Saturday, November 5, 2011

Transitions from one activity to another

I asked some of my Down syndrome posse on Facebook for some ideas with Violette.  In about an hour I had all of these!  I know this is a pretty common issue for kids with Ds, so I thought I'd post this for future reference!  I have highlighted the ones I thought would work best for Violette, and I've removed the names of the kids and posted Miss or Mr. next to their names...
Any ideas about helping Violette do better with the transition from the playground to lining up? Apparently she is displaying some stubborn behaviors when her teacher asks her do come and do one on one activities (that are academic in nature). Hmmm...anyone have any ideas? Her teacher is open to ideas!
Miss M. earns "Miss M. money". Money I made with her picture on it when she transitions in the expected time. She gets to earn a reward when she collects so much. They try to have a reward each day to help her connect the behavior with the reward. She usually earns free reading time or going out to recess a few minutes early. They've also had her go out a few minutes late to recess when she didn't go in from the previous recess without fighting. She has trouble with all transitions (lunch, restroom, recess, etc). And this has really helped her. She has more positive notes than negative ones now.
Does she read yet? A schedule helps many of our kids. If she doesn't read then a picture schedule. A count down reminder, "Violet, in 5 mins. it will be time to come in from playground, "3 mins and it is time to come in." " 2 mins......" "Violet, one more min. and it is time to come in". Also, "it is time to....... do you want me to pick you up or do you want to do it yourself? "
Do you know if they are using “Precision Commands”? I just learned about this method of communication for behavior issues this year. It would be something like this, (1st request) “Violette, it’s time to come to my desk for one on one activities, now please.” If she doesn’t respond. (2nd request) “Violette, I NEED you to come to my desk for one on one activities now.” If she still doesn’t respond, “Violette, I need you to come to my desk now. You can come by yourself or I can help you come to my desk.” Still doesn’t respond. Teacher takes her by the hand and helps her to the desk. “Violette, I get to help you walk to my desk because you didn’t come on your own.” All said with a kind, nice tone. You wait 5-10 seconds before each request. We count to ourselves because 5 seconds is a lot longer than it seems. The person sending the requests should get down to eye level with the child and remain looking at them so they know you aren’t going to “forget” that you asked her to do something. 
 ‎^^These are all great suggestions :)! We ask Miss. B to help a friend do (whatever it is we want her to do)...which works most of the time. We also ask, "Miss B., how old are you? You're a big girl now/You're in pre-k. Big girls/kids in pre-k do (whatever it is we want her to do)." But I am going to suggest to her teachers that they offer her the chance to do (whatever it is she is resisting) herself first, and then say they will help her do it if she won't do it herself. She wants to be independent! What about Violette...does she seem proud of being "big" or doing things herself?
Melissa, Miss M. had this problem start this year in K. Believe it or not..earning stickers on a chart worked! Can you believe something that simple!!??? If she needs any personal reminders or someone to personally come get her off the slide, no stickers. Simple as that.
If they are using a positive reward chart, have them tell her it is time to go inside and put a sticker on the chart for being such a GREAT listener. make it positive. THEN, go to the dollar store and get some teacher notes, and fill them out with "I DID IT MOM!" written on them. When she listens, and gets a sticker on her chart, she ALSO gets a note to bring home to mommy, who will make a HUGE fuss about it and celebrate with some fun mom and V thing. Thus, the positive reward extends throughout her day. Positive behavior plans work wonders, if done right.  The reason for the mommy note, by the way, is because you may not hear from the school on any given day, it may be every few weeks etc, and our kids need immediate acknowledgement of the good behaviors. The note will be something she is excited to bring to you every day, and a great barometer of how she did.
We do something similar to what was described above: 1st we are lining up, then we are going inside to do ____ activity. If he does not follow we give him the 1, 2, 3 count. It just seems that he needs to know what's coming next and the 1st/then approach works for him, gives a road map of what to expect.
 There is an Ipad app called First Then also, GREAT program you can really individualize!
 My 1st grader had issues at the beginning of the year, they resolved it by asking him to be the big helper for the kindergarteners in the resource room. He is paired with one younger child and has to help him line up. Worked like a charm!
 Maybe they could have Violette be the one who calls everyone to line up :) blow the whistle - ring the bell - whatever your class does?
We tried the sticker reward system and that worked for a few months. Her current reward is that she gets to watch 5 minutes of her favorite movie (Jungle Book 2) on a laptop. She loves her movies so this has been the best reward so far. Just have to be careful that no one abuses the reward and lets her watch more than her 5 minutes. So far so good.
 Along the lines of an idea above, could have her be the door holder or give her some other responsibility (bring in the jump ropes, balls, etc.). Be sure they include lots of praise for following directions. One school in our area takes laminated photos of all the different areas of school. They have the child bring in the photo of the next location and put it in a jar. Success is rewarded with a few minutes with a favorite toy or book. Could also have her choose a peer buddy to walk in with from recess. Great for social reinforcement.  Or provide choices..."Do you want to hold the door or choose a friend to walk in with?"
Miss P. teacher always grabs her before she blows her whistle on the playground, so it doesn't even give her a chance to run away or not listen. i'm good with that. :)

