1

Is this the World We want?

Some of you may or may not have seen the articles and reports about Iceland and Down Syndrome.  Currently about 3-4 children with DS are born in Iceland PER YEAR!!  Yes, that’s right…each year only 3-4 amazingly special kids are given the chance at life.  Often times the only reason of these births occur is because the early screening was wrong.  Because of this, Down Syndrome is almost fully extinct in some countries.

Check out the article here: “What kind of society do you want to live in?”: Inside the country where Down syndrome is disappearing

Why is this important to us?  Because this epidemic is spreading.  These early screening are also being used in Australia, Europe and the US.  The need for “perfect children” is taking over the desire for life.  Doctors are pushing termination on new mother’s when they are uninformed and emotional.  I’ve spoken to a few new mama’s who said almost every Doctor appointment they have they are asked multiple times if they are sure they don’t want to abort.  This is horrible!!  The value of any life is not cherished anymore.

I understand, I know DS is NOT for everyone.  This is a lifelong, stressful, scary, and amazingly beautiful commitment.  But to say that Jana’s life is less valuable than our other children is ridiculous.  God has a plan and a purpose for her that is bigger than any of us can imagine.  She and all her other DS buddies make our world a better place.  Their determination, their tenacity and joy is contagious to those around them.  To eliminate them from our society would be detrimental to us all.

The problem is not these mama’s who are confused and scared.  All parents are terrified when they find out their child has something wrong with them.  The problem starts at Doctors who push termination.  Instantly they view DS as a defect that should be removed.  Instead of educating these families of the new progress the DS community has had.  Adults with DS are productive, happy members of society now.  Things have changed in the last 30 years and that should be encouraged not down played.

I saw on twitter a quote I want to share from actress Patricia Heaton (@patriciaheaton).

“Iceland isn’t actually eliminating Down Syndrome.  They’re just killing everybody that has it.  Big difference.”

We need to remember that ALL LIFE MATTERS!!  This shouldn’t just be a discussion of DS termination.  This is life termination.  Our lives are ambushed daily but the petition to be accepting, tolerant and loving to those around us.  But yet, when a innocent child is born with slight differences, we instantly want to throw them away.  Where is the respect for these tiny lives?  Where is the love for life?  downrightperfect

Advertisements
0

A couple with Down syndrome is fighting to have children

1475597215635I found this article (A couple with Down syndrome is fighting to have children) on Yahoo! today.  Its a topic that I think every parent of a child with disabilities can relate to.  On “Born This Way” we’ve watched Meg try to convince her mother that parenthood is in her near future.  One day Juan and I will be discussing this with Jana.  Should adults with Down Syndrome have children? Current statistics show that a couple who both have Down Syndrome will have a 50/50 chance of having a child with DS.  That’s not taking in account the fact that only 15-30% of woman with DS are fertile.

So who makes the decision if they should conceive or not?  The majority of adults with DS still need help to do day to day activities.  Many parents continue to support and help their children way into adulthood.  If there was a baby brought in, those parents will most likely raise the child.  Even if the DS couple had full intentions to care and raise their child, it just might not be a possibility.

The article post:

“That makes me feel very worried, apprehensive, and concerned,” Anderton’s mom says, and Cox’s dad agrees: “I don’t see parenthood being something that they’re going to achieve, or really they probably should achieve.” He notes it would be “very difficult” for the couple to handle not only day-to-day activities such as having jobs and driving, but also parenting skills such as helping out with homework and dealing with adolescent issues.

What is the answer?  Are parents of children with DS allowed to take extreme measures to sterilize their children?  Do they support and raise the new baby in order for their children to experience everything in life?  Do they try to educate and convince their children that parenthood is not an option?  These are very difficult questions that unfortunately can only be answered by each individual family.

It’s incredibly heartbreaking to know I will have to have this conversation with Jana one day.  I want her to experience everything possible in life just like the typical kids around her.  But I just don’t know what I will tell  her on that day when she asked me when she will have children.

Check out the full article and I would love to heart your thoughts!

0

A little Inspiration

I came across this article and wanted to share it with you.  It is about a woman, Judith, a twin, born with Down Syndrome in 1943.  At the time her family had no idea the full effects of her diagnoses or that she was completely deaf.  She was sent to live in an institution at the age of 7.  From then on, she hardly had contact with her family, even her twin sister.  After many years apart, the sister eventually reunited and Joyce, her twin, was granted guardianship of Judith.  Soon Judith started creating amazing sculptures with yarn, twine and basically anything else she could get her hands on.  This woman, who never said a single word, was finally having a way of communicating.

Joyce recently wrote a book about the girls lives and the amazing art her sister created.  At the age of 61, Judith passes away but her art has lived on and is inspiring both the disabled and typical communities.

