Family room football

Gavin is a big football fan. He loves to play in the family room with anyone willing to follow his lead. And that's usually adoring sister #1. Ainsley. Neither one is too concerned with the actual rules, only the rule of taking turns and occasionally the rule about not rough-housing on the furniture.

I'm not sure if Ainsley enjoys football as much as she just loves playing with Gavin.

Jersey color doesn't matter much when neither one bothers with a shirt at all. The sides even change. One minute they play against one another, the next minute they are on the same team and playing against an invisible team that seems to tackle Gavin but never Ainsley.

And what good is a game without fans to cheer on both sides?

Love these games! And this post isn't so much about Down Syndrome as it is about how it's not always a "thing"; not always a factor in every part of our lives. Our kids love playing together and no one minds what the chromosome count is. Only whose turn it is to tackle whom.

Types of Down Syndrome

There are 3 types of Down Syndrome: Trisomy 21, Translocation, and Mosiac.

The National Down Syndrome Society explains them this way:

In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Normally, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent.

Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.

The two other types of Down syndrome are called mosaicism and translocation. Mosaicism occurs when nondisjunction of chromosome 21 takes place in one-but not all-of the initial cell divisions after fertilization. When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes and others containing 47. Those cells with 47 chromosomes contain an extra chromosome 21. Mosaicism accounts for about 1% of all cases of Down syndrome. Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome. However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess.

Translocation accounts for about 4% of all cases of Down syndrome. In translocation, part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome.

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

Ainsley has Translocation. This doesn't mean much, other than that she has a more unique form of DS. I've been asked several times if this means that her DS is "better" or "worse" than the typical Trisomy 21 diagnosis. From what the genetic counselors told us after she was born, it doesn't predict anything about Ainsley's ability to learn or function in society. It just means that she's that much more special--but we knew that already!!

But what about Gavin & Skylar?

When we got Ainsley's diagnosis, one of my first questions was "what will this mean for Gavin?" Later I wondered how and when to tell him. When will he notice that something is different? Adrian & I decided to leave it alone until he asks us about something he's noticed. The only thing he asked about were the names of his therapists. We explained that he didn't have therapists come to play with him when he was a baby.

One day as I was taking Gavin to Pre-K, he got upset that he wasn't going to be there with Miss Jane, Ainsley's PT, and that he wouldn't know what to work on with her. I explained that Miss Jane leaves notes about what they work on, and that we could read it together that evening. That was kind of the end of it for awhile.

Then on his 6th birthday, as we were planning to go to the Buddy Walk later that day, Gavin asked "What's Down Syndrome?" We explained that it changes the way Ainsley learns to do things, and that it may take longer for her to learn something but that she will learn to do everything that he can do. Honestly, it's not something that we talk much about.

On Life with Bubba, Chicky and Nika , Bethany explains:

Last year I attended a conference in which I was able to hear Dr. Brian Skotko do a sibling workshop. I just came across this list of great tips to remember when dealing with siblings of a child with special needs, as written by Sue Levine and Dr. Skotko ...

1. Be open and honest, explaining Down syndrome as early as possible. Encourage other children to ask questions; answer them on their level as honestly as possible. But don’t wait for siblings to askquestions. Bring up the topic routinely in conversation.

2. Allow brothers and sisters to express negative feelings. Acknowledge the fact that sometimes it is hard to be a brother or sister tosomeone with a disability And don’t expect siblings to be saints.

3. Recognize the difficult moments that brothers and sisters may be experiencing. As brothers and sisters grow up, they often begin to realize that not everyone in society shares their family’s beliefs and values. Recognize situations that may be potentially embarrassing or stressful and do what you can to help minimize the difficulty.

4. Limit caregiving responsibilities. Children need to be children. Allow them to be brothers and sisters, rather than becoming an extra parent.Your children with disabilities also benefit from having siblings rather than a family full of parents.

5. Recognize the individuality and uniqueness of each child in the family. Be sure to point out what makes your children special; they want to know that you notice them, too. Celebrate their accomplishments and schedule special time with each of your children.

6. Be fair. Listen to both sides of the story and be certain to make sure each child has responsibilities appropriate to their level of ability

7. Take advantage of supports for siblings. Both local and national groups have opportunities for siblings to meet each other. Such experiences are often validating.

8. Encourage parents to access support for themselves. When parents seek out support systems for themselves, they tend to be better equipped for the journey.


These are good guidelines for Adrian & I to keep in mind in the years to come. For now though, Gavin rarely mentions it and I think that's a good thing. Skylar isn't old enough to know much about it yet. To her, Ainsley is her older sister; the one who steals her toys, shares her sippy cup, and knows how to ask to watch Baby Signing Time.

Yes, Ainsley has DS. But she also has a great smile, an adorable laugh, a mischevious streak, and a hug that melts away a day's worries. And that's way more important than anything else.

Baby Signing Time

Best Buy is having a sale on the Baby Signing Time collections today:

Volumes 1-3 This is normally $59.98 and is on sale for $14.99

Volumes 4-7 This is normally $99.95 and is on sale for $14.99

Shhhh...don't tell Ainsley, but I picked up Volumes 4-7 for her Christmas present. Mimi Julie got her volumes 1-4 for her birthday this year. She's been watching them & learning signs very quickly. Her speech is delayed and these have been great! She is communicating with us a little more each day. These DVDs are her favorite thing to watch, especially while we're making dinner. The songs are catchy and most of the signs are pretty easy to pick up. (I know, we've already got one of those DVDs, but it was a package deal...so I guess I'll have a DVD to give away.)

Skylar & Gavin enjoy watching them, too. Gavin is always anxious to use the signs he's learned and practice with Ainsley. These aren't something that are made specifically for children with Down Syndrome, but they have helped our little lady a lot.

Hooray for football!

There was a story that was featured a couple weeks ago about a football player in Austin, Texas that scored a touchdown. The cool thing is that this player has Down Syndrome.

http://abcnews.go.com/US/video/down-syndrome-football-player-ike-ditzenberger-scores-touchdown-11797819

I don't know who I'm more proud of: Ike, his teammates, their opponents, or the coaches. Everybody worked together to help Ike fulfill a dream. His dream of scoring a touchdown is one more example of how people with Down Syndrome are more alike than different.

Hooray for football! And congratulations on the touchdown, Ike!!

Down Syndrome Pregnancy e-book

We found out a month before Ainsley was born that she had Down Syndrome. This was obviously pretty late in the pregnancy and had started a month before that. If I had the option, I wouldn't change the way that everything happened.

This website (http://downsyndromepregnancy.org/) is for anyone receiving a diagnosis of Down Syndrome for their baby or even for medical professionals. There is a free e-book available and it looks great!

There is a lot of information to process with this diagnosis, and it can sound very scary and overwhelming at the time. Ainsley is awesome, and we are so thankful for everything that she's brought to our lives. Adrian & I know that God moved in our lives and made us better people through her.

31 for 21!!

It's October, so it's time for 31 fo 21! For the next 31 days, I'm going to try to blog each day (big stretch for me, I know...) about our lives with Ainsley. There's so much more to Ainsley than her diagnosis of Down Syndrome.

So for the next month I'm going to make a real effort to share a glimpse into how "normal" our lives are. Or as normal as it is with 3 kids ages 6 & younger. But it is what it is, we love it, and I'm more than happy to share it with you. :)

If there is anything you would like to know, please leave a comment. I'm not an expert by any stretch of the imagination but I will do my best to find an answer. And I'll learn something new, too!