The Right "R" Word

Here's a PSA (Public Service Announcement) starring one of our downsyn friends. Payton is the first little girl shown.

http://www.youtube.com/watch?v=qk9ZhuJt2JY

Down's tests are great risk for all babies Screening for syndrome puts healthy foetuses in danger of being miscarried, new research shows

This article was written by: Victoria Macdonald
and was published in The Observer, Sunday September 14 2008

Down's tests are great risk for all babiesScreening for syndrome puts healthy foetuses in danger of being miscarried, new research shows
Victoria Macdonald The Observer, Sunday September 14 2008 Article historyRisks in screening unborn babies for Down's syndrome are far higher than previously claimed, new research will say this week. For every three unborn Down's syndrome babies prevented from being born, two healthy babies will be miscarried because of the methods used to detect the condition.

The research claims that, in detecting and preventing the birth of 660 Down's babies, 400 healthy foetuses are lost.

The research casts doubt on the advice and risk assessment given to women when they are deciding whether to undergo the screening and subsequent testing to assess the health of an unborn baby. The National Health Service currently cites a miscarriage rate of between 1 and 2 per cent following the invasive amniocentesis and chorionic villus sampling (CVS) tests, which are offered to expectant mothers who are considered to be 'at risk'.

The authors of the paper - which is being published in the Down's Syndrome Research and Practice journal - say that, while the number of pregnancies diagnosed with Down's syndrome that are terminated, miscarried or born are recorded, no analysis has ever been attempted to determine the number of non-Down's babies lost.

The authors are from the charity Down's Syndrome Education International and might therefore be accused of pursuing their own agenda, but the research has been shown to a number of screening experts who have assessed the findings. In a film to be screened on Channel 4 News at 7pm on Tuesday, Professor Kypros Nicolaides, head of the Harris Birthright Centre at King's College Hospital in south London, will say it is 'completely unacceptable' to lose this number of normal babies.

'Our aim must be to improve the detection of foetuses with Down's in those women that want to have a test and dramatically reduce the number of normal babies that are lost as part of this process of screening,' said Nicolaides, who has been a pioneer in the use of ultrasound for improving screening.

The authors of the study - Frank Buckley and Professor Sue Buckley, a director of the charity who also works at Portsmouth University's psychology department - blame false screening results in the initial blood testing and then the use of subsequent testing, which involves inserting a fine needle through the woman's abdomen and either withdrawing amniotic fluid or taking a tissue sample.

To detect as many Down's babies as possible, the initial screening threshold is set wide, which means that more than 95 per cent of women defined as 'high risk' will not be carrying a baby with the disorder, yet most go on to have the amniocentesis or CVS tests.

The Buckleys and Nicolaides are particularly concerned about how well qualified the staff are who carry out the invasive testing and about their ability to use ultrasound. Studies in the past have shown that loss rates following amniocentesis are six to eight times higher among inexperienced practitioners.

Because no records of non-Down's baby losses have ever been kept, the Buckleys say that their ratio of three to two can only ever be an estimate. But their methodology appears to have been broadly accepted.

'We are looking at the wider question of public health policy,' said the Buckleys. 'The screening for Down's syndrome has consequences for every pregnant woman. You cannot look at it as just a search-and-destroy mission focused on babies with Down's alone.'

About 750 Down's babies are born every year in England and Wales and the Department of Health said the primary aim of screening for the syndrome was to help women make informed decisions about their pregnancies. A spokesman said the programme was based on the latest evidence and supported the most effective test in terms of both the detection rate and the aim of lowering the screen-positive rate 'in order to minimise the number of diagnostic tests'.

The National Institute for Health and Clinical Evidence has recommended a new 'combined screen', which is meant to be more effective in assessing who is at risk, but this has yet to be rolled out nationally.

The Down's charity has now written to the government asking for a thorough reappraisal of the 'purpose, performance and safety' of the screening programme.

· Victoria Macdonald is social affairs correspondent for Channel 4 News.

THE SAD THING ABOUT THIS... I KNOW THERE IS SUCH A LONG WAITING LIST IN THE US FOR ADOPTING KIDS WITH DS. I WOULD LOVE TO SOMEDAY ADOPT ONE- DON'T KNOW IF IT WILL EVER BE RIGHT FOR OUR FAMILY- BUT, IF THEY ONLY THOUGHT ABOUT CARRYING THE BABY TO TERM AND ADOPTING THEM OUT. AND ALL THOSE BABIES LOST TO INCONCLUSIVE TESTS!!!! WHAT A SHAME!!!

