Thursday, October 28, 2010

21 Things about Ainsley

1. If you ask her what her name is, she tries to say "Bean." We've called her Beanie since before she was born.

2. Ainsley is a Daddy's girl. She will rush the front door when he comes in, yelling "Daaaaa!!" and demanding hugs.

3. Her favorite food is yogurt. Any flavor. She will open the fridge herself, get a yogurt out, then go get a spoon. So glad she can't open them yet!

4. A very close second favorite is cheese.

5. Ainsley knows how to turn on the iPod, unlock it, and go play "her" games.

6. Her cheeks get very, very dry as soon as the humidity starts getting low. Before the weather gets cold, she'll already have cheeks that look chapped. We've tried a crazy number of lotions & creams trying to find one that works well without multiple daily applications or greasy cheeks.

7. Beanie doesn't like having her hair done each morning, but seems to really enjoy it when people tell her how nice she looks. She understands compliments and loves to get them!

8. "Baby Signing Time" is her favorite thing to watch and she'll ask for it by signing it.

9. We're still teaching her how to drink out of a regular cup. She likes to put her tongue on the top and that can be pretty messy.

10. She was born with an AV Canal defect. Her little heart was repaired October 26, 2007, a day before she was 3-months old. When that anniversary came & went, and we didn't realize until the next day, it was an amazing feeling to not have to worry about her heart anymore. What a blessing!!

11. After baths, I like to turn on the radio & have a dance party with the kiddos. Ainsley is a great dancer and loves to show us her moves. And then she gets upset when she has to stop so that I can do her hair.

12. She likes to brush her teeth. On. Her. Own. Do NOT try to take the first turn or she'll get mad. So she brushes first, then we follow up.

13. While we're talking about baths, she HATES it when I have to get her hair wet. Even when we get her to tilt her head back so the water doesn't run in her face, she still gets mad and tries to climb out.

14. She's allergic to egg whites and tree nuts.

15. Beanie loves spicy food. Buffalo chicken pizza is one of her favorites.

16. She likes to go to bed with a book. She'll crawl up onto the sofa with a book & sit there and look at each page. We love that she loves to "read" already!

17. Bean knows her schedule at school and notices if something changes. She receives PT, OT, and Speech services. Luckily, she doesn't miss much in her classroom. And she's doing soooo well in school!

18. She wears a 3T or 4T top, depending on the length. Her pants are 24 month or 2T. Shoes are 7W.

19. Ainsley likes to play with puzzles, Little People, a mini tool bench, and tries to get to Gavin's Legos.

20. She does chores like feeding Abby, putting everyone's shoes away in the closet, and picking up the dirty clothes from the bathroom floor after their bath.

21. Ainsley is a local celebrity. Whenever we're out, people wave & tell her "Hi, Ainsley!" And these are sometimes people that we don't recognize. But we always knew that she's a pretty big deal!

Monday, October 25, 2010

Hooray for Parents!

For the past 2 months, Parents magazine has run two great stories about raising a child with Down Syndrome.

Read them here and here.

I follow Kelle's blog - it is one of my favorites! Nella is beautiful and so very, very loved, as is her sister Lainey. The link to Kelle's blog is to the real beginning of her story: Nella's birth story. If you've never read it, it's amazing and brings tears to my eyes each time I read it. Yes, I've read it several times.

Thank you to Parents magazine for featuring two positive stories about real families that are raising a child with Down Syndrome. Hooray for our beautiful children, no matter how many chromosomes they have!

Monday, October 18, 2010

Monica & David

Monica & David is a documentary showing on HBO about a wedding. Except the bride & groom both have Down Syndrome.

My mom DVR'd this for me, and I'm really looking forward to seeing it. Will keep you posted on how I liked it.

I've always prayed for God to have His hand on the children that will grow up to become my children's spouses. This gives me hope that there are other parents out there that will one day support their son's dream to marry Ainsley. As more children with Down Syndrome are included in society, supporting their dreams of love and marriage is part of that natural progression.

