Downsyndrome.com

These words sting more than any words that people say concerning the lives of individuals who happen to have Down syndrome. And unfortunately, they get expressed more often than you would think.   At times, they are said to parents, after they hear the news that their child, that they are expecting, has Down syndrome.  Any time is hurtful, and simply untrue, but during this critical time in a mother’s pregnancy, they are tragic.  They can often lead  parents to feel pressured  to terminate their pregnancy. Since 90% of all pregnancies, that are diagnosed in utero, end in termination, they certainly have had an effect on some.  The dignity and respect for their child is diminished by these hurtful words.  Not only do they pressure a parent to terminate a pregnancy, but they also leave a scar on the parents who choose life.  These parents will often report that they replay them over and over in their minds, when instead they should be bonding with their newborn and enjoying their blessing. Our hearts and prayers go out to parents who were told these words, while they were pregnant, and then believed them.  We can only hope to be a voice, that helps to prevent it from happening to other parents. 

Unfortunately, pregnancy is not the only time parents hear these words.  Recently, we have been made aware of the Australian Government’s response to a physician whose child happens to have Down syndrome.  The family has been denied residency because their child has Down syndrome.  Now, we are finding out this is more wide spread than was first reported.  Here is an excerpt from the latest article from The Austrailian.  ”British midwife working in a Perth hospital was refused permanent residency by the immigration department because her Down syndrome child was considered a financial burden on the country. ” 

Indeed, it is a slippery slope.  The dignity and respect for all life, begins in the womb.  When we inform a parent, who is pregnant, that their unborn baby is a burden on society, we are giving a license to the general public to believe that our children are a burden on society.  One message begets the other.  All life is precious, born and unborn. Dignity begins at conception.  We need to take an honest look at how our attitudes toward individuals in utero, have affected our attitudes toward those who are an active part of our societies.

The NDSC (National Down Syndrome Congress) has created a new video  that debunks the message of “a burden on society.” We encourage you to watch it.  They have done a beautiful job of showing the world, that indeed, we are more alike than we are different! Not a burden, but a blessing!  See for yourself!

We support the DSAWA as they work toward educating others of the dignity and respect for individuals with Down syndrome.

My mentality is, why post when you have nothing postworthy? This explains my recent absence. After all, who wishes to hear about paper clip sorting? But Grapes insisted, so here I am.

I’ve been spending my day off at the resort. Fifi’s Pet Palace, to be exact. They always have what I need when I’m feeling down in the dumps. I had a relaxing pedicure and some French dog biscuits washed down with a delightful glass of red wine. I’m feeling much better now.

Perhaps I should begin doing a bit of job-hunting. Or impressing of the current boss.

In the meantime, Ernest is still sick, but it seems to be getting better.

Bennett: I’m very fond of Avery. (This is Bennett’s new favorite expression. He’s very fond of many things–Bailey and applesauce with cinnamon sugar on top and Scooby-Doo and leaves, raked into a pile, for jumping in.)

Me: I’m very fond of Avery, too.

Bennett: He doesn’t have words like these.

Me: It’s true. Avery doesn’t have as many words as you do.

Bennett: But he talks in sign language, like this. (He signs thank you and thirsty and sorry and book. Then he signs baby, because we all love that one.)

There was a time when a conversation like this might have made me sad. Because, in this conversation, it’s revealed that Avery’s differences are so clear, so much a part of him, they’re even apparant to a five-year-old.

But this exchange didn’t make me feel blue. Instead, it made me feel good, because it meant that Avery’s brothers are able to talk about him, and their perceptions of life with him, without fear or worry. I sometimes envy my kids, because they are growing up with an early understanding that difference isn’t bad, or good, but simply different. And their world is richer for it.

As is mine.

I am better for knowing all of you. (I’m very fond of you!)
I am better for risking my heart.
I am better for loving Avery.

I hold in one hand hand all the good that has come into our lives with Avery’s birth; in the other, all the hard things. Which hand is heavier, which one means more? I don’t have an answer. Everything is connected, there is no one without the other. All I know is that my hands are full, and this fullness feels like life.

Most of Polly’s therapies are now at a therapy center.  She goes to a therapy preschool two times a week for two hours.  She’s at the center three more hours at various times for physical therapy and speech.

At home she sees her developmental therapist and her occupational therapist.  We have a little table and a chair she sits at for therapy time. 

In the past I’ve always sat in on her home therapies.  I learned what Polly was learning and then repeated therapy activities with her throughout the week.

Recently Polly has really struggled with home-based therapy.  She doesn’t want to work and assumes her new independence by geting up and crawling or walking away.  When I was close she would come to me and I would ease her back to her seat.

So for two weeks I’ve sat in the dinning room and worked on the computer while she had her session.

It’s been great!  She interacts with the therapist much better without mom right there, follows directions, stays on task better.

My girl is working me out of a job!

I’m so proud of her.

with Sarah Palin. It was great.
The best that I got out of it was that she did not rule out 2012. Everything else was gravy. She came out as being very ordinary, very intelligent and very quick. Everything that the mainstream media plays against her. Everything that we are and believe in. We all need to get behind Sarah Palin in 2012.

CHESTERFIELD, Mo.— When Missouri Sen. John Loudon and his wife, Gina, decided to adopt their third child, they knew three things: They wanted a little boy, they would name him Samuel and he would have Down syndrome.

“This was always part of the plan,” said Gina Loudon as their now 3-year-old Sammy darted in and out of the living room in his slippers, giggling loudly.”We didn’t know much about how it was going to happen, but we just knew.”

The politically active couple with deep roots in the anti-abortion movement said their passion for Sammy spurred them to take legislative action on behalf of children with Down syndrome. It also put them in the center of an ongoing national discussion about genetic testing, the acceptance of people with disabilities and the type of information about Down syndrome that new or expecting parents were getting from their doctors.

Various studies estimate that 80 to 90 percent of parents who receive a prenatal diagnosis of Down syndrome through genetic testing choose to abort the fetus. Researchers believe this is the cause behind an 8 percent decline in people with Down syndrome in the United States in the past two decades.
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