The Billboard!

It was a dream of mine to have a billboard "some day". I never thought "some day" would be TODAY! That's Logan's friend, Brandon and Katie up there.

If you want to do a drive-by, it's between Main and Winneconne in Neenah on Hwy 41. You can see it when you are going south and it's on the left side of the highway.

People First Language

I know that I have posted on this topic before, but I am going to continue to remind others of this again and again. Please read this post from my local Down syndrome support group. It drives me crazy when I hear a baby being called a "down's baby". I know it is easier to say it that way, but Logan is a baby who has Down syndrome. Please remember to put the person first before the disability.
People First Language post at DSFN

Eyes

This post probably seems a little strange...but keep reading...I am still in aw of what I can capture with my new camera. I never before had the ability to capture such detail. I have always thought my children's eyes were beautiful, but now I can record what they actually look like to me everyday. I also have a little something to say about the eyes of children with Down syndrome. Are they not the most beautiful eyes you have ever seen!! When Logan was born and we were given his possible diagnosis of Down syndrome, my doctor said he suspected DS because of two things, Logan's simian crease on his palms and his slanted eyes. It did take me awhile to accept the way that Logan would look, including his eyes. When I got passed the fact that Logan's eyes would look different than most kids, I began to see the striking beauty of their almond shape. You can even see the brushfield spots in the colored part of his eye.

Possibility Playground

View the current issue of MetroParent Magazine online. The AWESOME Possibility Playground is featured. I hope to visit it someday. I wish it was closer to us. The playground is designed for children of all abilities and is located in Port Washington, WI. This playground is a dream come true for there community. It is a great example of people coming together to make our world a better place for differently-abled kids.

It's Different...

I knew that it was going to be a little different having a typical baby after getting used to Logan over the last year and a half. I first noticed how strong Aubrey is. I didn't think Logan wasn't strong when he was a newborn, but I was told his muscle tone was pretty good. It did take him a long time to gain good control of his head. I am just realizing now how low his muscle tone really was, and is. I am sure his doctors didn't want to discourage us at first.
Logan's milestones came very slowly at first. There were times when I thought he would never progress. I know that Aubrey will move right along with her milestones and I won't feel as much pressure to help her. With Logan, each milestone has taken much more practice and effort on his part. It doesn't seem fair. He has worked so hard when typical babies just gain skills with what seems like no effort at all.
I have a fear that Aubrey will just blow by Logan in no time. Instead, my hope is that Aubrey will push Logan to develop his skills, but I don't want her to leave him behind. I know I also have to face the reality.
One more thing, I feared that it would be hard to give each child the attention they deserve. Devin and Aubrey are always grabbing my attention, but Logan has so much patience and will wait for me to come to him. I want him to speak up! It's hard to remember to give him as much attention. I feel horrible about this, but I am going to make a point to give him all of the time I can. I can't wait until he can tell me exactly what he wants or is thinking.

What's a "healthy baby"?

I wish I could participate in 31 for 21, but instead I plan to post about Down syndrome more than I would normally this month. I will be lucky if I can find time to blog once a week this month, let alone everyday!
As my due date approaches I often hear the same words over and over from people, especially from people who don't know me or my family. People like to start conversations with me about my pregnancy. It usually starts with "When are you due?" or "Do you know what you are having?", but it always ends with "As long as it is healthy, that's all that matters." When I hear that I get a sad feeling. What is a "healthy baby"? Before having Logan, I guess I would have considered a baby with DS or other birth defects an unhealthy baby, but are they really?? Logan was born without serious health problems and was and is very much like a typical "healthy baby". I guess I feel like they are saying "unhealthy" babies are not good enough or are a disappointment. During my current pregnancy, I have never said "I just hope she is healthy", because I feel guilty, like I am saying Logan was not good enough and I want this baby to be better. This time, I just want what God is going to give me. However she comes into this world and whoever she is, is what I want. I know that people are afraid of a baby with serious life threatening health issues, I am too, but I am not afraid of a baby that is just different or a little enhanced like Logan.

Great News for Down Syndrome

Global Institute dedicated to Down Syndrome

CBS News Talks About DS

http://www.cbsnews.com/video/watch/?id=4437874n

Proper use of language for Down syndrome

I came across an article today that did a great job of describing the proper way to describe a person with Down syndrome. I've been wanting to post on this subject before now, but I wanted to make sure I knew the proper language myself. This article was posted due to the birth of Sarah Palin's son Trig. Since his birth, the media has not always done a good job of using the correct language when talking about people with Down syndrome.