Tuesday, June 14, 2011

Teaching Colors to My Visual Learner

One of areas where Violette has had challenges learning has been her colors (for some reason she learned shapes without much work, lol, colors have been a whole different story.)  She's got them down (almost - still have problems sometimes with Purple, ironically.)

Anyway, I thought I'd share some of the MANY resources we have used to help her learn her colors. 

Home Grown Materials:
Here is a little 'game' Violette's wonderful pre-k teacher sent home for us to use.  It is a matching game, with colors. Each Square has velcro on it, and it is good for practicing matching words and colors.  The toughest ones are black and blue and purple and pink for Violette - I think she uses the visual of the words very much, so if she sees a letter B or P, she associates it with those colors.

My mother made this game for Violette for her birthday last year.  Each of these little tins is full of surprises in the same color as the tin itself.  It is a fun game for sorting, finding which is different (sometimes I'll put the wrong color in a pile - like a blue thing in the orange pile, and ask her to pull the blue one out of the orange pile.)  This 'game' is a lot of fun, and one we go back to a lot.


Red Contents:

Yellow Tin

Blue Tin


One of the benefits of being the third child is that Violette has received a number of hand-me-down learning materials of her sisters.  For the last 11 years, these four posters have been hanging in our "baby room" where Violette sleeps:

We've talked about each of the posters with each of the girls, and Violette was no exception.  Here is the color poster:

I picked these up at a bookstore somewhere along the way (I've always thought I should have framed these instead of the tape on the door, lol.  I'm lame, what can I say!)


Violette loves the Blues Clues Shapes and Color Video (a Lilianne hand-me-down):

She also loves the Signing Time "Colors of the Rainbow" from Volume 6:

Vol. 6: My Favorite Things - DVD

Series Two Vol. 12:  Box of Crayons - DVD

Learning the sign for the colors was very helpful - she still will often sign "green" before she will say it if she sees something green.


This little book from Woodbine House is great - the best part is that on the pages, there are also shapes with the color - so maybe a red square and a blue square later on in the book- this way you can check to make sure your child understands the difference in concept between shape and color.

Flash Cards:

These are great flashcards - looks like they are sold out right now at the BabyBumbleBee Site!  We love all of the BabyBumbleBee Videos - I really think they have helped with Violette's speech, especially the question video.

Colors Shapes & Patterns Flashcards

The nice thing about these cards is how strongly they support a visual learner - I've read that kids with Down syndrome do better with images of real things vs. drawings, and have found that to be true with Violette. Check out all of these "orange" objects. Each card is like this with a whole bunch of things the same color:

 So, that's it  - we spent a WHOLE lot of time at home thinking about and talking about colors, lol.  Thank goodness shapes came so much easier! Presently working on parallelogram, octagon and hexagon...


Friday, June 3, 2011

A Wonderful Old, But New to Me, Poem

Sitting on the Board of the Directors of the Down Syndrome Association of Greater Cincinnati is great. At our last meeting, we reminiscing about the history of DSAGC, and one of the founding members of DSAGC attended the meeting. She provided a good deal of history about the early days of the organization, and she also read this wonderful poem that appeared in the materials that they handed out back in the day (her daughter with Down syndrome, by the was is 30 years old, and it was so interesting to hear how full and rich her life is!)

See Me For Me

When you look at me -
What do you see?

When you look into my eyes
   Do you see beautiful blue,
   sparkling with joy, delight
   in my accomplishments
Or do you see that "almond shape"
   or "brushfield spots"?

When you look at my hands
   Do you see them reaching
   for toys, writing the alphabet,
   throwing a ball, doing a
   meaningful job
Or do you see a "simian crease"?

When you look at my face
   Do you see the resemblance
   to my parents, that I have just had
   my hair permed
Or do you see a "flat face" or
   "epicanthal folds"?