I'm a Mom of a High Schooler!!!!!

I'm trying not to freak as we get Kiersten ready for her first day of High School tomorrow! I have a four year old... how can I possibly have a high schooler also??? This summer has been great for her. We started out spending time with our friends in Utah only to rush back and get ready for Trek. They spent 3 days, in period clothes, pulling a handcart and living the life of a pioneer. Within a week after coming home from trek Kiersten packed up to go to EFY (Especially For Youth) a church sponsored week long conference for boys and girls 14-18 years old. EFY was life changing for Kiersten. Not only were they fed spiritually, they met a lot of new friends and they were taught how to safety and correctly interact with boys. The boys escorted them to every activity, joined in on Morning devotionals, and danced with them at two dances. Immediately after returning from EFY I got Kiersten unlimited texting (this for a girl who has had her phone for two years and has only used it a dozen times - to call me). She hasn't stopped texting since. I know she is keeping in touch with a few boys from EFY. She has gone to the last three youth dances and spent the last week at girl's camp. I am amazed at how much she has grown this summer. So, she has a new dew, unlimited texting and her dancin' shoes on... I think my baby is ready for High School. But don't let her new found social skills fool you- she is still totally academic. She will be taking all honors class, Spanish, Seminary and Alg. 2 Trig. Yikes!!! Wish me luck :)

The "R" Word

I found this post on Downsyn.com and asked if I could post it here. Love, love, love it!

LANGUAGE CAN HURT

We are moms of young children with developmental disabilities. We are your neighbors, your friends. We see you at baseball games, shopping, church, and the movies. When we think of our children, we use words like “beautiful” and “adorable.”

But often we hear words that hurt, words like the R-word, “retarded.”

People often use the R-word casually to insult and denigrate another person. Because the word is used in those ways, it’s easy to understand why as mothers we are hurt and concerned when we hear it. Over the years we have wondered about (and dreaded) the day when our children would come home after hearing and understanding the insinuation behind someone's use of the R-word.

The casual use of the word is so common that a week doesn't go by that we don't hear it. Every day we are reminded that our children are becoming more aware of their differences and so too are their peers. That day we've dreaded is fast approaching.

When famous movie stars, celebrities our children already know and love, take a hurtful word and tie a funny punch line around it, we need to worry about the fallout. That’s why we’re asking you today to think about the R-word, and the impact it has on the people around you, including our children. And we’d like you to consider a new R-word, RESPECT.

On behalf of our children, we thank you for reading, and for your thoughtfulness

Written By: Nancy Reader copied off of Downsyn.com

Something I've been thinking about for awhile

I've been thinking a lot of an experience I had just after the birth of Sadie. Three of my friends came to visit me in the hospital. They all sat at the end of my bed admiring Sadie and looking forward to the births of two of their children in the following few weeks. I felt the time was right and I just blurted out, "She has Down Syndrome". What happened next has been one of the best lessons I have ever experienced.

My friend Kay, who had 3 children and was expecting her 4 in the next two weeks and who grew up with two deaf parents, exclaimed, "Oh, she's so cute... doesn't she have the cutiest toes? It looks like she is giving us a peace sign, " (because of the big gap). She just kept talking and talking about everything... I wondered if she had even heard the news I had just given her.

My friend Alison, who was expecting her first child the next month, sat there with a with a deer caught in headlights look. I don't think she said another word and I was sure she was lost in thoughts of, "if Kari didn't know she was going to have a kid with ds... what about ME?"

And then there was my sweet little friend Ayumi she sat there with tears in her eyes, got up and hugged me and started asking questions about what was next and about her health.

Everyone had a different reaction. I believe those reactions were all born from different experiences they had in life. Each had different upringings and and different personalities. All three were there in the room with me at the same time hearing the same things; but, each of them heard it differently. Kay lived around disabled people all her life. She knew that things would be just fine. She was there to celebrate a new life. Alison was newly married, expecting her first child. They were perfect and nothing seriously life altering had ever happened to her. Ayumi, she grew up in Japan. She grew up in a society where people with disabilities are hidden, killed or shipped away.

I learned that day that I could never control how others reacted. I needed to look beyond their reaction and wonder... why do they think that way? Now today, when we are out and about, I often see how people react to Sadie. Sometimes they turn their heads. Sometimes they look at me with pity. But most of the time, they smile. They see how happy we are. They see the joy and love Sadie brings to our family.