Down vs. Down's. NDSS and NDSC use the preferred spelling, Down syndrome, rather than Down's syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome” as well.

People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down's child” and describing the condition as “Down's,” as in, “He has Down's.”

Down syndrome is a condition or a syndrome, not a disease.

People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.

It is clinically acceptable to say “mental retardation,” but you may want to use the more socially acceptable “cognitive disability” or “cognitive impairment.”

I also came across some myths about people with Down syndrome that may be interesting to those who don't know much about DS. Here is the link if you are interested:

http://www1.ndss.org/index.php?option=com_docman&task=doc_view&gid=162&Itemid=292%22title%22Click

Chromosomes

I have had a few requests from friends and family who were curious to see Logan's chromosomes. So, here they are. (it is neat to see someone's real chromosomes) Logan has the standard, non-inherited type of Down syndrome where he got an extra 21st chromosome from my egg or Dale's sperm. Basically, one of us gave 24 chromosomes instead of 23 each to make 46. As a result, Logan has 47 chromosomes. It was a random event that happens in about 1 in about 800 births. Over the past year, I was not always comfortable talking about the extra chromosome. But now, I'm so proud of him and the fact that he has Down syndrome.

ProLife

This post was inspired by Michelle. Please also read her post on this topic and enjoy the beautiful pictures of her daughter Ruby.

As some of you may have read on my blog in the past, approximately 92% of parents who receive the prenatal diagnosis of Down syndrome terminate their pregnancies. Recently, the American College of Obstetricians and Gynecologists’ changed their recommendations for prenatal testing for Down syndrome. In the past, it was only recommended that women over 35 be offered the testing, now the ACOG is recommending that all women be offered the screening. Currently, when women receive the prenatal diagnosis, not all doctors are providing them with accurate, up to date information about Down syndrome. Instead, women are overly inflenced to get the testing or to terminate the pregnancy. Consiquently, even more babies with DS are not going to get a chance at life. Right now, there is a new bill in the Senate called the Brownback-Kennedy Prenatally Diagnosed Condition Awareness Act that will hopefully ensure support and proper information for parents who receive a prenatal diagnosis of Down syndrome.
After having my son and meeting so many families who have children with Down syndrome in person and online, it's clear to me that if the families facing a diagnosis of DS could meet our kids, they would see how wonderful and beautiful our children are and how much they belong to be here with us. I wish it wouldn't have taken having Logan to open my eyes to these amazing children and their families.
If you feel strongly about this issue, please sign the petition to support the Brownback-Kennedy Prenatally Diagnosed Condition Awareness Act.

3/21 Video

Tomorrow is World Down Syndrome Day. Please take the time to watch this video and pass it on to someone you know to raise awareness of people living with Down syndrome.

Making the Right Choice

About the Down Syndrome Belongs Video in my last post:

I wish there was a way that I could make everyone aware of how wonderful kids with DS are and how much they deserve to be born so that Doctors and expectant parents can make the right decision when faced with the diagnosis of Down syndrome. It makes me sad when I think about 90+% of DS pregnacies being ended and many Doctors are actually encouraging this. I am so thankful that my doctor never encourages ending the pregnancy. That makes me feel like I chose the right doctor. He also had a very positive outlook for us when he delivered the diagnosis. He told us Logan was a blessing in disquise and that everything would be ok. He also told us how he has personally been touched by a nephew with Down syndrome. At the time, we were in shock from everything, but I look back and am very thankful that he handled the situation so perfectly. I have heard stories from other parents where their doctor's were not so encouraging.
I wish someone would have told me about children with Down syndrome before I had Logan. I wouldn't have been so devistated at first.
For now, I guess the best thing I can do is to take Logan every where with me and include him in all of the activities that typical kids participate in. We take Logan every where we go and I think he already has touch a lot of people and changed their minds about DS. They have discovered Logan is just like any other baby.

