A Great Christmas

This is Stephen modeling one of his shirts and set of wristbands he got for Christmas.  This was by far his most favorite shirt.  He's been asking for this shirt for months...  Everytime I was on the computer, he would come over and asked to look at it online.  Both him and his brother had a wonderful Christmas this year.  We were alot better mentally as a family this year, last year we didn't know if my husband would have a job one week after Christmas, but this has been a year of overtime as he works for General Motors and has been one of the lucky ones.

We have been blessed this past year.  Their grandpa has had multiple hospitalizations, including two times for pneumonia and once for pacemaker surgery on October 19, 2009.   We celebrated my sister's birthday in the waiting room while they were operating on dad.  That's a birthday she'll never forget!  Grandpa had a stint in rehab so he could strenghten his walking skills after his last hospitalization.  Now he is back home with us, back to being mobile the way he was before the surgery, which helps us out tremendously.  If he couldn't get around on his own, he wouldn't be able to keep living with us.  Thank God for those precious miracles!

Have a blessed and wonderful 2010!

Merry Christmas 2009

We wish you all a very Merry Christmas and a safe, warm and loving 2010!   The pics are of our tree and presents before the boys see them - and during the opening of the presents!  Happy Birthday Jesus!

Bowling Fun

Our local Down Syndrome support group sponsored a bowling party a couple of nights ago for the teens.  My son had a blast!  Here are some pics of him having a great time! He loves to bowl and bowls on a league with other people with special needs.  He doesn't do too bad!

Happy Thanksgiving

We've already had our wonderful turkey dinner, and now the boys, dad and Grandma are playing cards.

I hope everyone had a wonderful Thanksgiving today!

Imagination and the WWE

Stephen has quite an imagination, thanks to his younger brother who has introduced him to a whole world of things!  One of them is the World Wrestling Entertainment, WWE for short...   He has several wrestling rings and figures...  This is what I found one day when I walked in his room. 

Speech about the Dangerous Myths of Down Syndrome

The following is a speech prepared by the 14 year old daughter of one of my friends that lives in Texas.  Such insight for a 14 year old!

A Dangerous Mythology by Riley Moreno

Webster's Dictionary defines a 'myth' as a popular belief or tradition that has grown up around something or someone; an unfounded or false notion.

Throughout history, people all over the world have made up myths to explain things they didn't understand or that frightened them. When we --modern, civilized Americans-- come across these myths in literature, they strike us as childish and illogical. Yet ironically, we cling to many modern myths without realizing it.

Hello. My name is Riley Moreno, and I would like to thank you for the opportunity to speak to you today. Today I am going to counter three myths about Down syndrome. These myths are: first, that people with Down syndrome cannot form meaningful relationships; second, that people with Down syndrome can't grow and learn; and third, that people with Down syndrome can't contribute to society.

When I say the words "Down syndrome,' what do you think about first? It might be a set of facial features, or a certain way of talking. It might be the words "mental retardation." You might know someone with Downs, and might remember their warm smile and friendly nature.

Most myths are harmless. But myths about Down syndrome are deadly. Each year, 90% of the parents who find out through prenatal testing that their baby will be born with Downs end up believing these myths and choosing abortion.

Think about it: our society condones--even encourages-- the extermination of a whole group of people based on their genetic make-up, due to a genetic variation that is "neither fatal nor contagious, but merely undesirable."* The media calls it a cure. But when Hitler did this, it was called genocide.

If you have heard me speak about Down syndrome before, you've probably heard me talk about my little brother. I've talked to many people about what a blessing he has been to me and our family, and how I've come to realize Down syndrome is just another kind of normal.

But today, I'm going to take a chance. I'm going to get bold. In the past, I've spoken about the 90% abortion rate. Today, I'm going to lay the blame on a society that has decided to take the easy way out.

What does this society find so threatening about Down syndrome? I'll tell you what I think it is: I think it's because we live in a desposable society, where things that are seen as broken are discarded. The world doesn't see people with Downs as different, but as broken, so they throw them away. Just like a broken shovel or pencil. Get rid of the broken one. It is worthless. It is without value.

But these aren't things: they aren't tools or pencils. They are human beings.

We can easily determine the value of a pencil. I can buy a whole box of them at Target for about $2. But how do you determine the value of a person? I'll tell you how the world determines it. the world determines value based on some idea of perfection. The closer you are to that ideal, the more value you have.