I can't control how others feel. The only thing I can control is my own thoughts and emotions. I can however, hope that maybe as we fully accept and rejoice in our litte ones others will see their beauty and worth. And if not- it won't change how I feel one bit!!!

My Cat Was Shot!

I haven't posted this yet because it has been really hard on our family. I think it is why I have gone kinda crazy manic (not that I'm bi-polar- but I feel like it)

My cat Ella was shot by a bb gun last Thursday July 17. My neighbor brought her to us and said she had found her and that Ella wasn't putting any weight on her leg. We thought maybe a dog got her because she thinks she can just play around with them.

She ended up with a bb that chipped the bone and cracked it all the way down. They had to do surgery and put in 6 pins to prevent it from breaking to pieces. Besides two surgeries, lots of medications, weekly re-check visits- the worst part is she is going to be crate bound for 6 weeks and under house arrest for 60 days. This cat loves to go in and out and visit. I hope she doesn't get depressed.

Some people have asked me if I know who did it. NO, but my neighbor has a few ideas... and she's out to get them. Unfortunately, it has caused me to question people and be leary of them. I think that is sad. These are people I live with- who share a space with our family. Anyway, I am hoping it was some goofy teenage boy (nothing against boys) that didn't realize the consequences of his actions. ie- the pain, cost and how it has affected the girls.

Just some background- Last year we found Ella in Palm Springs at our house. She lived under the shed and was starving to death. The rest of her litter and mama had been taken to the animal society. I'm not much of an animal person- mostly because they poop- but I was talked into "saving this cat". It was long before I found out she was the most loving, sweet, kind kitty ever! She is determined to have me meet all of my neighbors... because there is hardly a week without someone calling me and telling me she is 1) sleeping with them on the couch 2) out playing with their dogs 3) following their kids home from school or 4) sleeping in their bed! I've even had one call that said you better come get your cat or my neighbor will steal her.

Some of the neighbors even suggested we have a BBQ block party to raise money to go toward the $5,000 it is going to cost us to cover all this (I would never do that- but it is kinda funny they would suggest it) After we brought her home my next door neighbor came over and cried over her crate. I told her that if I ever break my leg she better cry over my bed or I'm gonna get some kind of complex.

Anyway, please pray Ella will heal quickly and not get depressed!!

Our Friend Kennedy

This is our friend Kennedy who is one serious trooper. Besides having to live without Daddy (he's serving our country) she has ds, leukemia and AAI. Look here for more about this sweet little girl and her amazing mommy!!

Please excuse the video- I don't know how to get a smaller version- unless someone can tell me!!

Photo and video editing at www.OneTrueMedia.com

There's a Party in My Tummy!! Yeah!

We love, love, love Yo Gabba Gabba! Sadie knows every word to this song- would make her speech therapist proud. Infact, Sadie knows almost every song on Yo Gabba Gabba. She and Daddy sit on the computer- You Tube for hours and sing. Plus, Parker was nice to give her the whole season 1 DVD set. Everyday when she gets home, "Yo Gabba Gabba, Gabba Gabba Yo Please!!"

So, for all you guys who keep asking.. "What's the deal with Yo Gabba Gabba"- you tell me... isn't this the coolest???

Church Bulletin Bloopers

Some of these are hiliarious!!!

Bertha Belch, a missionary from Africa, will be speaking tonight at Calvary Methodist. Come hear Bertha Belch all the way from Africa.

The sermon this morning: "Jesus Walks on the Water." The sermon tonight: "Searching for Jesus."

Our youth basketball team is back in action Wednesday at 8 PM in the recreation hall. Come out and watch us kill Christ the King.

Ladies, don't forget the rummage sale. It's a chance to get rid of those things not worth keeping around the house. Don't forget your husbands.

The peacemaking meeting scheduled for today has been canceled due to a conflict.

Remember in prayer the many who are sick of our community. Smile at someone who is hard to love. Say "Hell" to someone who doesn't care much about you.

Don't let worry kill you off - let the Church help.

Miss Charlene Mason sang "I will not pass this way again," giving obvious pleasure to the congregation.

For those of you who have children and don't know it, we have a nursery downstairs.

Next Thursday there will be tryouts for the choir. They need all the help they can get.

Barbara remains in the hospital and needs blood donors for more transfusions She is also having trouble sleeping and requests tapes of Pastor Jack's sermons.

A bean supper will be held on Tuesday evening in the church hall. Music will follow.

At the evening service tonight, the sermon topic will be "What Is Hell?" Come early and listen to our choir practice.

Eight new choir robes are currently needed due to the addition of several new members and to the deterioration of some older ones.

