that's just me. :)

I actually met two ladies at the buddy walk who said they always wanted a child with DS. One finally hit the jackpot with her 7th baby, and the other one just adopted a little boy from China with DS and are getting ready to go back to get his best friend.

Kecia Cox, who just brought Mia home from Ukraine (and is pregnant with TWINS!) a few of her amazing friends, and I all helped to spread the word about Reece's Rainbow. Most people who adopt kids through RR already have one child with DS, so Buddy Walks are the best place to spread the word. We talked to a lot of people. A few have been considering adoption and a few said they would love to help with donations. We figured that if we could influence even one family, then this booth was well worth our while!

This is the poster that I made in Photoshop and had Jeremy print at his office.

A closer crop of the words...

It was so hard making this poster. First of all, I had to choose which orphans' pictures to include. But then, I had to click on each orphan's picture on the website to make it big before downloading it. 

This showed a closer view of their eyes, which made me just want to go scoop them right up. 

Every one of those faces represent a perfect child who is on his or her way to a horrible place. 

Someone like Anya who will blossom with love.

Anya & Eli, next to  Mia and Bree Cox and their cute cousin, a.k.a "The Trisomy Trio. Cute!

The famous Rachel Coleman from Signing Times did a concert with Alex and Leah!