My concept of the value of a human being comes from a divine Creator. But realizing that the whole world doesn't agree with me, let me propose some more concrete criteria.

How do we decide the value of a person? Could we base it, in part, on relationships? Women are often told that a child with Downs won't be able to form meaningful relationships. THIS IS THE FIRST MYTH THAT I WOULD LIKE TO CHALLENGE.

Let me tell you the story of a young man named Sterling. He lives at a ranch for people with cognitive disabilities like Down syndrome. He has tons of friends on the ranch, and he loves working with the animals. But Sterling has one special relationship. He's engaged. He met his fiancee shortly after he was born, when she was already a year old. As he tells it, he likes older women! Sterling can't wait until the day that he and the love of his life stand up in church, in front of their families, their friends, an God, to become husband and wife.

NOW FOR MYTH NUMBER 2. How about personal growth? That's certainly something society places a high value on. Can a person with limited intellectual abilities really grow and learn? I wish I could introduce you to Lisa Smith, a young woman with Down syndrome that goes to my church. She wanted more than anything else to sing in the choir, but she knew that her voice wasn't good enough. So Lisa learned American Sign Language, and started participating in the music ministry in that way. That small step led to a career doing sign interpretation for popular Christian singer Sandi Patti on the Women of Faith tour. Lisa has even performed on national television!

So we've established that people with Downs can have meaningful relationships and that they can learn and grow. That's fine, but we live in a "what-have-you-done-for-me-lately" society. Can these individuals contribute anything to the world around them?

I can't tell you how many stories I've heard from people, telling me how their lives were blessed by knowing someone with Downs. At a garage sale my family organized to raise money for Down syndrome awareness, we met a man named Henry. Henry worked for the Mexia State School, and he organized a choir made up of residents. While he was telling us his story, Henry started to cry. He told us that he had started out thinking about what a great thing HE was doing for the residents. But what he came to understand was that THEY had done much more for him. They had taught him lessons about faith and joy, about being who God made you and being your best. I'd call that a contribution.

I hope you will remember the the truths that I have spoken about today: That people with Down syndrome DO have meaningful relationships; that they DO learn and grow; and that they CAN contribute to society.

Until we stand up and declare war on the easy button; until we--and by we, I include myself-- say that a little hardship in life is what built the character of the generations before us, and that it should be embraced and cherished; until we realize that life isn't always about smooth sailing, that sometimes it's wind and waves and rapids, and that's what makes it an adventure; until that time, the myth will grow. It will grow, and continue to destroy lives, and rob the world of a precious, underappreciated resource: people with Down syndrome.

*Archbishop Chaput, Denver

 

The International Down Syndrome Coalition for Life

I found about this wonderful site today! 

About IDSC

The International Down Syndrome Coalition For Life began after a group of parents and professionals saw a need for a pro life group in the Down syndrome community.  We are a resource to those who are new to the world of Down syndrome.  We  offer support to  parents and professionals.  We are not here to dispense medical advice.   We recommend you find qualified medical care.

Our Mission Statement:
IDSC For Life is dedicated to promoting the dignity and respect for all individuals with Down syndrome, from conception and throughout life. We are a coalition that has worldwide representation. Our mission is to celebrate and enhance the lives of individuals with Down syndrome, as well as to ensure fair and accurate representation in the case of prenatal diagnosis. IDSC For Life will accomplish this mission by educating medical staff and families with a prenatal diagnosis as well as  offering current and up to date information.
IDSC does not have 501c3 status

Contact us: IDSCoalition-owner@yahoogroups.com

For those in favor of genetic testing

For those people that are in favor of genetic testing, I say the following:

"I wish genetic testing to reveal birth defects would stop - there are many "normal" kids that lose their lives because of false positives, and many BEAUTIFUL children with Down Syndrome are destroyed. I encourage people that if they get tested, and have a positive test come back, PLEASE run, and not walk, to an organization in your area and get all the information you can. Meet with people who have Down Syndrome. It is NOT the death sentence for you that you think it is. These people have wonderful lives because they ARE wonderful! I have a 17 year old son who can run circles around any "normal" teen his age. He gives lots of love, AND he does so many things to help around the house, it could make your head spin! Everybody that works with him, loves him. You would deny your child that just because he would happen to be born with Down Syndrome? What if your parents aborted you because they knew you would have brown eyes and not blue? Your child does not choose to have Down Syndrome, but that does NOT make him any less of a human being. Matter of fact, it makes them a BETTER human being. Ask anybody that has a child with Down Syndrome, I'm positive they will tell you the same thing!"