The ladies of the Church have cast off clothing of every kind. They may be seen in the basement on Friday afternoon.

Ladies Bible Study will be held Thursday morning at 10 AM. All ladies are invited to lunch in the Fellowship Hall after the B. S. is done.

The pastor would appreciate it if the ladies of the congregation would lend him their electric girdles for the pancake breakfast next Sunday.

Low Self Esteem Support Group will meet Thursday at 7 PM. Please use the back door.

The eighth-graders will be presenting Shakespeare's Hamlet in the Church basement Friday at 7 PM. The congregation is invited to attend this tragedy.

Weight Watchers will meet at 7 PM at the First Presbyterian Church. Please use large double door at the side entrance.

Wordless Wednesday- on Thursday????

Since it's not really Wednesday-- I can use words!! ;) I posted these pictures yesterday and had someone tell me they worked with criminals that might want to use these pictures if I didn't sticker them. That scared the crud out of me. I'm still new to this so I immediately took the pictures down until I could fix them. I feel better about them... but I have to admit- the stickers kinda take away from the cuteness. Anyway- enjoy!!!

Our First Wordless Wednesday- Take 2

Hermie, Jack Lord, Ronnie or Just My Bubba?

So the other day a friend from church said he thought Scott looked like Hermie on "Rudolph The Red-nosed Reindeer".



Hey replied with a quick, "Thank you, but I've always thought I resembled more of a Jack Lord!"



I'm not sure... I think he's just my bubba- although I have thought he looked a little like Ronnie Regan at times!






What do you think???

Sadie's SuperCrew!!

Ok, so I have had the hardest time trying to narrow down a name for our team. Last year we just went by "Teague Tribe" (which is our last name).

Some of our ideas have been

Sadie's Stars
Sadie Bug Picnic (my dh's fav)
My Moshish (another dh fav)
Sadie's soldiers

Anyway, none of them have worked. So, as many of you know DANCE is a huge part of our family life. Everyday has something to do with dance Sadie has grown up at the dance studio and really has a kinship with music. We watch every dance reality show and lately- been lovin' "American's Next Dance Crew". Love, love, love it!!!!!!

She was watching it a couple of weeks ago and she gets groovin and yelling and cheering for the different teams. Her absolute favorite is the "SuperCr3w". Whenever they are done she jumps up and starts to flash her "SuperCr3w" gang/ group sign. It is the funniest thing.

Soooooo... next years name (with their permission of course) is going to be......

Sadie's SuperCrew

I'll link the Buddy Walk page as soon as I figure out one thing!

Our Friend Julie-la-la and Our Favorite Show Yo Gabba Gabba

I shared this with some of you last month- but I never posted it on my blog. This is our friend Julia on Yo Gabba Gabba (our favorite show)- she is a blast!!! Oh, and for those of you watching it with little kids on your lap- beware and turn down the sound in the last few seconds!!



P.S. Kim, I feel like I blog about Julia as much as my own kids- can I make her a honorary Teague????

The Many Faces of Sadie

Have you ever gone to download some pictures and realized the kids were playing with the camera? This is a regular occurrence in our home. I've found some pretty funky things (ie- bathroom signs, a toe, nostrils, etc)... but the other day they must have had a little photo session with Sadie. I almost peed my pants seeing all the things they made her do- so I thought I would share some. There must have been a hundred pictures- so I just chose some of them in the same clothing- except the last two.

Everyday after getting dressed, Sadie runs into the office and poses for Scott.


I love the way her feet are up in the back!


Her American Idol pose


Behind the back


Someone commented to me about Sadie always having a big smile in her pictures... I think I just love that big grin so I always show those!


Who me??


This has to be a copy of Madison's "model pose"


Yeah!


I'm tired... can we stop??


Hello fans!


Kisses!

Help Raina- in Xander's name!!

Found this on one of the Downsyn.com members website. Sounds cool and a great way to help a little one!!

Anyone want a Blackberry Curve???????

I am giving away my Blackberry Curve. It is in excellent condition....I've had it less than 6 months and always carried it in it's case. It works with a T-Mobile SIM card(and I'm sure it can be unlocked for other carriers). When we changed cell phone providers, I decided to downgrade to something cheaper. I sold my husband's identical phone on ebay in less than 5 minutes for $170. I decided to give mine away instead. So, here's the deal:

On July 27th, I will pick my Xander up out of his bed, kiss his chubby little cheek.....and thank the Lord for putting him in my arms one year ago. To honor that moment one year ago, I am auctioning off my Blackberry Curve with every penny of the money raised to go into the grant fund for Raina, who is waiting in Bulgaria. Raina, like Xander, has Down Syndrome and clubbed feet. She is destined to live her life confined to a crib unless a family takes a leap of faith and adopts her into their family.