Parenting Magazine

Last night, I was surprised to find a great article in the December/January issue of Parenting Magazine. I have to admit that I have just recently started to page through this magazine again. (looking for gift ideas) After Logan was born and the magazine would come, I would usually throw it away or give it away. I couldn't even open it because I just thought, "there's nothing in there about my baby!!". So, I guess I should give the magazine a chance again because they did decide to talk about my baby, but I still think they could do more to include families and children living with disabilities in their magazine. I would love to see a baby with Down syndrome on the cover or in some of the pictures inside or some special toys or products for my child.
Here is the article: Life With Anthony

Down Syndrome Awareness Month

Wednesday is the end of October and Down Syndrome Awareness Month. I found a great website to buy awareness pins, key chains, car magnents and rubber bracelets. Visit PinMart to find these items.

Perspective

Someone I know recently told me that if she could not have children of her own someday, she wants to adopt a child with special needs. Her words shocked me and made me think..."Maybe I can make it.....if someone I know would choose to have a family like mine". I guess I just assumed that no one would want to be in my position even though they all say how wonderful Logan is and that everything is going to be ok. Before Logan, I know I would not have willingly taken on a child like him. I feel a bit ashamed of that. Maybe that is why God gave him to me. I needed a little push to try something that was completely out of my comfort zone.

To that special person...THANK YOU...the world needs more people like you in it.

DOWN to Earth

Last night I attended my first DOWN to Earth meeting in Oshkosh. It is a Down syndrome support group for the Fox Cities. (different than the one that I am a part of in Appleton, which is the DS Family Network through the Arc of the Fox Cities) I was surprised to see so many families with new babies joining the group for the first time just like us. It was great to talk with them and hear about their experiences and their new little bundles, but their stories made me feel so thankful that Logan was born without any major medical issues. The families are doing so well considering everything they are going through and will go through in the near future.

Having a bad week...

I don't know if it is because I have to take Logan to the doctor tomorrow, or that he seems to be falling behind in his gross motor development, or because kids are going back to school now and I can't help but think about what that is going to be like for us, but I just feel sad. I was getting good at living day to day, but recently I am worrying about tomorrow a little too much. I was told to learn all that I could about the endless list of medical issues that could affect Logan because his doctor may not test for these things appropriately. I know that I am going to have to be his best advocate, but I don't know if I am prepared to be his doctor as well. I was never the type of person to be pushy with professionals, but I guess this is just a taste of what is to come.

Meeting Down Syndrome Families

I have been overwhelmed (a good kind of overwhelmed) by the response I have gotten from families who have a child with Down syndrome. I have gotten connected through Parent to Parent, DS Association of Wisconsin and the Arc of Appleton. The Arc has a wonderful group called the DS Family Network. They meet as a playgroup every week. I have also had families wanting to meet us and we have since gotten together with three different families individually. I also plan to hopefully go to a Down to Earth meeting in Oshkosh soon.


Logan meets Ruby, born only 4 days before him.

How I felt about a month after Logan was born...

First email I sent to a parent with a child with down syndrome...first time I was brave enough to reach out...

Sent on June 24th, 2007
Logan was born on Mother's Day last month and is doing really well.
It was a complete surprise at birth that Logan had Down syndrome, so we had a very hard couple of weeks in the beginning. After the shock was over the next thing was the bonding process, which was really hard because I constantly compared how I was feeling to how I felt when my first son was born. I wanted so badly to feel the same way because it had been such a wonderful experience, but this time was just much different. It took longer to bond, but at this point I feel like we have come a long way and we love him so much, I can't imagine life without him.
The first couple of weeks I didn't want anyone telling me about Logan's condition and I didn't seek out any information. At that time I didn't think I would ever want to know because when I looked into the future I felt so overwhelmed and scared. (I still do) But eventually I started to read some info and I felt more and more comfortable talking to doctors and therapists.
I am doing pretty good right now because I have learned to live in the moment and take one day at a time. I feel less overwhelmed and I feel like I have had the time to adjust our future in my mind. It was hard to let go of how I had pictured our family's future to be before Logan arrived.
My husband is doing surprisingly well. He was very sad at first, but he quickly just made up his mind that we were going to love Logan and get on with our life as a family. He is very optimistic...more than me...I tend to be more realistic. I fear that Dale (my husband) may be disappointed in the future and I don't want to set myself up for that. But lately it has been hard not to be optimistic because Logan is such a sweetheart and so strong and healthy, so we have really been having a lot of fun with him.
We are in the process of filling out the paperwork for Katie Beckett and we have started the Birth to 3 program. He has had 3 therapists and a teacher assigned to him and we will be meeting the therapists and setting up our plans and goals for Logan this week.
I feel like we have done all that we can and should do for now...