Halloween 2009

Friday Stephen was in a play at school - He was the pirate on the left. Another picture of him is at the reception after the play. The other boy pictured with him is his friend Billy who is in his class. The last picture is of him passing out candy to the trick or treaters! He loves Halloween, and so do I!

SLEEPOVER!!!

Stephen got invited to his first sleepover where the person was not a relative! His friend from school invited him. Here's some pics! I've also added a few pics of the historic town - Ft. Leavenworth, KS!

It's that time of year again!

Stephen likes this time of year - he knows when he sees pumpkins, it means he will be seeing ghosts and going trick or treating with his daddy! Here's some random pics we took today!

I wanted to thank the football coach and the lady that made the First Downs for Down Syndrome poster at my son's school. The coach has made my son and another boy in his class that both have DS honorary captains on the football team and they do the coin toss at all the home games! I ordered some special cookies for them and the boys delivered them during school! The coach and the lady were shocked and happy! The boys got high fives and hugs out of the deal!!! One good turn deserves another, I always say! Here's some pics of the cookies!

I Have A Voice

What a wonderful video to watch!

Sometimes it's the simple things

Today we went shopping at Target for a friend's upcoming birthday. After we were done shopping, Stephen wanted to sit in the circle out in front. He's fascinated by that circle. Sometimes it is the little things in life that brings us the most pleasure! You can learn alot from Stephen. You can learn to enjoy the time you are given on Earth. Sometimes I have to slow down so I can remember that lesson. Thank you Stephen. I love you.

Hot off the Press!

Here's a newspaper article about First Downs for Down Syndrome and my son's high school. It has a great picture of the kids in his class that participated in the event!

First Downs for Down Syndrome

Stephen's school is participating in First Downs for Down Syndrome this year.

The History of First Downs

For Down Syndrome

The concept of First Downs for Down Syndrome was created by Gene Stallings, best known for his outstanding football coaching career. Gene was assistant coach at Texas A&M, Alabama, and with the NFL’s Dallas Cowboys. He went onto head coaching duties at Texas A&M, the St. Louis and Phoenix Cardinals and finally, concluded his coaching career as head coach at Alabama.

In his book, Another Season: A Coach’s Story of Raising an Exceptional Son, Gene tells a personal story about winning national championships…and about raising and loving a son born with Down Syndrome. Gene started the FDFDS concept to raise funds and awareness.

In the early ‘90s, local parents learned about the First Downs concept of teaming professional football players with fundraising for Down Syndrome organizations, and thought it was a perfect idea for partnering with the Kansas City Chiefs.

The funds raised by FDFDS support two local organizations: the Down Syndrome Guild of Greater Kansas City—which provides education and support to individuals with Down Syndrome and their families; and the Down Syndrome Clinic at Children’s Mercy Hospital, a clinic that addresses the medical and therapeutic needs of children with Down Syndrome from birth through adolescence. FDFDS also provides significant funding for research taking place at Children’s Mercy Hospital that is exploring the link between Down Syndrome and leukemia.

There are hundreds of families in the Greater Kansas City area caring for a loved one with Down Syndrome. Without First Downs for Down Syndrome, these families would not have local access to vital medical, emotional, educational and support services.

FIRST DOWNS FOR DOWN SYNDROME'S MISSION

The mission of First Downs for Down Syndrome is to raise money for the Down Syndrome Guild, the Down Syndrome Clinic at Children’s Mercy Hospital and other Down Syndrome organizations; to raise awareness of Down Syndrome and the services of the Clinic and the Guild; and to create positive images of those with Down Syndrome.

ABOUT DOWN SYNDROME

Down Syndrome is the most commonly occurring genetic condition. One in every 800-1,000 live births, is a child with Down Syndrome, representing approximately 5,000 births per year in the United States. Today, Down Syndrome affects more than 350,000 people in the United States. It is one of the leading clinical causes of intellectual disability in the world.

All people with Down Syndrome have an extra, critical portion of the number 21 chromosome present in all, or some, of their cells. This additional genetic material alters the course of development and causes the characteristics associated with the syndrome.

There is a wide variation in the abilities, physical development, behavior and personalities of individuals with Down Syndrome. Each individual has their own unique personality, capabilities and talents.

With appropriate education, therapy, and social support, the majority of individuals with Down Syndrome can lead fulfilling and productive lives.

