Sunday, March 21, 2010

March 21st

Today is World Down Syndrome Day....let's celebrate!!

In case your wondering why today is World Down Syndrome Day....Down syndrome people have an extra 21st chromosome. So they have 3 21st chromosomes. March is the 3rd month of the year and it's the 21st of March. Did you follow?

Celebrate today. I think I will go give my little boy a big hug and kiss.




I found this on another fellow blogger who has a child with Down syndrome (babymatthew.wordpress.com). I thought she did a great job explaining Down syndrome. I did change the names of her son to mine.

"Down syndrome was named after Dr. John Langdon Down, who first described the condition. The correct terminology is just that: Down syndrome. Not Down’s, or Down’s Syndrome, because Dr. Down did not have the condition (so we do not use the possessive form,) and “syndrome” is not capitalized because it is not a proper noun. You may also see Down syndrome abbreviated online as DS or Ds.

Down syndrome is the most common chromosomal anomaly, occurring in approximately 1 in 733 births in the US. However, as common as it is, there are less and less babies being born with the condition, because about 92-93% of mothers who receive a prenatal diagnosis of Ds choose to abort the baby. This comes to about 65,000+ babies aborted each year due to a prenatal diagnosis. I can’t tell you how much it saddens me that so many lives are lost. (I totally agree with her on this. I am amazed at how many people abort babies with Down syndrome. My life would not be fulfilled if I didn't have Kyler in it) I am sad not only for the babies, but also for the parents who are missing out on having an amazing child. And, I am sad for Kyler, who will have less friends who are like him. With fewer people having the condition, others will know less about it, there will be fewer resources for him and less research done about Ds.

When speaking about someone with Down syndrome (or really any other disability), parents and individuals with the condition prefer it if you put the person first. For example, “Kyler has Down syndrome.” We would never say, “Our Down syndrome son,” because that lets the condition define him. By now, you should know that Down syndrome definitely does not define our son, nor does it define any other person who has an extra 21st chromosome. Each individual is just that . . . an individual, which is why we also avoid making “blanket” statements about people with Down syndrome. Statements such as “They are always so happy,” are not only untrue, but offensive because they lump everyone with the condition into one category. To be safe, just avoid statements that start with “They are . . . “. I’ve come to really dislike the royal “they.” Are we too picky? Too sensitive? I don’t think so. As parents, we have to protect and stand up for our children. Words are powerful, so we need to be careful how we use them.

By the way, there are over 200 families on a waiting list, wanting to adopt a child with Down syndrome. If you think these children are not wanted, you are very, very wrong. There are families waiting to welcome and love a little one with an extra chromosome."

Well said Amy. Thanks.

Friday, March 19, 2010

Making Baby Big steps...

I had Kyler's annual evaluation IEP meeting at his school the other day. On one of his goals the PT had written was: Kyler will learn how to safely access the playground equipment. I told her that he had already met that goal. What do you think?
I must admit, last year I would get nervous every time Kyler would climb up this thing. Look how tall it is, you can tell in one picture because their is an adult standing next to it. He has yet to fall (knock on wood). He concentrates on what he is doing and he climbs up this thing over and over again. Then he climbs another ladder to get to the highest slide at the park. Zooms down the slide and starts all over again.
He swings with the best of them. He LOVES to swing. He holds on all by himself and I push him as high as I can...underdog and all. He LOVES it.

Here are some pics of him enjoying being able to ride his bike. I still can't tell you how happy and excited I am that he, Kyler, can pedal the bike all by himself. He is doing great and I couldn't be more proud.

Sunday, March 7, 2010

Sunday, March 7, 2010

HUGE NEWS!!

Seriously this is PHENOMENAL news.

Let me preface this by saying that in my mind this comes only second to walking. We have been working with Kyler on pedaling a bike FOREVER. Last summer I spent countless hours trying to help him learn how to pedal. His physical therapist has continued to spend countless hours trying to teach him how to pedal a bike. Yesterday, March 6 2010, he did it. We went outside since it was finally nice and he actually pedaled his little tricycle. He needed a lot of help at first but each time we've done it since he just keeps getting better. He likes to show off his new skill. He was SO excited to show Ryan when he got home from work. Then this morning we went over and showed the neighbors. Surprisingly, EVERYBODY is equally excited about it as I am. Maybe that's because I am still like squealing with delight every time he does it. It is so cute. His little legs are finally strong enough. He has figured out how to make his muscles work together to actually get the bike to move. It's funny though, when he gets stuck he moves his entire body but his legs to try to get going again. It's still a work in progress but DEFINITE steps have been made. Next task: Learning to steer the bike.