When you look at my behavior
   Do you see my feelings of
   pleasure and anger, my desire
   to achieve, my frustration in
   being treated like a baby
Or do you see the "stubbornness"?

When you look at my development
   Do you see me playing with peers,
   participating in sports, growing
   into a productive adult
Or do you see "low muscle tone" or
   "the eternal child"?

When you look at my family
   Do you see loving parents wanting
   to challenge me to my ultimate potential,
   sisters and brothers who have a better
   understanding of the differences in us all?
Or do you see a family torn apart by my
   difference, constantly in crisis, unable
   to accept, never to feel the joy of
   having a "normal child"?

What Do You See?
Look At Me.
Look Closer.
See Me For Me.

Written by :
Donna Roll
Dedicated to
Mary Ellen Graham
Founder of the DSAGC.

Sunday, May 22, 2011

My Favorite Posts for New Moms with Kids with Down Syndrome

In anticipation of meeting with some new moms with new little ones with Down syndrome, I thought I'd do a quick summary of all of my favorite posts on my blog.  In addition to learning about blogging for my day job, I wanted to have a nice archive for some of the most frequently asked questions over on Baby Center so I didn't have to re-type all the answers each and every time something came on the reddish colored text to link into the posts.

Anyway, this is a boiled down list of all of the things I've learned and wish I had had in my brain when I had Violette!

First a few posts about language - how many people like to refer to their kids with Down syndrome is here, and why certain types of questions - "how severe is it" and "is she high functioning" are such odd questions to us as parents is here.

Now a few about pregnancy - first a post about the history of my pregnancy as I recreated it from posts to my wonderful friends at my October 1999 Birth board is here, and what has become one of the most popular posts on my blog, 50+ things to do instead of worrying during a pregnancy with a child with Down syndrome is here.

After the baby gets here, most moms are concerned about milestones - so I have a post of handy links for the best milestone charts and links for a baby with Down syndrome here.   I also put together a list of things we did with Violette during her first year, and what I wish I had known about here.  Many mom's are worry about if they are doing enough therapy with their kids - I wrote about how therapy practice works in our house here.

A few practical things that everyone seems to want to have more information about can be found here: the benefits of signing and more thoughts about signingspoon feeding techniques and wearing her glasses.

Supplements, therapies and controversial approaches are things that parents seem disappointed that they didn't know were available. In my post, I've listed almost all of the approaches that are promoted, as well as any research I've found that is counter those approaches so families can see both sides of the coin. I add to this post as I learn new things or run across new research.  Parents also want to know what they can and should be doing for their kids with Down syndrome, as well as what research is taking place right now. I used this post to explain our approach to alternatives with Violette.

Adult life is a big concern for new moms.  I've written about what adults with Down syndrome can do, businesses owned by individuals with Down syndrome, and Prom Kings and Queens.  I need to find some new links on these threads some of them have expired - on the to do list!

I love connecting families with similar interests and issues to one another. I created a blog roll from our Baby Center Down Syndrome message board. The board is a one stop shop for opinions, answers and support - if you are looking for an outstanding community where you can find practical, friendly, supportive people with children with Down syndrome 365/24/7 the Baby Center Board is for you.  This blog roll is nice in that it gives a bit of background on who everyone is and any issues their child has had in the past.  I also wrote a post about why I think participating in your community group is so very important for you, your family and your children.  I have a huge group of friends on Facebook - if you are trying to connect with someone in your area or with a similar situation to yours, let me know and I'll do my best to help you find someone who has a similar experience.

The last post I'll link to is one of my very favorites - mostly because of the cute picture of Violette that you'll see on here!

I hope you find these helpful!

Friday, May 20, 2011

Links to Birth-5 Down Syndrome Education Articles

So my Ds BFF Nancy commented that she had been reviewing the information on the DownsEd site for Birth - 5. I think the DownsEd information is FANTASTIC, but I think their site navigation is VERY difficult. Sue Buckley is a mother of a child with Down syndrome, and a fantastic researcher.  The FREE Orange County Learning Program is based on Sue's methodology for teaching reading to children with Down syndrome ( We've used many of these materials with Violette.

Anyway, Nancy inspired me to see what was out on the site; I should be reviewing this information frequently - it is just that good. I've never been through everything they have on birth - 5 out there. So I copied each link below. In some cases these are overviews, and in some cases they are specifically birth - 5 focused. Glad to have them all in one place so I can review them.

AN IMPORTANT NOTE: Each of these landing pages is just the start of the article - if you click on the sublinks on the right hand side the articles are broken into multiple sections. If you just read the page these links direct you to, you haven't read all of the information!

