Friday, October 26, 2012

Heading to Missouri

We are on the plain headed to Missouri for the First Down for Down syndrome awareness!

Thursday, October 11, 2012

October Love

October has already brought so many things to our family! The DSAW Awareness walk happened (okay it was Sept. 30th, but close enough) and we should get a post with pictures up from it this weekend!
We also did away with baby bottles. Taylor has been using a sippy during the day and then right before bed having a bottle. The first night was rough and full of tears but in the end the sippy cup won the battle! She hasn’t used a baby bottle since and is even transitioning from a traditional sippy cup to one with a straw. Her physical therapist wants her to use the straw sippy cup as part of her speech therapy since it uses more muscles to drink from the straw.
We stopped feeding Taylor baby food the same weekend. I have always made all her baby food myself and the past couple months I have made it extremely chunky so she was already used to having to chew her food. Taylor has moved on to finger foods and loves it. So does Erwin by the way! He is on constant alert when she is sitting in her highchair waiting for the food that doesn’t make it to her mouth. Taylor’s (and Erwin’s favorite new foods include peanut butter and jelly sandwiches and pancakes.
We will end the month by flying to Missouri to walk at the Kansas City Down Syndrome Awareness Walk at Arrowhead Stadium. (Go Chiefs!) Our friends and family in Missouri have a team for Taylor called Taylor’s Angels!
Last but not least…Did you know that October is Down Syndrome Awareness Month? Well it is and here are 21 things you should know about Down syndrome! Thanks to http://sassysoutherngal.posterous.com/ for letting me borrow her awesome list and adding to it!
1.   Each individual with Down syndrome is unique. (Have you met Taylor? She is pretty awesome and unique!)
2.     Individuals with Down syndrome are not always happy. Many have a sweet disposition but they have the same range of feelings (glad, mad, sad, and happy) as individuals who do not have Down syndrome.  (So very true!)
3.     A 3rd copy of the 21st chromosome causes Down syndrome. 
4.     The medical name for Down syndrome is Trisomy 21.
5.     Down syndrome was given the name “Down” syndrome because Dr. Langdon Down was one of the first researchers to describe the genetic condition. 
6.     In the United States the correct term for Down syndrome is Down with a capital D and syndrome with a lower case s.  The D is capitalized because it is named after the person Dr. Down and that is his proper name.  It is not possessive “Down’s syndrome.”
7.     A person is a person first and has Down syndrome second. Therefore, you never call someone a Down’s child, Down’s person, etc. (This is one of my biggest hot buttons when people call Taylor Downs or say she is a Downs baby. Learn the lingo!)
8.     Down syndrome occurs at conception.
9.     Individuals with Down syndrome did nothing to cause their Down syndrome.
10. You cannot catch Down syndrome. It is not a disease like the common cold.
11. Individuals born with Down syndrome vary in their abilities and related medical issues. 
12. Almost 50 percent of babies born with Down syndrome will have some type of heart issues.  These issues range from very serious requiring surgery to issues that self-correct. (We are so grateful that Taylor was not born with any heart or major health issues.)
13. Another common characteristic of babies with Down syndrome is lower muscle tone.  This may cause them to take longer to sit up, crawl, or walk and may cause them to tire more easily. (But it does make them great at baby yoga!)
14. Individuals with Down syndrome want to have friends and do the same kinds of things that other children/adults their age want to do.
15. With proper supports individuals with Down syndrome can and should be included in general education classrooms and extracurricular activities such as dance, soccer, karate, cheerleading and acting. (Taylor is already in swimming!)
16. Many individuals with Down syndrome are getting married.  (This makes my heart smile.)
17. Individuals with Down syndrome are living independently while others live independently with supports.  Some even own their own homes.
18. It is outdated and disrespectful to say someone with Down syndrome is the “R-word.”  The preferred language is that a person with Down syndrome has an intellectual disability. (Don’t say it. Ever.)
19. Many individuals with Down syndrome and other intellectual disabilities are going to college. (We need to start Taylor’s college fund now!)
20. Individuals with Down syndrome have the same rights as all other people. They have dreams, goals and aspirations.  They deserve to be treated with dignity and respect just like everyone else. 
21. It would be great if you would get to know someone with Down syndrome! (If you have questions about Down syndrome let us know! We would be happy to answer any that we are able to!)

Monday, October 1, 2012

A Blue Rose

I was just forwarded this from my Godmother.

A Blue Rose
Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.
I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."
It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"
"My name is Denny and I'm shopping with my mother," he responded proudly.
"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."
"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?"
"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.
"You're fifteen-years-old Denny; now be a good boy and let the man pass by."
I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.
Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.
I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.
She was silent for a second, then with a tear in her eye she asked, "Who are you?"
Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."
She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.
May I suggest, the next time you see a BLUE ROSE , whichever differences that person may have, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece , nephew or any other family member. What a difference a moment can mean to that person or their family.
From an old dandelion! Live simply. Love generously. Care deeply. Speak kindly. Leave the rest up to God!
"People will forget what you said, People will forget what you did, but people will never forget how you made them feel!"