First Downs for Down Syndrome

This is a poster my son's school did to promote First Downs for Down Syndrome. It turned out pretty good!

Deanna Rose Children's Farmstead

I took the boys and grandpa to a place called Deanna Rose Children's Farmstead, named after Deanna Rose, an Overland Park, Kansas police officer killed in the line of duty. It is a huge petting zoo with several play areas for kids and picnic areas! It is an incredible place. It is free to go through, however they exist on donations! If you live in or travel through the Kansas City area, please go there. It is just as fun for adults as it is children! They are located at 138th & Switzer. We even found money while there and turned it in (because, of course, it wasn't ours) and we were afraid someone might not be able to buy snacks to eat or food for the animals.

Traveling Titanic Exhibit

This past Thursday night, we visited the Traveling Titanic Exhibit at The Legends Shopping Center in Kansas City, Kansas. It was free and it contained approximately 50 artifacts from the sunken vessel. I've visited the museum in Branson twice, and am in awe everytime I visit. My youngest son LOVES the Titanic. He watches the movie everytime it's on tv and he really enjoyed our visit to the museum two years ago. Here's a pic of the trailers the exhibit is touring in.

Happy Birthday to my angel on earth!!!

Happy 17th Birthday Stephen! We all love you!

Visiting Grandpa

Here's a picture of Stephen visiting Grandpa at the hospital! Grandpa has double pneumonia (both lungs)...

Need Help with Financial Planning and Special Needs Trusts?

If you are in the Kansas City are, or Las Vegas area, you are in luck. There is a wonderful organization called Special Needs Planning Center. Here's an excerpt from their website www.specialneedskc.com. They recently put on a seminar at my son's former school, the Lee Ann Britain Infant Development Center located at the Shawnee Mission Medical Center.

Special Needs Planning Center Blog To Distribute Information to Parents


Over the last five years The Special Needs Planning Center has been providing nearly 60 free educational workshops per year for parents of children with special needs. The goal has been to educate parents on the different issues that affect their children with special needs from their first IEP to planning for their care after the parents are gone.

In an effort to add to this and to allow The Center to provide more widespread education we are creating a new Special Needs Planning Center Blog. The new blog will be updated on two Monday's each month and provide parents access to updated regulations, planning tips and other valuable resources.

We'd also like to extend the invitation to parents and other providers to contribute. If you have topics you'd like to post and information you believe other parents will benefit from please submit the information via email to Heath at hburch@specialneedskc.com.

You can visit the blog and check for updates at www.specialneedsplanning.blogspot.com
Please contact us anytime with ideas, tips and resources we can provide to other parents.

Fourth of July Celebration

Every year, the City of Basehor has an old-fashioned Fourth of July Celebration, complete with parade. Please join us if you don't have anything else planned!

Prayer Warriors

I'm a prayer warrior, and I'm so excited about it! What is a prayer warrior? It is someone that signs up with www.reecesrainbow.com, who wants to say prayers for adoptive children awaiting homes with their forever families. This is something easy to do when you cannot adopt a child, but want to help out in some way! All you do is sign up and you are matched with a child, and they send you information in the mail, along with a picture of your child. My child happens to be in Eastern Europe, and she has the same name as my deceased mother, Claudia! When I found out the child's name was Claudia, I knew that I was doing this for God's glory! There are no coincidences where God is concerned! Everything happens for a reason. So please join me in saying prayers for this little girl, so she can find her forever home.

Claudia (30)

Girl Born March 5, 2004

SIGNIFICANT RISK, PLEASE ADOPT ME SOON!!

Claudia is a beautiful little girl with long brown hair and brown eyes. She wasn't real keen on saying "cheese" in her photo, but she is well loved and a happy girl. She was born with an oval window, but it may have closed on it's own. Claudia is very active and playful, high functioning, has many words, and is doing very well.

We are hopeful a family will come forward for Miss Claudia!

Contact Andrea directly for more information

I have $50 in my grant fund towards the cost of my adoption!

Help bring Alexander home to a wonderful home

Click on this link if you are looking to adopt a beautiful boy into your home.

http://presentslove.blogspot.com

Band of Angels

The following is a site that sells Calendars, t-shirts, jewelry, all benefit children with Special Needs. The calendars highlight children with Down Syndrome. I've bought several things from this company over the years and have never been disappointed. It is wonderful! www.bandofangels.com