Living with Down syndrome - Overview

Overview - Birth – 5

Motor Skills -Overview

Speech and Language- Birth – 5

Reading and Writing- Birth – 5

Number Skill Development- Birth – 5

Social Development (overview only)

Memory Skills (overview only)

Family Issues (overview)
Education Issues (several)


Saturday, May 14, 2011

The Prom King and Queens With Down syndrome

In our local paper today there was a great story about two young people with Down syndrome who were named Prom King and Queen at their school.
I've thought a lot of this. When I first read about a few of these stories, I wondered about the sincerity of the kids casting the votes, and I thought it was a fluke - one particularly kind group of kids in a hard, ugly society.

As this article points out, though, including children with Down syndrome changes things for the kids with Down syndrome, and it changes things for their peers. Everything I've read about anyone with DS in the news seems to say that the other kids find the Kings and Queens with DS extraordinary. I've read so many times "I wish I were more like he/she is."

Then I start to wonder if the typical kids are so tired, so worn out of having to be "popular" and "fit in" that a vote for the child with DS isn't a sympathy vote - it is a vote against what teenagers are pressured to be and what they are pressured to value. Maybe a better way to say it is they aren't feeling sorry for her so they voted for her, they are feeling sorry for THEMSELVES that they live in such a cut-throat shallow peer group, that they rebel against it.

Face it, in any school the "popular kids" are almost as small a minority as the "special needs kids." Sounds to me like everyone in the middle is getting together and telling the kids at the top of the social pile that they are no more special than anyone else.  I like that.

I asked my guidance counselor from High School (who had just told me how great our districts programs for children with different needs were) where the kids with Down syndrome were when I was in High School in the Early 80s?   They were in institutions, or in completely segregated classrooms.  At that point they didn't have rights to be in public, go to Kroger, go bowling, have jobs.  
It is much easier to think about Violette's future when I read these stories and know that our world, while still not perfect, at least has more pockets of acceptance for differences!   Who knows - maybe someday SHE will be Queen (which given that I didn't even go to my Prom seems an amazing concept to me!)

Here is the Story about the Loveland King And Queen.
And a few others:
This one is from last year, but she's too darling not to post!
Long Live the King and Queen!

Friday, April 22, 2011

Diagnosis Day: What Would You Say to Your Past Self?

There is a very thought provoking post over at Down Syndrome Pregnancy Today!  The post asks the question "Experienced parents, if you could travel back in time and meet yourself on that day, what would you say? What would your past self need to hear about your child, your life, your family?"

Please take a moment to post your answer on the thread - the deep well of information at Down Syndrome Pregnancy is so helpful to mom's who find out they are having children with Down syndrome - not just today but for year's to come!

Here is what I would tell me:

I’d have to have a good talking to myself to set things straight!!

You worry she will be a burden.
You are wrong - she is going to be funny, silly, and a joy.

You think this will be difficult for the other two kids.
You are wrong - they will be better, more compassionate people because of her. She will be their sister – they will fight and make-up just like the other girls. She also unify them – they both have a favorite sister, and she is their favorite.

You think you might not be able to handle this, that mom's of kids with Down syndrome are 'special' themselves somehow in a way you aren't.
You are wrong - you have what you need, and those moms aren't super moms either.

You think you might have to quit your job and totally change your life.
You are wrong – your life will be pretty much the same – busier, and harder that first year, but you’ll adjust just fine to your new normal.

You think maybe it would be better if you miscarried her - then you think you are a terrible mother for thinking that.
You are wrong. That would not be better. And you aren’t a terrible mother, just ignorant and really, really, really afraid. Forgive yourself and move on..

You think you are all alone.
You are wrong – you will have more friends and more Down syndrome family than you ever imagined. And they will be amazing!

You think having a child with intellectually disability will be terribly hard for you to adjust to, and that seeing her struggle will make you sad.
You are wrong – you will learn that the value and worth a child is much richer and deeper than that, and that that sometimes what is being measured isn’t the most important thing. She will inspire you with her strength.

You think that she will never enjoy a book or basic literacy, and you feel sorry for her.
You are wrong. She will know her letters, colors and shapes when she is three. Then you will know she will read someday.

You think she will never be able to communicate with you.
You are wrong – she will learn sign language, with your assistance and she will learn to talk.

You think you will never stop crying.
You are wrong – every tear you shed will be rewarded with 30 laughs that she inspires – on purpose - within the first 2 years.