Saturday, October 16, 2010

Beautiful Anya

The Reece's Rainbow family is mourning the loss of a beautiful little girl that we knew as Anne Marie. Her real name was Anya and she was waiting for her forever family. She was in an orphanage, probably abandoned because of her diagnosis of Down Syndrome.

Her birthday was November 25, 2005. She was almost 5 years old. She spent most of her days in her crib. The workers at the orphanage wouldn't let her crawl or play, explaining that it was too hard on her heart. That poor little heart of hers never got the chance to know what it felt like to be loved by a mommy or daddy, brothers or sisters.

Anya was placed in a low-stimulation room. And that's where she stayed. To families that visited to pick up their angels that asked about her, the workers waved her off as if she wasn't worth their time.

She is now with her Heavenly Father that has more love for her than she's ever known. He will hold her close and give her the love that she was never shown here on Earth. Please pray for the children in these and other orphanages, that their families will find them quickly and bring them home to shower them with the love and hugs that they have been missing.

Friday, October 15, 2010

Down Syndrome Adoption

I am reposting this article because it's something that we believe that more families could consider supporting, even if they are unable to adopt a(nother) child.

Down Syndrome Adoption Q & A in Down Syndrome Adoption

Today we continue our visit with Andrea Roberts, executive director of Reece’s Rainbow Down Syndrome Adoption Ministry (to acquaint yourself with Reece’s Rainbow, please read my previous post, “Adopting a Child With Down Syndrome”).

Laura Christianson: Reece’s Rainbow helps families adopt children who have Down syndrome. Your focus is on international adoption. Do you help with domestic, U.S. placements, as well?

Andrea Roberts: There are almost 200 families who are “paper ready” and on a waiting list to adopt domestic children with Down syndrome. Robin Steele, who works with the Down Syndrome Association of Greater Cincinnati, is the point person for all domestic adoptions. She is also in touch with a lot of attorneys who can facilitate private, domestic adoptions of children with Down syndrome.

LC: Why does Reece’s Rainbow focus exclusively on international adoptions?

AR: In Central and Eastern European countries alone (including Ukraine, Kazakhstan, Romania, etc., but not Russia), there are more than 1.5 million children who have been abandoned by their families for one reason or another and are living in “public care” (that’s the nice way to put it). If statistically, 1 out of every 733 live births results in a child with Down syndrome, that means at any given time there are 2,046 children with Down syndrome who need families. And that’s just in Europe! Some do not survive because of serious medical complications, lack of medical attention, lack of food, and/or lack of love.
In many of these countries, there is no place in society for children born with Down syndrome. They get dumped in orphanages out of shame and fear. The children with special needs go to the same baby houses until they turn 4; they are then sent to special orphanages for children with physical or cognitive challenges – whoever isn’t perfect gets dumped.
In Russia, these orphanages are closed; once the child is transferred, he or she is no longer eligible to be adopted. In Ukraine, however, children living in those orphanages are eligible to be adopted until they are 16. It’s important that we get these children out of the orphanages before it’s too late. When people become aware of the future they can prevent by adopting one of these children, it motivates them.

LC: What are some other reasons people adopt children who have Down syndrome?

AR: There are two different kinds of people who adopt:
People who have fertility issues and want healthy newborns.
Parents who have a biological child with Down syndrome. They have lived and learned the blessing that these children are.
These children bring more joy than I can describe. Like any child, each child with Down syndrome has his or her own personality and challenges. Families who have had experience with children who have Down syndrome often say, “Give me more of what we’ve got.” We have a family who is in the process of adopting their fourth child with Down syndrome from Colombia.
We are working with three other families who do not have a child with Down syndrome. They simply have a heart and a calling, so they are taking a leap of faith.
Some families are special education teachers. They spend a lot of time with these kids and say, “I want one of my own.”
So there are lots of different scenarios, but the families who adopt have the same heart—they understand what these children bring to the world.