So, here's how this is going to work. There is a Chip In widget over on the side of my blog. A $5 donation made through that account will enter your name in the drawing. You can enter as many times as you want....each entry requires $5. The auction will end on July 27th and Xander will draw the winner himself. Every penny of the money in the chip-in account will go to Raina.....and someone will get my Blackberry Curve. You can keep it, resell it yourself....whatever you want to do with it. My intention is to get some money in this little girl's grant fund.

If you are reading this and you blog, PLEASE mention this on your blog. You can even put the widget on your blog too. You can get the code here. Some of you that read this get hundreds of readers a day on your blog. My prayer is to raise at least $500 for Raina's grant. That's going to take 100 entries. My husband thinks I'm crazy and I'm going to give my Blackberry away for like $20. Help me prove him wrong and raise some money for this little angel who's waiting on a mommy and daddy to call her own!!!!

Here's the website!!!
http://chroniclesofhousehold6.blogspot.com/2008/07/anyone-want-blackberry-curve.html

Sadie's Summer Speech

I saw Sadie's speech teacher today and had to tell her the great accomplishments she has made in speech this summer... this is where I chuckle- cuz, the other day when she wanted to swim and I told her no- she gave me a dirty look and said, "AWE MAN, YOU RUDE!"

Now she's been saying 5-8 word sentences for a long time now- but her tone and attitude have grown immensely this summer!!!

My Blog's New Look!

Lovin' my new blog look! I've been so jealous of all the cute blogs out there and haven't been able to figure out anything more than the generic layouts from blogspot. So, last night while browsing some other blogs- I saw a blog background from http://www.thecutestblogontheblock.com/. They are so cute!!! Hence the name. Well, I'm back to blogging- good therapy and alternative to TV (since I don't get my say anymore)!

Prayer Warrior

Last night I had another night of insomnia and found a blog that talked about a little boy with ds she had signed up to pray for through Reese's Rainbow. So, I quickly e-mailed the coordinator and asked for our own little one to pray for. She e-mailed back today.

Hi Kari,

We would love to have your family participate in our Prayer Warrior ministry.

You have been matched with Olga in Ukraine! Olga is a beautiful little girl with dark hair and eyes who is reportedly quite high functioning. She desperately needs prayer as she is already 4 years old and will be transferred to the institution soon. We are unable to send pictures through e-mail as per the laws of Ukraine, but a welcome packet will be sent to your home address shortly with a picture of Olga, Reece's Rainbow magnet, and a bookmark.

Thank you so much for lifting Olga's daily needs up, for lifting up her future family, and for lifting up the ministry of Reece's Rainbow.

God Bless,
Kelly

Please help us pray for Olga. If you would like to pray for your own little one (free of charge) you can contact: Kelly Shamsey at kshamsey@verizon.net

Sweet or/and Sour???

When Sadie was first born everyone would comment on how kids with ds are always so "sweet and kind". Well, I've since learned that there is another face to ds and Sadie has fully embraced the "stubborn" part of her extra chromosome!

However, she knows how to work it. While on a trip to Temple Square she decided she wanted no part of what our group was doing. When I wouldn't cave to her demands she sat down and pouted. I'm not kidding when I say she had a full on "ds pout". I thought I could capture her "naughtiness" so I whipped out the camera and took a shot....

this is what I caught- needless to say, she knows how to turn on the charm when needed!!

4th of July

We were in Utah during the 4th and Melanie, Shane & Blake invited us over for a BBQ and to watch the fireworks from Thanksgiving Point. Their house is beautiful!! I had a horrible headache the whole day and barely made it... so I forgot to take pictures until baby Blake was already asleep :(

Madison, Kiersten & Brenna in the "Big Girl Shirts"

Madison (who wasn't really in a group- just floating from one group to another) and Hannah, Shelby, Sadie and Julia in the "Hello Kitty- little girl shirts"

Madison "moose"

Julie-la-la- she somehow ended up with the "momma & daddie 4th headwear"

Sadie with one of her favorite guys- Shane

Sadie and her favorite guy- Daddy

I'm bummed I didn't get Melanie, Kim and I in our "4th headwear" and little Blake before he slept through all those fireworks!!

Madison & Sadie

Two peas in a pod.


I guess I now know where Sadie gets "IT"!