You think having a child with Down syndrome will ruin your marriage.
You are wrong – you married him for a reason – he will not miss a step in loving her, and he will never see any meaningful differences in her.

You think being the 1 in the 1 in 16 odds would be the unlucky thing to happen.
You are wrong - you are lucky.

Saturday, April 2, 2011

New Dreams...

So when I first had Violette and found out about her extra 21st chromosome, I stopped having any dreams for a while - it was weird. I realized that that probably wasn't healthy, not thinking about the future and having a vision for it. After my initial shock, I started finding new things to dream about and think about.

As many of you have probably guessed, I'm not one who spends much time worrying about the future for Miss Vi - I believe that she may have a much more fantastic life than I have had. I know sometimes there is worry about "are we being realistic?" in our expectations. I wrote this in March 2009, and I still think it is realistic..

  •  I imagine that she will travel the world with Special Olympics (and take me places with her that I have only dreamed of.)
  • I dream that she will live every day of her life as if it is the "best day in the best life ever," which is a phrase I've heard many adults with Down syndrome say.
  • I dream that she will go to camp - I was never allowed to!  
  • I dream that she will be a public speaker - I love doing it, and I'd love to see her have a number of experiences doing that.  
  • I dream that she will be fluent in a second language. I never could learn - I'm giving her skills to be a good signer and I know other kids with DS go to secondary school and major in signing and deaf studies.  
  • I dream that through her life long advocacy for people with Down syndrome, something she started when she was 3 months old with an article that ran in our local people she will have helped change how the world perceives people with Down syndrome and other developmental and physical disabilities.  
  • I dream that she will be confident that she is ok as who and what she is, and that she will live in a world that values the inner person and inner beauty more than outer beauty.

What dreams do you have for your child with Down syndrome?


Thursday, March 3, 2011

IEP Resources and Videos

A little about the power of getting a lot of fruitcakes in the same room.

A few other favorite resources:

Hilarious blog post: 

Article about things to watch out for:

So far our's have gone very very well.  But I'm keeping these in my blog in case I ever need a laugh!

Wednesday, February 2, 2011

A New and Improved Down Syndrome Baby Center Blog Roll!

One of my favorite places to hang out online is the Baby Center Down Syndrome Board.  This is a group of great women who all share a love of their child (or children) with Down syndrome.  This post is a list of all of the great blogs the mom's keep, along with a little description of what they talk about on the blog! 
I hope a lot of people will use the list to find some new blogs for their own blog roll, or to find other moms who have walked a path that they may be walking in the future!  You will see the blog name, name of the blogger, and the screen name they use over on Baby Center. 

If you are looking for someone who has experience in something you are going through and don't see a match on here, let me know.  I've got a lot of contacts and we are sure to come up with someone who has experienced the same thing and would be willing to talk with you!

<Adding a note to say if you have a great blog that isn't on this list, I'm going to do a follow up with other great blogs I love - leave me a note or shoot me an e-mail with a description of your blog and I'll add them to that post - I will link to that list here!>