LC: What are some of the challenges of parenting a child with Down syndrome?

AR: Down syndrome is a condition also known as Trisomy 21. It’s caused by an extra copy of all or part of chromosome 21. That causes different issues, in varying degrees, with different children. Yes, you need to get therapy for your child and find special ed classes. You live a different lifestyle, but you adjust.

LC: How are you working with social service agencies in other countries to make it easier for families to adopt children with Down syndrome?

AR: More people would adopt if they could afford it and if they didn’t have to spend six weeks in-country. Most people who adopt children with special needs already have multiple children at home, with or without special needs. The travel requirements prohibit many from making the choice to adopt internationally. We’re reaching out to social services in these countries to encourage them to modify the adoption process or the required time parent has to spend in-country.

LC: Explain your Child of the Month project.

AR: On the first day of every month, one child who is in exceptional need of a family is featured as the Reece’s Rainbow Child of the Month. People can donate $10 a month to go into the adoption grant fund of each child of the month. $10 may not seem like it would make a difference, but collectively, it does.

LC: Tell us about your Yahoo! Group.

AR: The Reece’s Rainbow Yahoo! Group currently has 108 members and is used to keep people abreast of new waiting children and to make announcements about new programs. Many wonderful supporters have joined our Yahoo! group.

LC: How can people contact you for more information?

AR: Visit, donate by check to Reece’s Rainbow, PO Box 2055, Dacula, GA 30019-9998, or e-mail Andrea Roberts at

For more news and information about adoption, visit, andcheck out my ExploringAdoption bookstore.

Thursday, October 14, 2010

To screen or not to screen?

When we were expecting Skylar, our third baby, we had a choice to make about prenatal testing. It wasn't something that we did the first time. And we only got the echocardiogram and amnio after Ainsley was diagnosed with a heart defect.

We live in a rural town and have a great hospital. But it is not equipped to handle the needs of a newborn with heart problems. That's why we decided to have Ainsley delivered at Barnes-Jewish which is next to St. Louis Children's Hospital. She was being monitored by a cardiologist at Children's and would have her heart surgery there when needed.

So when Skylar came along, we only did the prenatal testing so that we could make an educated decision about where to deliver and what specialists (if any) to have lined up for her. Thankfully, that was not what was needed and we were able to stay in town.

We made the decision before we started having babies that they were a gift from God. Period. We would welcome any children that He gives us. I am not against prenatal testing. I just pray that it is used carefully.

When expectant mothers are given a diagnosis of Down Syndrome for their unborn children, 90% choose to abort. 90%!!! My heart breaks for those families because they will not know the unconditional love that a child with Down Syndrome can bring to their lives.

Wednesday, October 13, 2010

"They" are a part of "us"

The article above talks about how several responders to an article called "Is it Harder to Have a Child with Down Syndrome?". Part of the article is about autism and how adults with this diagnosis have become a part of our society. "Alternatively, we can dispense with the layers of sorrow, and interpret autism as but one more wrinkle in the fabric of humanity... This does not mean pretending that adults with autism do not need help. But it does mean replacing pity toward them with ambition for them. The key to this view is a recognition that 'they' are a part of 'us,' so that those who don't have autism are actively rooting for those who do."

Ainsley, just like Gavin or Skylar, needs someone to recognize her strengths and help her make the best use of those to be an active member of society. Adrian & I have been rooting, and praying for, our children before they were born. And cheering them on is one of the best parts of being parents!

Tuesday, October 12, 2010

I am

I love this video! The pictures are amazing. I can't wait to see what God has in store for our little Ainsley-Bean. Good things, for sure!

Monday, October 11, 2010

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.

Saturday, October 9, 2010

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!!

Friday, October 8, 2010

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.

Thursday, October 7, 2010

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 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.

Tuesday, October 5, 2010

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.

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!!

Monday, October 4, 2010

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 ( 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.

Friday, October 1, 2010

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!