Read the full article here : http://www.huffingtonpost.com/entry/judith-scott-joyce-scott-art_us_57c9cdafe4b0e60d31df1b2c

You can also find Joyce Scott’s book here: Entwined: Sisters and Secrets in the Silent World of Artist Judith Scott

57c9e53b170000172ac7750b  “The first piece of Judy’s work I see is a twinlike form tied with tender care,” Joyce writes.  “I immediately understand that she knows us as twins, together, two bodies joined as one.  And I weep

1

Making Progress

sleeping beautyBig things to share with you today!!  First of all, Jana slept through the night for the first time since November!!  She went to sleep around 11:30 and I had to wake her up at 8:15 to get ready for physical therapy.  I honestly woke up like a new mom, instantly thinking she stopped breathing or something horrible.  But nope, she was peacefully sleeping.  We were surprised because yesterday was a very rough day.  She was extremely tired and grouchy, complaining most of the day.  We honestly went to bed figuring she’d be up all  night.  But last night we gave her a bath and added a little bit of aromatherapy bubble bath.  We figured it was worth a shot, because baths usually don’t make a difference if she sleeps or not.  So I’m not sure if it was the aromatherapy or not!  After her bath she had her normal 1 hour full of hyperness and then some milk.  She crashed right after.  So this Friday we’ll be in San Diego and I plan on purchasing some essential oils to try out.  After doing some research I’ve found that lavender and roman chamomile have both been known to help with sleep issues.  So if any of you readers know any tips on essential oils, please let me know!!

Second big news!  Since Jana has been doing so much better on her army crawling, Betty, her therapist, decided we should start working on crawling on all fours.  Normally when we try Jana face plants almost immediately because she doesn’t move her arms.  She either locks out or just moves them both at the same time.  So to watch her actually do what she needed to do, I was so proud!!  It is just a small step, something that seems so insignificant, but trust me its HUGE!!  It can take up to 6 months for her to master crawling so I know we still have a long way to go.  But its progress!!  Check her out!!

1

Friends fight school for boy with Down Syndrome

I think it’s my biggest fear.  That Jana will attend school one day and the kids will not accept her.  All we hear about are school bully’s and how horrible kids with disabilities are treated.  I remember being in school and honestly hardly ever interacting with any of the “special ed” kids.

This story brings a smile to my face!!  When a young boy, Brady, was told he could no longer attend the school he had grown up in, his classmates rallied round and fought to keep him there.  Why was he being moved?  Because the school didn’t feel that they were fit to give Brady the schooling he needs.  Unfortunately, this happens quite often.  Children with special needs cost the school more money than typical children do.  So a majority of students are sent to schools that focus on specialized care.

Thankfully Brady was given the OK to attend school with his longtime friends for another year.  This might be something his mother has to continue to fight for.  But it seems to me, Brady’s friendships are worth the fight!

Check out the full article here:  Friends fight school for boy with Down syndrome

“He’s one of the kindest kids in our grade,” proclaimed Owen Armstrong, 10. “Every day, I wake up and I’m looking forward to school because Brady goes there.” “He’s taught me so many things through the time that I’ve known him. … He lights up the room whenever he’s around. He helps people when they’re down,” said Ella Blakeley, 11. “He makes people laugh.”

 

0

Mom helping children with Down Syndrome find homes

I know I just posted, but I saw this article online and had to share it.  First of all, dear friends of our adopted their beautiful daughter through Bethany Christian Services.  They are a Christian organization that not only helps provide homes for children but also offers counseling for the birth parents.

This article however is about a woman who is helping children from China who have Down’s find homes.  As many of you know children with special needs in China are often put up for adoption.  Also, it is usually very difficult to adopt an international child with special needs.  In fact, her son is one of the first children adopted from China with Downs!

Check out the article here : Mom helping children with Down Syndrome find homes

I love that this has opened doors, however we cannot forget that there are tons of children with special needs who are waiting for homes here in the US.  Check out this link for info National Down Syndrome Adoption

0

Teen With Down Syndrome Brushes Off Bullying and Breaks Into Modeling

I am just amazed and inspired when I read articles like this!  I feel like my girl is the most beautiful thing ever.  The Down’s features she has only enhances her cuteness 🙂  God created these children for a special purpose.  They are beautiful and made exactly the way God wanted.  I love that society is finally starting to pick up on how great these kids are!!

Check out the article here: Teen With Down Syndrome Brushes Off Bullying and Breaks Into Modeling

“Many doors will close and many will open,” Gigi told The Mighty in an email. “Always approach your obstacle with a ‘I can’ attitude and with a smile on your face because you are worth it. My belief is that you can do all things through Christ and with prayer nothing is impossible. Never give up and if no one else believes in you I do. We are winning. I am determined to help change the face of beauty.”

How could you not just love a girl with an outlook like that?!  So inspiring!!