Drum roll, is our Blog Roll! , Ilisa, dpmom3
I have a little resource center on there that targets what my experiences have been: mainly nursing and heart defect related and just life in general.  newlyb-rest
After having my boy 10 years ago, I welcomed my little princess. My blog is mostly about discovering the blessings my baby girl born with Down Syndrome is bringing to my family.  Amy, AmysMiracles
SAHM to three, our youngest diagnosed with DS post-natally. Blog about family and raising children with and without designer genes. Jennie, JenMSU
The crazy life of a Christian family with three boys (Nathan 5, Micah 3, and Matthew 2), one of whom sports an extra perky and pesky 21st chromosome. "We" have survived duodenal atresia, AV Canal repair, G-tube, GJ-tube, toxic shock syndrome, and a few more minor medical issues. We did have a prenatal diagnosis and I struggled fairly openly on my blog during those early days and forward. Cassie, casslong
Forever changed by the beauty of Down Syndrome, this is the story of a NICU nurse and her family as they learn, adjust, embrace, and accept how beautiful life can and will be- even though it is a little different than expected. Despite feeding problems and a Ventricular Septal Defect, Audri Beth will inspire and surprise us all...just you wait!, Patti, oregonmotherof9
Blogging about life as a proud stay-at-home Mommy and born-again Christian. This blog chronicles life with10 beautiful children, the youngest of which has a magical extra chromosome. Advocacy and adoption awareness are also subjects of this lovely blog. Ria, billandria
I am a stay-at-home mom to Matthew (2007, born with Down syndrome) and Elizabeth (2010). I share lots of helpful information as I write about the joys we celebrate and the challenges we face, sharing our experience with toys (in my toy reviews), reading, ear issues, food aversion, sibling dynamics, therapy, school, advocacy, and more. I also write book/DVD reviews, featuring mostly Down syndrome-related books, articles, and DVDs that I have read or watched. Libby, *MotherHen*
A story of life. A life blessed with some tears, mostly laughter and an abundance of grace. A story of family, motherhood, Christianity, raising three boys, one with Down syndrome, and whatever else comes to mind. Carolyn, kiwiaussie Emily, Em080
I am a teacher turned stay-at-home mom from Wisconsin chronicling the trials of raising three young children, one with Down syndrome and a repaired AVSD. I write frequently about our successful breastfeeding journey despite the odds as well as current advocacy issues. Meriah, doozee
A deaf, raised-abroad, stay-at-home, crunchy, disability-activist, Baha'i mom chronicles life. Writing with photos about disability (primarily deaf-ness and down syndrome), faith, art, the joys of potty training, struggling with binky-envy and other such things. Nancy, Reader1234
This blog gives expectant parents waiting for the birth of a baby with Down syndrome the opportunity to hear from the Down syndrome community about topics related to pregnancy, delivery, emotions, raising a child with Down syndrome, and many other topics. Laura, jtkkmom
Here is a quote from my first post: "I made my first promise to my newborn daughter that night. I told her that one day she would amaze everybody. I believed it with all my heart, yet I never imagined that a short 3 years later I would be writing this post. I never doubted that she would show the world what an incredible person she would be.....but I had no idea that I would be the one who is the most amazed."  My blog is about the slightly different path that we have chosen in raising our daughter with Down syndrome. I am going include videos of her reading the alphabet at 2 & reading books at 3.5 years. I am hoping to inspire new parents to have high expectations for their children. Anna, HugYourNP
Follow Ellie Bear's antics, development, triumphs, and challenges along with her SAHM and former Pediatric NP mom, engineer dad, 2 feisty cats, and a hyper border collie. Some medical information and inspirational stories about others blessed with the extra special chromosome are included. Melissa, shininglamp
A Baha'i mom discusses life as a mother to a daughter with familial translocation Down syndrome and a repaired AV Canal. Musings on the Baha'i faith, goings on in the Down syndrome world, and the occasional knitting brag.  Crista, VTMommaBean Sonia, navywifemomof3  Jennifer, crazycrustacean
Starts off with finding out the news of Sean's DS at 28 weeks pg and rediscovering life because of it. The blog has evolved from mourning who my son was supposed to be to celebrating who he is and the life we live. It's very real & honest and sometimes very dark. It's also fun & creative. You get to see how his big sister couldn't care less how many chromosomes he has and how much fun they have together. Of course you get to see Rob & me evolve as parents of 2 very different, very cute & lovable kids. Jaime, jt1982
A blog about a lesbian family waiting for their son to be born. He was diagnosed with down syndrome at 21 weeks. Jill, LadyEowyn Alainasparents  Brandi, michaelandbrandi Kelly, CallMeKel
A weekly diary of Kaetlyn's progress through the first year of her life (she has DS), written from her viewpoint. (And beyond, hopefully when we get there :)) Sharing ups and downs and triumphs and milestones. Not necessarily focused on DS, more written to keep friends and family in the loop and so I don't ever forget this amazing year. We hope it shares what a joy and blessing she is to our family. jedmunds02
This blogger describes her dd Kylee's heart issues and surgery - she had a full repair for Tetralogy of Fallot and Atrioventricular Canal Defect. She also has issues with aspiration. Now, she generally discusses Kylee physically and developmentally. Kelly, kellymaureen622
Full-time working mom of 3 children (one in heaven and one with DS) and all the craziness that comes with it! Kate, zilkakatt
Keeping up with Quinnlan & Remy - tales of two brothers, their many adventures, and the parents who are lovin' every minute of it.  Wendy, wlankford75
A blog about my life as a stay-at-home mom/type A overachiever. I talk about my life with my 3 adopted guys (hubby and 2 little ones), my projects, and my faith. Kristin, kandkb
A blog our family started shortly after Liam was born and before his first OHS to keep family and friends updated on his progress. What we didn't know way back then what an amazing support it would be to us, almost a lifeline while we went through some complications following his surgery and the days spent in the hospital while Liam was fighting so hard to make it. We decided to keep up with the blog following his surgery and it has almost turned into a virtual "baby book" of sorts for Liam, and now his little sister! Kayla, PrincessKCRoo
Teacher turned SAHM to a beautiful boy who happens to have a rare form of Down syndrome. My blog chronicles everyday life, the joys(and struggles) of raising a child with Down syndrome and promotes education and awareness regarding DS.  Meriah, doozee  Laura, MissFancyPants
 I am the mom of 2 wonderfully close sons. Adam is 25 and Jakey is 10 and has Down syndrome. I have recently and happily separated from my husband, who is a terrific dad … although it is exciting to be moving forward, it is a major life upheaval for all. Mostly, I am trying to remember who I used to be. I am lucky enough to work at home — there’s nothing like working in your pjs. I blog about my life thinking someone may actually find it interesting. If not, feel free to tell me so but please be gentle. Melissa, Lallybroch Lexi, magnusson0825
A mostly honest, sometimes humorous, very squishy look into real life as a mom of 3 boys and 1 girl. It's about autism, it's about Down syndrome, it's about the things that keep me sane (like crafts and good friends) in an insane home. Stephanie, shareislam Sheva, alisheva
A blog about my shtub (home). I'm a stay at home Jewish Chassidic mom raising 3 kids and one husband. We take everyday as a new adventure.... I talk about my kids and how I love them to pieces, I talk (a lot) about my youngest having Down syndrome, and other days about my chronic disease that can knock me on my tush, and barley go noticed on other days. We also like to craft here, so a little of that too! Christan, crissy2905
My blog is about my kids and my family. It is focused a little on Ds. Its mostly for showing the going ons in our home. Donna, momtomissk
My writing is about our journey with T21 and all the blessings our lives bring. I have 2 children with the same heart condition, Tetralogy of Fallot. Katie also has a dx of Infantile Spasms. (seizures) Ann, atjtnt
I'm a SAHM to 6-year old Nate and 33-month old twins, Caleb and Maggie. We got Caleb's Down syndrome diagnosis after he was born. He had open-heart surgery on 9/3/08. My three little birds are amazing. Adrienne, sophie&blitz  Susan, PDXSusan
An Anthony-centric look at the wacky adventures of our family. Anthony started off life with hydrops and a 3-month NICU stay, but he wasn't about to let that get in his way. Shauna, mutherbyrd
Ramblings about whatever crosses my mind in relationship to Reagan, Down syndrome and learning about many things medical and spiritual., Tara, momlakes
Mom of the super seven writes mostly about the ups & downs of Down syndrome, from a faith based perspective. Erin, montanabound57
How one tiny Chromosome launched our family onto a journey of faith, photography and compassion. I am a 26yr old Jesus lovin' wife and mother to two beautiful boys... My blog follows our everyday happenings, therapy musings, the sticky stuff in life and obnoxious staged photo shoots :) Since our pre-natal diagnosis my heart is for the ones who are waiting to meet their child with Down Syndrome... Erin, Mtn_girls
Occupational therapist, and mother of two girls (older with T21), shares whatever is on her mind regarding parenting, advocacy, Down syndrome, therapy, daily life, and straddling two worlds. Tera, Mum-2-2-girls
I am a military wife of a deployed soldier and have a two and three year old as well as our newborn :-) Tracy, MyBeautifulDisaster
An often tongue in cheek blog. I start with our surprise pregnancy after years of fertility treatment, and more surprises with a positive prenatal diagnosis of Down syndrome. I don't spout my Christian views, rather I "season my speech with the word of God as you would your food with salt." But I also call a spade a spade, especially when writing about my two older children with Autism. I write about daily life raising three special needs children. Tiffany, tnt111
Reflections on my life with my firecracker of a daughter who dances through life and flaunts that bonus chromosome. I regularly have guest bloggers and opportunities on to support us as a special needs community!! jakeswife
Bringing up the kids internationally: anecdotes and observations from an anglo-american couple who move around the world and whose family happens to include a perfect little girl with Down syndrome.  Christie, one+twins=3boys
Blogmom to 3 boys, including a set of fraternal twins (one of whom was born with Down syndrome and diagnosed post-natally) shares her musings on life in general and loving and raising a child with Down syndrome. Tricia, teal915
Stay at home mom of 3 blogging about every day shenanigans and experiences raising a princess diva 4 year old, off the walls energetic 3 year old, and sweet baby girl with Down syndrome. I'm proud of our blended family, including my 14 year old step-son, our faith, and our beautiful life.  lambfox7

Everyday life of our family. We take pictures of our outings to local parks and farms, and also of what they're doing when the house gets too quiet! Focused on kids, animals, and books, with an occasional musing on Down syndrome.  Brenda, LulaBelle-n-Fia

A blog about living life, loving people, and finding adventure and joy in everything. Wife to an adoring husband and stay-at-home-crafty-momma to three girls, the youngest having that magical chromosome. This blog is not Down syndrome exclusive, but it does touch on many of the issues that arise as a result of lovin' on my girl. *Medical- Hirschsprung's Disease and Strabismus, both corrected with surgery.  Susanna, veritysmama

The blog of an unapologetically Christian home-educating mom who has an eclectic writing style and ten children so far. Starts with the mid-pregnancy news of Down syndrome and heart defect, all the way through to birth, congestive heart failure, NG tube, urgent open heart surgery (complete AV canal and PDA), long-term feeding difficulties w/ eventual breastfeeding success, and a surprise journey to international adoption. Katie, NewMommy_Jack's  Julia, JuliaHarrison

Not Down Syndrome exclusive, its a blog about life, love, and motherhood. It's about taking all that your given and letting it shape you into something different and better. It's advocacy just by being. Not necessarily a Ds Blog to gain medical insight as our only significant dx was Tracheal Malacia. Erin, morris1403
Blogging the always busy and always interesting lives of four kiddos, the youngest having Down syndrome. Honest information regarding our experiences during the pregnancy (prenatal diagnosis) and how life has changed/or not changed since the birth of our son. Nicole, edamommie
A blog from a full-time working mom's world about her loves in life as she celebrates parenting 2 young girls and the beauty she sees in her world. Our youngest daughter was diagnosed with Down syndrome post-natally. We often discuss her therapy, development, medical issues (including duodenal stenosis, moderate dysphagia and a ventricular septal defect) and inclusion in her typical preschool class. Additional disability resources, advocacy and informational links are maintained on our site.  Signe, GABGAV1  Kelli, rnkellit  Cindie, beauty3551

My blog is about having a prenatal dual diagnoses of T21 and EHK at our age of 21 and meeting my precious boy. It also includes our struggles with his OHS and complications, along with his triumphs and our decision to give him a sibling. Robin, triponmtrain
This blog follows the adventures of Megan and her big bro, Myles. Megan has DS and had heart surgery in May 2010 (AV Canal). This blog does include information and pictures about surgery and post-op experiences.  Erin, eringal
My blog is about our entire family, though I focus a lot on Lucas and his development. The other focus is about photography and taking photos of my children that I can cherish forever. Soon I will be focusing on his ST because this is an area that is most delayed for him. Amy, wlknh2o
A blog to celebrate the beauty, bumps, and bruises that my family and so many others experience from day to day. Though we are often refreshed by the beauty that life has to offer, we grow mostly from life’s bumps and bruises. We should embrace them all because they make us who we are. Julie, Hoot262
The blog that took me 2 years to start because I was scared of what people might say, but with several gentle proddings from people after micro-blogging on BBC and FB, I took the plunge. This is the current story of our family of four: me, my husband, my son Kai and my daughter Lilah sprinkled with historical posts from the last two years. Those include going through Kai's open heart surgery for an AV Canal and Coarctation of the Aorta at 10 weeks and through the learning process that has brought me to the over-filled heart of pride I now have for Kai. Also included are posts of me finding my way, on a delicate tightrope, to help other families that have a diagnosis before birth(usually through word of mouth from friends)or at a surprise births where I work, in a large Children's Hospital in the level 3 NICU and also for friends on BBC, FB and IRL. Kai has inspired the passion in me that I have been looking for all my life but could never quite put my finger on. Sandi, Dragon73
"Welcome To Our House" is a blog written by a Police Officer Mom about our journey discovering - living, learning and loving a life combined with Down syndrome. The blog was originally put together to help chronicle the events in our son's life and to help me with writing the book, "Welcome to Our House". Because we knew of our son's diagnosis before birth, it allowed me to direct the blog to help educate the public about Down syndrome, provide resources about Ds and a portal to providing support to and for anyone interested. The blog contains day to day real issues, medical & heath, toy reviews, Development & Early Intervention, videos and photos surrounding our journey. The blog is also where anyone can purchase books I have already written about Down syndrome. Missy, viviannesmom
You are here! A smattering of Down syndrome, prenatal diagnosis observations, and all of the things I find interesting about people with an extra copy of the 21st Chromosome. Oh, and lots of cute stuff and silly videos about the Amazing Violette Hope!